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Biocultural Correlates of Chronic Pelvic Pain in Women

Permanent Link: http://ufdc.ufl.edu/UFE0022885/00001

Material Information

Title: Biocultural Correlates of Chronic Pelvic Pain in Women
Physical Description: 1 online resource (254 p.)
Language: english
Creator: Baker, Patricia
Publisher: University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: 2008

Subjects

Subjects / Keywords: biomedicine, causality, chronic, ethnicity, fragmentation, productivity, sexuality
Anthropology -- Dissertations, Academic -- UF
Genre: Anthropology thesis, Ph.D.
bibliography   ( marcgt )
theses   ( marcgt )
government publication (state, provincial, terriorial, dependent)   ( marcgt )
born-digital   ( sobekcm )
Electronic Thesis or Dissertation

Notes

Abstract: Chronic pelvic pain (CPP) is common health problem among women that responds poorly to biomedical intervention. Studies examining the implications of race/ethnicity on health care for women with CPP are scarce. This study utilizes a biocultural approach to examine social and clinical characteristics among a sample of ethnically diverse women seeking biomedical care for CPP. Interview data describe the impact of CPP on social roles and responsibilities, women?s explanations of the cause(s) of pelvic pain and their perceptions of biomedical treatment. Sixty-three women, 15 African Americans, one Hispanic, and 47 European Americans participated in the study. Despite the limitations of the small sample size, there was a statistically significant ethnic difference in level of pain intensity with sexual intercourse, (M=8.43, SE=0.69) among African American women compared to (M=6.18, SE=0.49) for European American women. There were notable although not statistically significant ethnic differences in treatment response, ranking of CPP as a life problem and abuse history. Themes identified by analysis of interview data related to causality, sexuality, productivity, and fragmented health care corroborate findings in other studies and illustrate the relevance of conceptualizing CPP within a biocultural framework.
General Note: In the series University of Florida Digital Collections.
General Note: Includes vita.
Bibliography: Includes bibliographical references.
Source of Description: Description based on online resource; title from PDF title page.
Source of Description: This bibliographic record is available under the Creative Commons CC0 public domain dedication. The University of Florida Libraries, as creator of this bibliographic record, has waived all rights to it worldwide under copyright law, including all related and neighboring rights, to the extent allowed by law.
Statement of Responsibility: by Patricia Baker.
Thesis: Thesis (Ph.D.)--University of Florida, 2008.
Local: Adviser: Lieberman, Leslie S.

Record Information

Source Institution: UFRGP
Rights Management: Applicable rights reserved.
Classification: lcc - LD1780 2008
System ID: UFE0022885:00001

Permanent Link: http://ufdc.ufl.edu/UFE0022885/00001

Material Information

Title: Biocultural Correlates of Chronic Pelvic Pain in Women
Physical Description: 1 online resource (254 p.)
Language: english
Creator: Baker, Patricia
Publisher: University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: 2008

Subjects

Subjects / Keywords: biomedicine, causality, chronic, ethnicity, fragmentation, productivity, sexuality
Anthropology -- Dissertations, Academic -- UF
Genre: Anthropology thesis, Ph.D.
bibliography   ( marcgt )
theses   ( marcgt )
government publication (state, provincial, terriorial, dependent)   ( marcgt )
born-digital   ( sobekcm )
Electronic Thesis or Dissertation

Notes

Abstract: Chronic pelvic pain (CPP) is common health problem among women that responds poorly to biomedical intervention. Studies examining the implications of race/ethnicity on health care for women with CPP are scarce. This study utilizes a biocultural approach to examine social and clinical characteristics among a sample of ethnically diverse women seeking biomedical care for CPP. Interview data describe the impact of CPP on social roles and responsibilities, women?s explanations of the cause(s) of pelvic pain and their perceptions of biomedical treatment. Sixty-three women, 15 African Americans, one Hispanic, and 47 European Americans participated in the study. Despite the limitations of the small sample size, there was a statistically significant ethnic difference in level of pain intensity with sexual intercourse, (M=8.43, SE=0.69) among African American women compared to (M=6.18, SE=0.49) for European American women. There were notable although not statistically significant ethnic differences in treatment response, ranking of CPP as a life problem and abuse history. Themes identified by analysis of interview data related to causality, sexuality, productivity, and fragmented health care corroborate findings in other studies and illustrate the relevance of conceptualizing CPP within a biocultural framework.
General Note: In the series University of Florida Digital Collections.
General Note: Includes vita.
Bibliography: Includes bibliographical references.
Source of Description: Description based on online resource; title from PDF title page.
Source of Description: This bibliographic record is available under the Creative Commons CC0 public domain dedication. The University of Florida Libraries, as creator of this bibliographic record, has waived all rights to it worldwide under copyright law, including all related and neighboring rights, to the extent allowed by law.
Statement of Responsibility: by Patricia Baker.
Thesis: Thesis (Ph.D.)--University of Florida, 2008.
Local: Adviser: Lieberman, Leslie S.

Record Information

Source Institution: UFRGP
Rights Management: Applicable rights reserved.
Classification: lcc - LD1780 2008
System ID: UFE0022885:00001


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1 BIOCULTURAL CORRELATES OF CHR ONIC PELVIC PAIN IN WOMEN By PATRICIA MARIE KING BAKER A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLOR IDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 2008

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2 2008 Patricia Marie King Baker

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3 This work is dedicated to several individuals. First, Fr ank W. Ling, MD, FACOG, whose holistic approach to health care for women with chronic pelvic pain afforded me the opportunity to contribute to the science that seeks to expl ain this complex condition. Leslie Sue Lieberman, Chair of my doctoral co mmittee deserves more than the usua l acknowledgment for her role; her dedication is boundless and inspiratio nal, this projected is dedicated to her and I am indebted to her forever. My family supported me in this e ffort in many ways and for many years, in what were often unconditional acts of love and faith. My cousin and colleague in social science, Michael Clemmers, PhD deserves a special de dication for pushing me to connect the dots between will, in all the connotat ions of the word, and completion of a dissertation. And finally, to the many women living with chronic pelvic pain for the privilege of serving them both as a physical therapist and an anthr opologist; I am witness to the courage they e xhibit as they negotiate the health care system in pursuit of re lief and I am grateful for their willingness to share the details of their expe rience with me; they have prof oundly effected my life and this work is dedicated to the hope that their suffering will end.

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4 ACKNOWLEDGMENTS Several individuals, institutions and organizatio ns were instrum ental in this project. The physical therapy faculty, womens studies prog ram faculty, and university administration at Shenandoah University supported this effort thro ugh release time for research, travel support, utilization of departmental equipment as well as professional collegial support. My doctoral committee members at the University of Florida, Chair, Leslie Sue Lieberman; Russ Bernard; Mary Ann Burg; John Moore; and Sharlene S impson are acknowledged with my sincere thanks their guidance, support and endurance of my process, and with gratitude for the privilege of their mentorship. Donna M. Edwards, of, Mountain Spirit Physical Therapy, Knoxville, Tennessee, is recognized for her assistance with participant recruitment and for her willingness to provide clinical facilities for data collection. Frank Ling, Thomas St ovall, and Robert Summitt of Womens Health Specialists, Memphis, Tenne ssee are gratefully acknowledged for their assistance with participant recruitment and for providing clinical facili ties for data collection. The members of the Nashville Alliance for Sexual Health, and Lynne Odom, program coordinator, in particular for providing assi stance with participant recruitment, moral support and professional insights throughout the process. The Intersti tial Cystitis Association of Nashville, Becky Wilson, President, provided a ssistance with participan t recruitment and the continual reminder of the life wo men with pelvic pain lead outside the clinic. The physical therapy faculty at Tennessee State University pr ovided support in the form of release time, collegial advice and utilization of professional equipment and s upplies, which is gratefully acknowledged. This project was supported in pa rt by a Bio-medical Mini-Grant awarded by the Division of Research at Te nnessee State University.

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5 TABLE OF CONTENTS page ACKNOWLEDGMENTS ............................................................................................................... 4LIST OF TABLES ...........................................................................................................................8ABSTRACT ...................................................................................................................... ...............9 CHAP TER 1 CHRONIC PELVIC PAIN IN WOME: A BIOCULTURAL HEALTH PROBLEM ........... 10Introduction .................................................................................................................. ...........10Purpose and Significance ........................................................................................................14Prevalence-An Unspoken, Common Problem ........................................................................ 18Material Consequences ...........................................................................................................24Social and Cultural Correlates ................................................................................................ 26Ethnicity and Race ........................................................................................................... 27Social Class .....................................................................................................................33Education .........................................................................................................................34Age ........................................................................................................................... .......36Gender ........................................................................................................................ .....36Marriage ..........................................................................................................................39Sexuality and Sexual Function ........................................................................................41Abuse and Assault ...........................................................................................................44Self-Efficacy ................................................................................................................. ...48Summary: Chronic Pelvic Pain as a Biocultural Health Problem .......................................... 512 BIOMEDICAL ASSUMPTIONS AND PRACTICES .......................................................... 54Introduction .................................................................................................................. ...........54Challenges to Biomedical Models of Health a nd Healthcare ................................................. 54Clinical Encounters .................................................................................................................59Epidemiology and Social Factors: Etiology versus Context .................................................. 62Disability .................................................................................................................................63Pain:Womens Descriptions and Bi omedical Interpretations ....................................... 65Biomedical Diagnostic Correlates .......................................................................................... 70Body Systems and Biol ogical Correlates ...............................................................................74Reproductive System .......................................................................................................75Urogenital System ........................................................................................................... 79Gastrointestinal System ................................................................................................... 80Musculoskeletal System ..................................................................................................81Psychological Diagnostic Correlates ......................................................................................84Disease Model of Mental Health ..................................................................................... 85Mood Disorders ............................................................................................................... 88Depression .................................................................................................................... ...88

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6 Anxiety ....................................................................................................................... .....90Substance Abuse and Addiction ......................................................................................91Fragmentation and Holistic Biomedical Care .........................................................................923 DESIGN AND METHODS .................................................................................................... 95Introduction .................................................................................................................. ...........95Study Population and Sampling..............................................................................................95Materials and Measurements ................................................................................................ 103Measurement Instruments ............................................................................................. 103Variables ..................................................................................................................... ...105Analysis ................................................................................................................................110Transcription and Coding ..............................................................................................110Statistical Analysis ........................................................................................................ 110Biographical Profiles .....................................................................................................114Text Analysis .................................................................................................................1144 RESULTS ....................................................................................................................... ......116Sample Characteristics ..........................................................................................................116Clinical and Social Correlates .............................................................................................. 120Biographical Profiles ............................................................................................................127Narrative Themes .............................................................................................................. ....140Causality ..................................................................................................................... ...140Productivity ...................................................................................................................143Sexuality ..................................................................................................................... ...147Sexual Behavior-Endure Pain or Abstain? .................................................................... 148Attitudes-Sex and Intimacy ........................................................................................... 150Attitudes-Abuse and Pain are Normal? ......................................................................... 150Fragmentation ................................................................................................................. ......1515 DISCUSSION .................................................................................................................... ...156Social and Demographic Characteristics .............................................................................. 156Work and Productivity ..........................................................................................................164Sex and Sexuality .................................................................................................................168Causality and Diagnosis .......................................................................................................170Fragmentation ................................................................................................................. ......172Conclusions and Future Work .............................................................................................. 174Health Care for Women with Chronic Pe lvic Pain Through a Biocultural Lens ................. 175APPENDIX A MEASURMENT INSTRUMENTS .....................................................................................177B IRB APPROVAL AND INFORMED CONSENT ............................................................... 188C CODING AND TEXT ANALYSIS ..................................................................................... 192

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7 LIST OF REFERENCES .............................................................................................................227BIOGRAPHICAL SKETCH .......................................................................................................254

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8 LIST OF TABLES Table page 1-1 Biocultural Correlates of Ch ronic Pelvic Pain in Wom en ................................................. 534-1 Age and Ethnicity ............................................................................................................1174-2 Education and Ethnicity ...................................................................................................1184-3 Marital Status and Ethnicity............................................................................................. 1184-4 Household Size and Race/Ethnicity .................................................................................1184-5 Ethnicity and Work Status ............................................................................................... 1194-6 Abuse History and Ethnicity ............................................................................................1194-7 Regression Analysis on Pain Intensity with Sexual Intercourse ......................................1214-8 CPP Rank as a Life Problem by Self-Reported Ethnicity................................................ 1244-9 Perceived Cause of CPP by Self-Repor ted Ethnicity and Geographic Location ............. 141

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9 Abstract of Dissertation Pres ented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy BIOCULTURAL CORRELATES OF CHR ONIC PELIVC PAIN IN WOMEN By Patricia Marie King Baker December 2008 Chair: Leslie Sue Lieberman Major Department: Anthropology Chronic pelvic pain (CPP) is common health problem among women that responds poorly to biomedical intervention. Studies examining th e implications of race/ethnicity on health care for women with CPP are scarce. This study utilizes a biocultural approach to examine social and clinical characteristics among a sample of ethnically diverse women seeking biomedical care for CPP. Interview data describe the impact of C PP on social roles and responsibilities, womens explanations of the cause(s) of pe lvic pain and their perceptions of biomedical treatment. Sixtythree women, 15 African Americans, one Hispanic and 47 European Americans participated in the study. Despite the limitations of the small sample size, there was a statistically significant ethnic difference in level of pain intensity with sexual intercourse, (M=8.43, SE=0.69) among African American women compared to (M=6.18, SE=0.49) European American women. There were notable although not statistically significan t ethnic differences in treatment response, ranking of CPP as a life problem and abuse histor y. Themes identified by analysis of interview data related to causality, sexua lity, productivity, and fragmented health care corroborate findings in other studies and illustrate the relevance of conceptualizing CPP within a biocultural framework.

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10 CHAPTER 1 CHRONIC PELVIC PAIN IN WOME: A BIOCULTURAL HEALTH PROBLEM Introduction Wom en of all ages from a variety of ethnic backgrounds and geographic locations experience pelvic pain. (Bergant and Widsch wendter 1998; Campbell, Jones, Dienemann, Kub, Scholenberger, OCampo, Gielen and Wynn 200 2; Golding 1996; Grace and Zondervan 2006; Haefner Khoshnevisan, Bachman, Flowe-Vlencia, Green and Reed 2000; Haggerty, Peipert, Weitzen, Hendrix, Holley, Nelson, Randall, Sope r, Wiesenfeld and Ness 2005; Harlowe and Stewart 2003; Kang S-B, Chung, Lee, Lee and Chang 2007; Kyama, DHooghe, Dbrock, Machoki, cai, and Mwenda 2004; Jamieson and Steege 1996; Mathias et al 1996; Spinhoven, Roelofs, Moene, Kuyk, Nijenhuis,Hoogduin, and Van Dyck 2006; Zadinsky and Boyle 1996) This study is focused on African American and European American women residing in the southern United States, primarily in Tennessee, who live daily with chronic pelvic pain. For most women, pelvic pain is an intermittent physical discomfort expected to occur in association with the natural bodily functions of menstruation, pregnancy, ch ildbirth, and menopause. Such normal intermittent pelvic pain may cause women to limit their physical and/or social activities for brief periods of time either by physi cal necessity, cultural cust om or both. For other women, pelvic pain is extremely intense, e volving into an ongoing a nd debilitating condition known in biomedicine as chronic pelvic pain. (Grace 1995; Grace and Zondervan 2004; Howard 2000 a; Reiter 1990; Steege 1998; Ling 1993; Z ondervan, Yudkin, Vessey, Dawes, Barlow, and Kennedy 2001) Women with chronic pelvic pain (CPP) commo nly consult with health care providers across a variety of medical spec ialty areas, often repeatedly s eeking care for several years (Davies, Ganger, Drummond, Saunders and Beard 1992; Grace and Zondervan 2006; Howard

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11 1993; Latthe, Mignini, Gray, Hills, Khan 2006; McGowan, Clark-Carter, Pitts 1998; National Institutes of Health 2002; Ling 1993; Selfe, Matthews, Stones 1998; Stones, Selfe, Fransman and Horn 2000; Zondervan, Yudkin, Vessey, Dawe s, Barlow, and Kennedy1999; Zondervan, Yudkin, Vessey, Jenkinson, Dawes, Barlow and Kennedy 2001); however, population based studies indicate that many wome n experience chronic pelvic pain without seeking biomedical care. (Harlowe and Stewart 2003; Golding 1994; Golding 1996; Grace and Zondervan 2006; Randolph and Reddy 2006; Zondervan, Yudkin, Vesse y, Dawes, Barlow and Kennedy 2001) All the women in this study actively pursued biom edical care for ongoing complaints of chronic pelvic pain. At the time of the study most of the women were under the care of biomedical clinicians specializi ng in the condition. Women who seek biomedical car e for CPP most often consult with gynecologists since the pain is located in the lower abdomen and/or genitalia and is frequently associated with sexual activity and/or the menstrual cycle. Gynecol ogic management traditionally focuses on the reproductive organs. Surgical interventions, in cluding hysterectomy, are commonly conducted in attempts to eliminate pelvic pain. Symptoms often persist post-operatively and sterilization is often a result of treatment for pelvic pain, with or without re solution of the symptoms. (Reiter 1998; Reiter and Gambone 1991; Stovall, Li ng and Crawford 1989; Yasmin, Bombieri, Hollingworth 2005) Despite the sincer e efforts of biomedical practit ioners to establish effective management strategies, health car e seeking for women experiencing chronic pelvic pain is often met with unsatisfactory results, frustrat ing both the women who experience it and the practitioners involved in th eir care.(Grace 1995; Grace and Zondervan 2006 ; Howard 2000a; Latthe et al 2006; Ling 1993; McGo wan, Clark-Carter, Pitts 1998; Na tional Institutes of Health 2002; 2000; Reiter 1990) Women develop a variety of coping and self care strategies in order to

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12 function when effective medical intervention is not obtained, many of which contribute to the invisibility of their condition to family members and co-workers. (Grace and Zondervan 2006; Zadinsky and Boyle 1996) The challenges this condition presents to biomedicine spawned the development of a multidisciplinary professional organization, the International Pelvic Pain Society ( www.pelvicpain.org), and have been the subject of special conferences and research initiatives a t the National Institutes of Health. (A braham 2003; National Institute of Child Health and Human Development 2002) Chronic pelvic pain (CPP) is characterize d by severe emotional, social and physical suffering and encompasses a variety of pain patterns and related symptoms. Some women experience pain that intensifies with the menstr ual cycle, others primarily have pelvic pain during intercourse and others liv e with on-going, unrelenting pain in various locations in the anatomic pelvis. Women with CPP all experience pa in in the pelvis but in a variety of patterns. The pain is most often located in the lower a bdomen (usually unilatera l, meaning primarily on one side of the abdomen) but some women compla in of pain throughout the abdomen and/or in the vagina, rectum, pelvic floor musculature and external genitalia. There are several variations in the temporal patterns associated with pelvic pain. Pelvic pain may be acute (lasting one month or less), recurrent (re-occurring in some type of pattern), or chronic (lasting three months or more by some definitions (Ling 1993; Howard 2000a ) and six months or more by others (Grace and Zondervan 2006) Participants in this study incl ude women with pelvic pain in any pattern as long as the pain is in the pelvic area. Recurrent pelvic pain may be either cyclic, as in the case painful menstrual periods (dysmenorrhea) or epis odic as in the case of pain associated with sexual intercourse (dyspareunia). Sp ecific activities or positions may also trigger recurrent pelvic pain such as sitting, standing, bending, or lifting; stress may also trigger an episode of pelvic

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13 pain. Many women experience pain that is both chronic and r ecurrent; these women describe constant, chronic pain that increases in inte nsity cyclically or ep isodically (either during menstruation, ovulation, intercourse, or other activities such as to ileting, walking, or sitting). This study includes women with pelv ic pain in any temporal patter n as long as a part of that pattern includes pelvic pain that lasted at least 3 months, hence cla ssifying it as chronic. Women with chronic pelvic pa in are much more likely than other women to have been exposed to violence or abuse (physical or sexu al and particularly ch ildhood sexual abuse), to have a history of sexually transmitted diseases and to be diagnosed with depression and/or anxiety, including post-traumatic stress syndrome. (Champion et al 1995; Golding 1994; Golding 1996; Fry, Crisp, Beard and McGuigan1993; Lampe et al 2000; Latthe et al 2006; Reiter, Shakerin and Gambone 1991; Rosenthal 1993; Turk 2002; Walker 1988) These complicating social and psychological characterist ics appear to contribute, at leas t in part, to the resistance of the condition to biomedical management (Latth e et al 2006; Steege 1998) as well as to the ethnocentric perception among some practitioners that the condition is less than a real medical problem. (Grace1995; 2000; Theve-Gibbons 2000) Table 1-1 provides a summary of social, psychological, biological and clinical characteristics with known correlations, both positive and negative, with CPP. Although relatively few studies of CPP in women report racial or ethnic data, it is clear from available reports that CPP occurs among wo men from a broad range of racial and ethnic backgrounds. (Campbell et al 2002; Golding 1996; Haefner et al 2000; Haggerty et al 2005; Latthe et al 2006) With the exception of a stronge r association between black race and/or African American ethnicity and menstrual related CPP (Latthe et al 2006), clea r racial or ethnic epidemiological patterns are not depicted. A few studies attempt to explai n reported relationships

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14 between race/ethnicity and symptoms asso ciated with CPP (Golding 1994; 1996; Haggerty 2005); however, there is a paucity of study providing ethnocultural, socio-cultural or biocultural perspectives on the condition and its racial/ethnic correlates. Although information is available that sheds light on the associations between race, ethnicity and CPP, th e basic epidemiological facts are not yet clear and comparative ethnocultura l information specific to chronic pelvic pain in women is not yet available. Purpose and Significance The purposes of this study are to evaluate relationships am ong sele cted ethno-cultural, psychosocial and biological variables in a sample of women seeking biomedical health care for chronic pelvic pain; to contribu te to the body of knowledge that de scribes the releva nce of social context to health care for women with chronic pelv ic pain; and to contribu te to the development of biocultural approaches to health care for wome n with chronic pelvic pain. The specific aims are to describe the social roles and responsibili ties in which women with chronic pelvic pain are routinely engaged; to describe womens percepti ons of how pelvic pain influences their daily functioning; to provide an account of womens explanations of the causes of their chronic pelvic pain; to investigate womens perceptions of biom edical treatment for chronic pelvic pain; to determine if there is statistically significant racial and/or ethnic variation in selected clinical and social characteristics known to occur among wome n with chronic pelvic pain among the sample of women who particip ated in the study. At this point in time there are not studies on record that were sp ecifically designed to compare clinical characteristics and/or illness experi ences among racially or ethnically diverse women with CPP. The importance of a comprehensive understanding of the social aspects of pelvic pain to efforts aimed at improving h ealth care for the co ndition are acknowledged by biomedical practitioners and social scient ists (Abraham 2003; Grace and Zondervan 2006;

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15 National Institutes of Health 2002; Selfe et al 1998), signifying the relevance of anthropological perspectives to the development of the body of knowledge on CPP in women. The importance of increasing the attention of anthr opologists to matters of race and ethnicity in health care was recently argued by Gravlee and Sweet (2008) who recommended, among other strategies, the advancement of biocultural appro aches to the study of health and health care by anthropologists. The cross-cultural perspective of anthropologist s facilitates more appr opriate uses of the concepts of race and ethnicity in health care research contributing to a more extensive understanding of cultural differe nces and health disparities. (Gravlee and Sweet 2008; Oths 1999; Wardlaw 2003) Cross-cultural studies and critiques of biomedical approaches to pregnancy, menopause and menarche conducted by an thropologists and feminists, (Beyene1986; 1989; Chodrow 1999; Daly 1978; Davis -Floyd 1994; Davis-Floyd 2001; Douglas 1975; Martin 1988; 2001; Scheper-Hughes 1992; Schepher-Hughe s and Lock 1987;Grace 1995; 1998; 2000; Lock 1994; 1998; 2002) and simila r studies on chronic pain (B ates 1996; Bates and Edwards 1996; Good, Bodwin, Good, and Kleinman 1992) info rm the current biocultural understanding of CPP in women; however, studies specifically focused on building the body of knowledge that describes the social context of CPP, including th e relevance of race and ethnicity are needed. The complex array of biological and social fact ors associated with CPP makes it clear that biocultural perspectives are essential to the deve lopment of more effective approaches to health care for the condition. (Abraham 2003; Grace 1 998; 2000; Grace and Zondervan 2006; Haefner et al 2000; Haggert y et al 2005) The broad issue addressed by this study is the relevance of social context to health care for women with CPP. The specific aims are to gain an understanding of the womens perspective on carrying out their social roles a nd responsibilities while living with pelvic pain; to understand

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16 womens beliefs about the causes of their pain; a nd to determine if there are racial or ethnic variations in those beliefs and e xperiences and/or in the clinical and diagnostics correlates of CPP among the women in the sample An ethnographic account from the perspective of women in the study sample describes the e ffects of pelvic pain on their da ily lives and their explanations of the cause(s) of pelvic pain. The current body of knowledge outside of this project that describes CPP from the point of view of women living with the condi tion includes interview based accounts of womens experiences during medical encounters for pelvic pain (Grace 1995); narrative accounts of how women describe the pain they feel (Grace and MacBride-Stewart 2007b); a description of the physical activity limitations they expe rience both at work and at home because of CPP that was derived from a postal survey (Grace and Zondervan 2006), and an interview based report of womens feelings of shame, stigma and loss of sexuality and femininity. (Theve-Gibbons 2000) Most of the research that inves tigates CPP from the perspectives of women with the condition was conducted in New Zealand (Grace 1995; Grace and Zondervan 2006); the women in those studies were predominately of European ethnicity, however, some native Maori women were in cluded. Theve-Gibbons (2000) study included twelve women residing in the US and one living in the UK; twelve were white-non-Hispanic or Latina and one was Hispanic. This study adds an account of how black African American and white European American women, in the US desc ribe the causes of CPP and the effects of the condition on their lives at home, at work and in the community to the current discourse on CPP in women; it also contributes an examination of racial and ethnic di fferences in the known diagnostic and social correlates of CPP to the relatively sparse literature that describes racial and/or ethnic correlates of the bi omedical profile of the condition.

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17 Sexual abuse/assault and pelvic inflammatory disease (PID) are the only two factors that demonstrated a positive associati on with all types of chronic pelvic pain (painful menstruation, painful intercourse, and non-cyclic/n on-episodic pelvic pain) in a recent systematic analysis of the literature. (Latthe et al 2006) Studies indicate that compared to European American women and Latina women, African American women at greater risk for developing reproductive symptoms (which includes pelvic pain) when exposed to sexual assau lt (Golding 1996); are at greater risk for the development of sexually tran smitted diseases, which are known to lead to PID (Champion et al 2005); and are at greater risk for cyclic pelvic pa in or dysmenorrhea (Latthe et al 2006). To determine if ethnic co rrelates of characteristics of ch ronic pelvic pain reported in previous studies were consistent among the wome n in this study; and, to further explore the relationships between ethnicity and biomedical characteristics of pelv ic pain, the following research questions were developed: Are there ethnic differences in pain intensity, pain intensit y with sexual intercourse and acceptable level of pain among a sample of women with chronic pelvic pain? 1. Are there ethnic differences in the review of systems or diagnostic profile for reproductive, urological, gastrointestinal, musculoskeleta l, and psychological systems among a sample of women with chronic pelvic pain? 2. Are there ethnic differences in the perception of treatmen t effects among a sample of women with chronic pelvic pain? 3. Are there ethnic differences in perceptions of how chronic pelvic pain impacts life among sample of women with the condition. 4. Are there ethnic differences in history of sexual or physical abuse or assault among a sample of women with chronic pelvic pain? Two additional research questions were devel oped to examine associations between sexual abuse/assault and biomedical characteristics of chr onic pelvic pain as there is implication in the

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18 literature that the presence of sexual abuse/assaul t may intensify symptoms and/or interfere with response to biomedical care. The additional questions addressed in this portion of the project are: 5. Are there significant differences in the per ception of treatment effects between women with a history of abuse or assault and women without a history of abuse or assault among a sample of women with chronic pelvic pain? 6. Are there significant associations between pain variables and sex/physical abuse variables among a sample of women w ith chronic pelvic pain? Prevalence-An Unspoken, Common Problem Many wom en are reluctant to discuss sexual prob lems with health care practitioners much less friends and family members, creating a social sile nce about conditions such as pelvic pain and incontinence.(Grant 2005; Mi tteness and Barker 1995; Porrett and Cox 2007) That lack of discourse negates opportunities for women to fi nd professional and personal support and creates the impression that their condition is unique and uncommon.(Grace 1995; Theve-Gibbons 2000) The privacy and embarrassment with which wo mens bodies, and sexual, reproductive and gastrointestinal functions, are vi ewed all likely contribute to th e social silence that surrounds CPP. (Mitteness and Barker 1995; Porrett a nd Cox 2007; Theve-Gibbons 2000) The condition itself is difficult to describe and like many chronic pain conditions is essentially invisible. The social stigma or taboo of discussing sexual or pelvic problems can al so impact choices women make about seeking health care and social support. (Theve-Gibbons 2000) When women do seek care for CPP, health care practitioners ofte n ignore or minimally attend to concerns related to CPP when they are presented clinically, furt her marginalizing and silencing women with the condition as they often come to believe the pain th at experience is not rela ted to a viable medical problem, and a medical explanation is needed to validate their complaints. (Grace 1995; TheveGibbons 2000) Many women in this study expressed su rprise to learn that I was studying pelvic pain as they did not realize that other women also experien ced it. Similar viewpoints were

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19 expressed by women in other studies of CPP. (Grace 1995; Theve-Gibbon 2000) One study participant in Memphis commented on the large number of files I ha d in the file box by my desk; I explained there was a separate file for each pe rson who agreed to be interviewed, she replied: This sounds weird but, do a lot of people have pe lvic pain? It is weird that a lot of people are stricken with it.-M27 Other women interviewed commented on their perception that the condition was unique to them and, from their perspective, unhear d of by most medica l professionals: Nobody has ever heard of anyone having butt pai n. I just dont understa nd that. I feel like a freak. M51 People dont know, but sometimes people have something that doctors never said or never acknowledged. M52 Despite the social silence surr ounding pelvic pain, and contra ry to the perception of many women with the condition, chronic pelvic pain is, in fact, very common, accounting for at least 10-20% of all outpatient gynecology visits in the US. (Howard 1993; 2000a) As early as 1958 pelvic pain was reported the most common complaint presented by women to gynecologic physicians in the United Kingdom. (Morris and ONeil 1958) Community based studies indicate that up to 40% of women expe rience pelvic pain without ac tively seeking medical care (Harlowe and Stewart 2003), implying that preval ence estimates based on medical utilization are likely low. (Harlowe & Stewart 2003; Jamies on and Steege 1996; Mathias et al 1996) In 1999 a clinically based study estimated the prevalence of chronic pelv ic pain at 38/1000 for women aged 15-73 in the UK, a rate similar to that of more well known conditions such as low back pain and asthma. (Zondervan et al 1999) A follow up community based study in the UK (Zondervan, Yudkin, Vessey, Dawes, Barlow, and Kennedy 2001) i ndicated rates of CPP in the population of that country are most likely 24%. Other repo rts estimate 15% of women in the United Kingdom aged 18-50 experience CPP. (Stones, Selfe, Fran sman and Horn 2000) The estimated prevalence

PAGE 20

20 in New Zealand, based on a population study, is 25.4%. (Grace and Zondervan 2004) A Gallup poll was used to examine prevalence in the US finding 16% of women experienced pelvic pain; 11 % of the women with CPP reported limiting time sp ent in home activities because of the pain, 4% reported missing at least one day of work per month, and 16% were currently taking medication to manage it. (Mathias et al 1996) Painful sexual interc ourse is occurs in up to 41% of women with CPP. Collett (1998) compared complaints of pain ful intercourse in women with and without CPP, finding wome n with CPP much more likely to experience pain with intercourse; in addition to pain during sexual intercour se, women with CPP may also experience post-coital pain lasting hour s or days. (Nickel et al 2007; Randolph and Reddy 2006; Zondervan, Yudkin, Vessey, Jenkinson, Barlow and Kennedy; Veri, Verit and Yeni 2006) A recent US community based study on a particular urological subset of CPP, interstitial cystitis (IC) estimated IC was likely affecting 4% of women in the US; they based the estimate on their study results and the 2000 census. (Ibrahim, Ananiaas, Diokno, Killinger, Carrico and Peters 2007) A clinical study conducted in a primar y care setting that used symptoms as well as physical screening procedures to identify cases of IC found 13.1% of t hose initially surveyed (357 of 2043) had findings consistent with IC a nd 14.3% were diagnosed w ith the condition after continuing work up. (Rosenberg, Page and Hou ssard 2007) The 13.1% included 17.5% of the women and 8.3% of the men in their study indicati ng a gender difference in IC prevalence, with a higher occurrence among women. Mirkin et al (2007) estimated the prevalence of endometriosis, the most common gynecological di agnosis associated with CPP, at 1.1% for women ages 30-39 and .7% for women 18-55 years of age in a US study that used medical coding in commercial insurance claims to dete rmine prevalence. Irritable bowel syndrome (IBS), a gastrointestinal subset of CPP reportedly accounts for 12% of all primary care visits in

PAGE 21

21 the US and is the most common diagnosis ma de by gastroenterologists. (Fisher 2002) IBS symptoms are reported by approximately 15% of adults in the US affecting about 3 times as many women as men.(Howard, Perry, Carter, El -Minawi 2000 p. 238) Reports indicate IBS occurs in 50-80% of women with CPP. (Longs treth, Preskill, Youkeles 1990; Walker, Katon, Jemelka et al 1991) In India it is reported that IBS occurs more frequently among men than women and that men and women are affected equally in Africa. (Fis her 2002) IBS is the most common diagnosis made by gastroenterologists a nd accounts for 12% of visits to primary care doctors in the US. (Fisher 2002) Studies on care seeking for IB S indicate individuals with IBS symptoms are most likely to seek health care if they have psychol ogical disorders than individuals with IBS symptoms but no identi fied psychological distress. (Fisher 2002) As previously mentioned, relatively few studies of CPP in women provi de accounts of race or ethnicity. Latthe et al (2006) and colleagues extensively exam ined 110 articles to identify predisposing factors for CPP; although their analysis identified statistically significant associations between various so cio-demographic characteristics, including race/ethnicity and CPP, relatively few of the articles in the study reported data on age, ra ce, ethnicity, or SES. Pelvic inflammatory disease (P ID) and childhood sexual abuse we re both identified as risk factors for all types of pelvic pain (dysmenorrh ea or painful menstruation; dyspareunia or painful intercourse; and non-cyclic/non-ep isodic pelvic pain) in thei r review and several other predisposing factors were also identified, however, only PID and childhood abuse were associated with all types of CPP. (Latthe et al 2006) Sexually transmitted diseases (STD), which are more common among minority women, are know n to increase the risk for PID.(Champion 2005) Several studies support an increased risk among African American a nd other racial/ethnic minority women for all types of pelvic pain du e to increased exposure to abuse, assault and

PAGE 22

22 STDs (Champion et al 2005; Golding 1994; Gold ing 1996). In contrast, Grace and Zondervan (2006) report statistical ly significant negative as sociations between non-European ethnicity and CPP in their population based study (postal surv ey) conducted in New Zealand, however, they also noted that non-European women (primarily Maori) were repres ented at a lower rate in the study population (10.3%) than in th e population of New Zeala nd (14.2%). In a study of a largely minority urban populati on, Haggerty et al (2005) found non-black race predicted CPP. Other reports find vulvadynia and interstitial cystitis (IC), two diagnostic subsets of CPP, more occurring more commonly among non-Hispanic white women than African American women. (Arnold, Bachman, Kelly, Rosen and Rhoads 2006) The most recent study specifically undertaken to examine the prevalence of CPP in the US was telephone survey published in 1996 that reported no significant racial or ethnic differences in occurre nce rates (Mathias et al 1996), a finding that is interesting since a variety of predisposing factors point toward an increased risk for minority women and girls (Campbell et al 2006; Champion et al 2005; Golding 1994; Golding 1996; Haggerty et al; Mahon, Temkit, Wang, Rosenman and Katz 2005) but may be supported by studies finding significance associ ations between ethnic ity and pelvic pain symptoms disappear when SES (Portenoy, Ugarte, Fuller and Haas 2004) and/or other factors such as history of abuse and assault (Golding 1996) are controlled. Also of interest is the 10% difference in prevalence rates between the US and the UK and New Zealand which it has been suggested may be explained by cultural differences in willingness to report symptoms. (Grace and Zondervan 2006) The majority of cases of CPP are reported during the reproductive years with the average age considered to be in the early 30s (Howard 2000; Steege 1998) however, age differences are reported between the various subtypes of CPP. Endometriosis is the mo st commonly diagnosed

PAGE 23

23 gynecologic cause of non-cyclical pelvic pain an d is a condition that occurs primarily during reproductive years. (Howard 2000a; Rips and Martin 1993) Cyclic (menstrual) CPP was recently reported more common among younger women in a population based study in New Zealand (Grace and Zondervan 2006), consistent with th e findings of Latthe et al (2006) that women under 30 years of age were more likely to experi ence cyclic CPP. Risk for pelvic pain with dysmenorrhea is increased by a history of sexual abuse, age less than 30, early menarche, thin body type (Body Mass Index (BMI) less than 20, irregular menstrual flow, history of premenstrual syndrome (PMS) or PID and high levels of stress. Risk for pelvic pain with dysmenorrhea is decreased by marriage, fish intake physical exercise and higher parity. (Latthe et al 2006) Early menarche increases the risk for both pelvic pain and PM S. (Latthe et al 2006; Barnard, Frayne, Skinner and Sullivan 2003) Low BM I is associated with cyclic CPP (Latthe 2006) although higher BMI is repor ted with PMS. African American women are considered to be at increased risk for PMS and lesser risk for CPP than other women. Higher BMI is a known health concern among African American women associated with many other obesity related health conditions such as di abetes, heart disease and breas t cancer. (Digham 2000) The prevalence of menstrual symptoms in a sample of women who used Ve terans Administration (VA) ambulatory services was examined to assess the magnitude of difference in health status in women with these symptoms compared with t hose without. Data was co llected using a selfadministered questionnaire, wh ich included the SF-36. The indepe ndent variable was menstrual symptoms. Using two independent sample t-tests, SF-36 scores were compared between women with and without menstrual symptoms. There wa s a surprisingly high prevalence of menstrual symptoms (67%). Sampling bias was suggested as an explanation due to the high prevalence of

PAGE 24

24 co-morbidity, depression, and posttraumatic stress disorder known to occur in military populations. (Barnard et al 2003) Although most cases of pelvic pain begin with or after menses, non-menstruating girls and adolescents are also affected as are post-menopausal women. (Gale, Ling, King, Myers and Muram 1990; Schroeder and Sanfilippo 2000) Early age onset of pelvic pain is associated with pelvic inflammatory disease (PID) as well as a history of menstrual difficulties (Champion 2005; Schroeder, B., Sanfilippo and Hertweek 2 000) and childhood sexual abuse. (Champion et al 2005) As was already noted, minority adolesce nts have higher rates of sexually transmitted diseases which are considered causative in the development of PID, increasing the risk for CPP among young minority girls. (Champ ion et al 2005; Golding 1 994; 1996; Haggert y et al 2005) Early maternal age also appears to increase th e risk for PID in the post-partum year, which would also increase risk of developing C PP among younger women and girls. (Mahon et al 2005) Material Consequences Although the m edical costs associated with C PP have not been examined extensively, the economic burden for the medical management of pelvic pain is considered to be high both individually and at a societal level. (Davies et al 1992; Gao, Ou tley Botteman, Spaulding, Simon, Pashos 2006; Mathias et al 1996; Mirkin et al 2007; Stones et al 2000; Zondervan et al 1999) Determining the medical costs of CPP is complicated by the variety of diagnoses, biomedical specialties and treatments involve d as well as lack of information about utilization of alternative medical treatments for the condition. Estimates of medical costs often focus on one specialty area or one particular pelvic pa in diagnostic group. The actual cost s are likely much higher than estimated. Surgical costs for management of uterine fibroids alone, one pa rticular condition often thought to cause pelvic pain (Rapkin 1986), was estimated at 1 billion per year for about 175,000

PAGE 25

25 hysterectomies. (Perry 1998) In the 1990s CPP accounted for over one third of all gynecologic laparoscopic procedures in the US. (Stovall, Elder and Ling1990; Howard 1993; Howard 2000a) According to the Royal College of Obstetri cians and Gynecologists over 10,000 laparoscopies were performed for unexplained pelvic pain in the United Kingdom in 1978. (Fry, Crisp, Beard, McGuigan 1993) Howard (Howard 2000a) reports es timates of over two billion dollars per year for the direct and indirect costs of CPP in women in the United St ates. Economic impact estimates for CPP were reported over a decade a go in the amount of $274 million per year in the UK (Davies et al1992) and $881 million per year in the US. (Mathias et al 1996; Davies et al 1992; Mirkin et al (2007) examined commercial in surance claims for women between the ages of 18 and 55 in the years 1999-2003 to determin e the prevalence and economic impact of endometriosis, the most common gynecological cause of CPP. They found that medical costs per patient per month (PPPM) were an astoundi ng 63% higher for women diagnosed with endometriosis than age matched cohorts, largel y related to higher hospi talization and surgery rates. Gao et al (2006) et al al so attempted to estimate the medi cal costs of endometriosis, using review of published research reports and public databases such as the Healthcare Cost and Utilization Project and National Medical Ambulatory Care Survey/National Hospital Medical Ambulatory Care Survey. They commented on the scar city of information related to the costs of endometriosis, particularly ambulatory services costs. They concluded that the costs of endometriosis were exceptionally high and primar ily driven by the expenses of hospitalization and surgery; they also found that from 1993 to 2002 the length of hospitalizations for endometriosis progressively declined, however, the costs increased by 61% during that time. Although clear estimates of the co sts of all types of CPP are not available, it is evident the medical costs associated with the condition are high. In addition to the medical costs, womens

PAGE 26

26 productivity is often negatively affected both in and out of the home by pelvic pain. (Grace and Zondervan 2006; Mathias et al 1996) Time off work, job loss and/ or other occupational changes are all reported by women with pelvic pain as a consequence of the physical and mental changes associated with the condition.(Grace and Z ondervan 2006) The time involved in acquiring medical care, recovery, and recuperation interf eres with domestic res ponsibilities, recreation, leisure, family and social obligations. (G race and Zondervan 2006; Mathias et al 1996) Social and Cultural Correlates The three dom ains of culture, social struct ure (social organization, social categories, kinship and interpersonal relati onships), infrastructure (economic, technologic and material aspects of culture) and suprastructure (ideology, belief systems, cognitive models and symbols) are all relevant to understanding disease, illne ss and medical care. Anth ropologists distinguish diseases as conditions identifie d by objective measure or obser vation of clinical signs and illnesses as conditions identified by an individual s sense of not being well. (Brown, Barrett and Padilla in Brown 1998; Hahn 1995; Kleinman, Ei senberg and Good 1978) Perspectives from medical anthropology highlight the social context of health, cl arifying relationships between social structure, cultural mean ings, material culture as well as biological variation on health problems and medical care. Cultural appr oaches to medical anthropology emphasize understanding belief systems and ethnomedicine, the social construction of illness the social production of health and cross-cultural compar isons. Biocultural approaches emphasize how human adaptation to environments influences hea lth and includes examination of evolutionary influences on health and disease, human biological variation, as well as the political and cultural ecology of health and medicine (medical eco logy). (Brown, Barrett a nd Padilla 1998; Martin 1992; Margolis 1984; McElroy and Townsend 1996; Singer 1986) Understa nding how biological and social variables interact to influence the health and illness expe riences of women with

PAGE 27

27 chronic pelvic pain facilitates our ability to reach valid and useful conclusions about the relevance of social facts and social cont ext to health care for this condition. Ethnicity and Race Correla tions between race/ethnicity and certain clinical characteristics of CPP are reported (Golding 1996; Haefner et al 2000; Harrop-Griffiths, Katon, Walker, Holm Russo and Hickok 1988; Latthe et al 2006; Wesselmann 2002) and cultu re specific practices such as female circumcision or female genital cutting are known to increase the risk for CPP. (Latthe et al 2006) Golding (1996) studied reproductive and sexual symptoms in an ethnically diverse group of women from two communities (North Carolina and Lo s Angeles) as a part of the Epidemiologic Catchment Area study. Data regarding sexual assau lt history, sexual symptoms and reproductive symptoms were collected from 3,419 randomly se lected women, 362 of whom had a history of sexual assault. European Amer ican women comprised 51.7% of the study sample, 21.3% were African American, 22.5% were Latina and 4.5% were of other ethnic groups. Positive associations were identified between both repr oductive symptoms (menstrual irregularities, menstrual pain, abnormal menstrual bleeding) and sexual symptoms (painful intercourse, sexual indifference, arousal disorders) and sexual a ssault history that was strongest for African American women. African American women were more likely to have experienced physical threats during sexual assault (89.3% of African American women w ho were assaulted were also physically threatened) than other women who were assaulted (65.2% of Latinas, 63.4% of European American women and 41.9% of women from other ethnic groups); when physical threat was controlled, the sta tistical effect of African Amer ican ethnicity on reproductive symptoms disappeared. (Golding 1996) One of the study conclusions was that risk for unexplained reproductive symptoms was related to a particular type of se xual assault, (assault associated with physical threat) and that the risk for that type of sexual assault was stronger for

PAGE 28

28 African American women. In a ddition, reproductive health problems were found to be more common if women were assaulted by strangers and African American women reported more assault by strangers than other women in the study. (Golding 1996). Goldi ng suggested that the stronger associations between assault and re productive problems among African Americans may be associated with chronic stress of racism; how ever, the study was not designed to support that suggestion. Campbell, Licnty, Sturza and Raja (2006) examined relationships between sexual assault and gynecologic problems among a predom inately African American group of female veterans. Consistent with Goldings (1996) study, they found signifi cantly more gynecologic problems among women who were assaulted and they further identified symptoms more likely with increased physical threat during the assault. Different from Golding, they found more sexual symptoms associated with intimate partne r assault than with stranger assault. Golding (1996) found development of sexual symptoms (painf ul intercourse, sexual indifference, arousal difficulties) were most strongly associated with multiple, nonviolent incidents of unwanted intercourse with a spouse (the re port did not include reference to boyfriend or significant other assaults); multiple episodes of assault as well as assault accomplished by persuasion rather than physical thereat was also associated with the development of sexual symptoms in the Golding study. Golding suggested assaults perceived as rape (stranger assaults) were more positively associated with reproductive symptoms and that non-stranger assaults (spouse or acquaintance) that were perhaps not perceived as rape were mo re positively associated with sexual symptoms. Ethnic differences in the biol ogical aspects of reproductive or gan disease are described in the literature with more aggressive tissue pa thology reported for African American women in both uterine and breast cancer. (Dignam 2000) Racial/ethnic diffe rences in physiologic aspects of hypertension as well as treatment effects are reported for African American women. (Quan,

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29 Kerlikowski, Gueyffier and Boissel 2005) Hype rtension and conditions of the cardiovascular system may seem unrelated to the organic patholog ies associated with CPP, however, at least one report connects systemic hypertension in black women with uterine leiomyomata. (Rubin and Ford (1974) Leiomyomata are benign neoplasms of smooth muscle fiber; the term is synonymous with fibroid, fibromyoma & myom a in gynecology, which are common diagnostic correlates of CPP. The uterine lining is a highly vascularized tissue and connections between vessel pressure and end-organ remodeling are physiologic processes affected by vascular pressure. Common perception among health profe ssionals is that endom etrioses is not as common among women of African origin as am ong white women, however; it is a common reason for gynecological surgery among African Am erican women. (Kyamaet al 2004) It is currently not clear if lack of endometriosis in indigenous African wome n is due to lifestyle differences or if disparities in health care technology and traini ng create a situation where the condition is not readily recognized or treated. Racial/ethnic diffe rences in obesity rates and body image attitudes might also influence the experien ce of CPP in women but variations in these characteristics have not been explored am ong diverse groups of women with CPP although body mass index (BMI) is correlated with and risk for dysmenorrhea. (Latthe et al 2006) Although pain, menstruation, sexual inte rcourse, childbearing and menopause are experiences common to all women, the manners in which women respond and interpret these experiences are influenced by ethnocultural be liefs and attitudes. (Beyene 1989) Normal biological events for women, menses, pregnancy, childbirth and menopause are all associated with pain. The changes womens bodies undergo are uncomfortable, physically challenging, and functionally and socially limiting but also are a part of normal, everyday life. The normally occurring pain may contribute to the tendency to normalize pelvic pain in women as something

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30 that women get just as they get thei r period. (Grace and MacB ride-Stewart 2006) Differences in response may be related to soci al role or status ch anges associated with reproductive status, or, as Beyene (1989) suggest ed in her work comparing Greek and Mayan womens reproductive lives, cultur al specific differences in repr oductive activity, such as birth patterns, may impact physiology as well as social interactions. Folk illness and folk remedies and can modify decisions to report symptoms as well as become barriers to effective communication between practitione rs and patients. (Kleinman, Eisenberg and Good 1978) Intraethnic variation also occurs so that unique aspects of ethnic customs can vary by country, geographic region, or even neighborhood. Within ethnic groups, gender differences exist in roles, attitudes, beliefs and behaviors as well as biological that can impa ct health, particular health in a sex related condition such as CPP. Few published reports on CPP in women consider the influence of et hnocultural attitudes, beliefs and behaviors on the pain and other sy mptoms women experience; however it is likely that differences in the psychologi cal and cognitive characteristics associated with ethnicity as well as related health behaviors, sexual and reproductive practices influe nce the overall clinical picture and response to care. Studies that ex amine ethnocultural aspect s of menopause (Beyene 1989; Leidy Seivert 2006), menstrua tion (Beyene 1989), child bearing (Davis-Floyd 1994; 2001; Scheper-Hughes 1992; Sargent 1989; 1991), genital operations (Sch eper-Hughes 1991; SchellDuncan 2003; Shell-Duncan and Hernlund 2001 ) and chronic pain (Bates 1996, Good, Bodin and Kleinman 1992) support the concep t that ethnic variations releva nt to health care likely exist among women with pelvic pain. The normal physiological changes in womens bodies associated with reproductive process are painful to some degree for most women, however, it is well documented that variations in painful resp onses and attitudes toward the discomforts of

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31 reproduction differ cross culturally. Increased attention to the discomforts of normal reproduction occurs in societies that embrace biomedicine has o ccurred with disease models applied to normal processes such as menopa use, pregnancy and me nstruation. (Davis-Floyd 1994; 2001; Martin 1992) Ethnic vari ations in symptoms associat ed with menopause are reported as are variations in and in attitudes and pract ices related to sexuality among perimenopausal women. (Avis, Stellato, Crawford, Bromberger Ganz,Cain, and Kagawa-Singer 2001; Avis, Zhao, Johannes, Ory and Brockwell 2005) It se ems reasonable to expect that variations in ethnomedical beliefs, attitudes a nd behaviors related to pain, sexuality and reproduction also exist in the clinical manifesta tion of symptoms, functional limita tions and treatment responses in women with CPP. The incongruence of ethnocul tural diversity in symptoms, practices and beliefs with the predominately Euro American perspectives of US and British biomedical practitioners likely contributes to the difficulties women are repor ted to experience in acquiring satisfactory health care for pe lvic pain. (Grace 1998; 2000) Cultural practices that induce pain can alter physiologic as well as behavioral responses to painful stimuli, particularly when the painful ex periences occur in early life. (Ruda 2002) Studies on pre and postnatal pain experiences describe exaggerated pain behaviors and lowered pain thresholds later in life in child ren exposed to pain in infancy and early childhood. For example, circumcised males reportedly exhibit lower thre sholds to pain and mo re exaggerated pain responses than non-circumcised males beginni ng in childhood and continuing through adulthood. (Ruda 2002) Studies that examine chronic pain fro m cultural and biocultura l approaches (Bates 1996; Bates and Edwards 1992; Good et al 1992) inform our understandi ng of the lives of women with chronic pelvic pain, however, a focu sed examination of the contribution of ethnicity

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32 and other social attributes to the experiences of women with C PP are needed to support more efficacious medical management of this particular condition. Cultural differences in attitudes, beliefs and be haviors related to reproductive symptoms as well as changes in reproductiv e status such as menarche, pregnancy and menopause can all influence the interactions betw een women with CPP and health care. The most obvious barrier created by cultural diversity and the easiest to ad dress is language differe nces. Clinical service providers in the United States ar e required to provide translation or interpreting services for patients and clients who are not able to communicate in English. In addition to language, social standards regarding appropriate communication for members of a pa rticular gender vary, and can vary again when the communicatio n is related to health and again when directly related to interacting with health care pr actitioners. Even when women sh are a cultural background with their health care providers, social expectations, attitude s and beliefs can interfere with effective communication. Culture bound perceptions of pelv ic pain can impede patient-practitioner interactions when women seek health care for a variety of conditions (Dressler 1998; HeurtinRoberts and Reisin 1998), likel y including CPP, however, no st udies to do have evaluated clinical interactions focused on cultural differe nces between women with CPP and their health care practitioners. The health belief model (HBM) is a classic tool for identifying differe nces in the health beliefs of patients and practitioners that can be used to foster effective, socially informed, clinical communication. (Kleinman, Eisenberg and Good 1978) The HBM was utilized as the basis for the guiding questions utilized in the interviews in the studies during inquiry regarding the causes of CPP. (Appendix 1) Differences are expected in the health beliefs between diverse racial and ethnic groups, but also between biomedical pers onnel and lay individuals in their care. Baer,

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33 Weller, de Alba, Javier and Sa lcedo (2008), however, found more similarity than differences in lay and professional views on causes and treatmen ts for the common cold in a recently reported cross-cultural study. Likewise, in Graces work in New Zealand (1995), most of the women patients shared a racial and ethni c background with their male pract itioners and most expressed beliefs in a biomedical disease model of pelvic pain; both women and their practitioners were frustrated by the biomedical diagnostic proce ss which did not produce a an effective plan of care.(Grace 1995) Social Class Wom en across the social and economic spectrum are affected by chronic pelvic pain; there is, however, limited study on class a nd CPP. Selfe et al (1998) ex amined class in their study of 105 women seeking care for CPP in a British hos pital gynecology outpatien t clinic. They used the United Kingdom Registrar Generals clas sification system (an occupational based classification system) to operationalize class. Th e womans partners occupation was utilized for women not employed outside the home. (Selfe 1998) In the Selfe study, social class was not significantly related to outcomes to care; relatio nships between class and other variables were not reported in their study. The most detailed insight into the rela tionship of class to the pelvic pain experience in women is found in Goldi ngs (1996) examination of sexual assault and reproductive and sexual symptoms. Women with lower education and lower income were more likely to have reproductive symptoms after assau lt than women with higher levels of either income or education. (Golding 1996) They f ound that less educated women and women with less income who were physically or sexually assau lted were more likely to have reproductive and sexual symptoms than women with higher socioeconomic status who were also assaulted. Spouse assaults were more likely in lower educ ated and lower income women; specific reference to boyfriends or significant ot hers was not made in their report although they differentiated

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34 assaults committed by strangers. Income was unrelated to the occurrence of an assault or the specific circumstances of assault. Specific circum stances of assault referred to a comprehensive group of characteristics including age at time of the incident, number of incidents, type of pressure, physical threat, offenders identity, de gree of sexual contact, emotional reactions and ethnic associations. (Golding 1996) A population based survey of chronic pain (not specifically chronic pelvic pain) among r acially/ethnically diverse Americans found that socioeconomic disadvantage was the most important predictor of disabling pain.(Soar es and Jabolonska 2004) Approximately one third of each group in the sample (Hispanic, non-Hispanic African American and non-Hispanic white) reported chronic pain and although race/ethnicity did not predict pain intensity in their sample, minorities (African Am ericans and Hispanics) had more characteristics positively associated with disabling pain than whites. Factors positively associated with disabling pain were female gender, divorce, less than a high school education and income under $25,000 annually; after multivariate analysis, income and education remained significant. Education Arnold et al (2006) conducted a clinically based study in Ne w Jersey aim ed at identifying predictors of vulvodynia, a subtype of CPP, no ting their sample was predominately white and predominately college educated, consistent with Haefner et al (2000) findi ng that patients in their Michigan clinical sample with vulvodynia were more highly educated than women with other types of pelvic pain and women with headaches. A study of 30 women with pelvic pain in Maine found a lower level of education was significantly correlated with higher incidence of surgical treatment for CPP. Carlson, Miller and Fowler (1994) Carlson et al f ound higher levels of education significantly correlated with more positive treatment outcomes to traditional gynecologic treatments. Addis and colleagues (Addis, Van Den Eeden, Wassel-Fyr, Vittinghoff, Brown, and Thom2006) found sexual dysfunction wa s more likely among women with higher

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35 educational levels in their population based study conducted from Kaiser Permante. Champion et al (2005) studied abuse and PID in minority adolescents and found an association between abuse and lower education among the girls in their stud y signifying a relationship between greater risk not only for CPP, but CPP complicated by the psychological and social rami fications of abuse. Sexual assault history was more strongly relate d to with sexual and reproductive symptoms among women with less income or education in Goldings previously discussed study. (1996) In Emily Martins work (1992; 2001) on women and reproduction, she suggests there is an element of social resistance among all women, no matter their social class, that comes to the surface as symptoms of premenstrual syndrome. She makes a case for this resistance as class resistance, although she conjectures women are as one class more th an of different classes when expressing social resistance through their bodies. She discus ses the monotony, repetition and tedious nature of housekeeping, self keeping and family keeping and womens resistance to those tasks through the socially acceptable feminine functi ons of their bodies. In this study at least one woman relates her symptoms in manner that is c onsistent with Martins suggestion of social resistance through womens bodies This woman is in her mid fifties and works in an upper management position; a corporate change was about to change her daily responsibilities in a way that upset her. When asked about the onset of he r pelvic pain, the exchange went as follows: Was there an event associated with onset of your pain? Yes, it was work; we were moving to a different office; I didnt want to goI retired (from work) due to the pain As is discussed in Chapter 4, the majority of women in this study, across class lines, with the above noted exception and a ve ry few others, verbally expressed emphatic resolve to continue to work more often than they expresse d a resistance to the requi rements of work, either domestic or occupational while li ving with pelvic pain. From th e perspective of Martin, however,

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36 the pain itself may be the manife st expression of their non-verbaliz ed resistance to their social conditions and relations. Age Pelvic pain occurs throughout a wom ens lifespan, closely related to the biological developmental landmarks of menarchy, childbearing and menopause. Cyclic pelvic pain directly related to menstruation is, of course, limited to years between menarche and menopause. Many adolescent girls experience cycl ic pelvic pain from the onset of menses that eventually progresses to non-cyclic pain a nd/or dyspareunia (painful interc ourse). Differences in age of parity and menarche noted cro ss-culturally could have releva nce to CPP but have not been explored although early menarche is positively asso ciated with dysmenorrhea. (Latthe et al 2006) The social and cultural aspects of reproductive transitions influence and are influenced by the phenomena of pelvic pain for many women and gi rls, however, little is known about this condition from a biocultural perspective, more is known about correlatio ns between a womans age and specific biological characteristics of CPP. Although age is often perceived as factor in diminishing libido due to waning female hormones, a sizeable study on sexuality and menopause Avis et al (2005) report sexual intercourse, desire arousal, or physical or emotional satisfaction are not significantly associat ed with perimenopausal age although perimenopausal age was associated with painful intercourse among th e women who participated in that study. Relationship issues, more than bi ological factors, appear to e xplain more of the variance in diminished desire as well as sexual pain among older women. (Addis et al 2005; Avis et al 2005) Gender Although this study is focused on chronic pelvic pain in women it is im portant to note that pelvic pain also occurs in men. It appear s CPP is more common among women (Rosenberg, Page, and Hassard 2007; Unruh 1996), and preval ence studies find women are more likely to

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37 experience a variety of chronic pain syndromes than men. (Portenoy,Ugarte, Fuller and Haas 2004; Unruh 1996) Although gender differences in prevalence, etiology and co-morbidities of CPP have not been examined extensively, they can be described from the currently available literature. Prevalence rates for men are estimated at 15% by some reports. (Antolak 2005; Antolak, Hough, Pawlina, Spinner 2002) Rosenberg, Page, and Hassard (2007) reported gender differences in the prevalence of IC in their prim ary care clinical study. They found 13. 1% of the study sample presented with symptoms consistent with IC; the 13.1 % re presented 17.5% of the women in the study and 8.3% of the men. Pain location is essentially the same for men and women with CPP, with the lower abdomen, rectum, bladder, reproductive organs and genitalia bei ng the affected areas. As with pelvic pain in women, pelvic pain in men is generally assumed to be associated with the reproductive or urogenital systems by both practiti oners and patients. Pros tatitis is a commonly assumed etiology for male pelvic pain, however, pelvic pain in men is, dir ectly related to actual prostatitis in less than 5% of cases. (Antolak 2005) Faulty diagnosis of prostatitis commonly occurs in up to 95% of cases due to lack of lab studies to support the presence of infection or inflammation.(Antolak 2005) Male pelvic pain is strongly associated w ith physical injuries related to sports and occupati on with pudendal neuralgia apparently responsible much male pelvic pain initially assumed to be prostate related.(Antolak 2005) Pude ndal neuralgia is also common in women immediately after vaginal delivery with recovery from the injury usually occurring within 3 months. (El-Minawi and Ho ward 2000) Only one comparative study pain characteristics between men and women with CPP was identified in this review. (Heinberg 2004) Heinberg compared 4 groups of patients, women with CPP, men with CPP, men with low back pain (LBP) and women with LBP. No differen ces by gender or pain site were found in their

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38 sample. Pain severity and pain site explained more of the variance in depressive symptoms than did physical functioning, pain coping, and gender. They found low back pain patients, regardless of gender had more problems with pain related physical functioning than did the pelvic pain group. They also found the pain coping style of catastrophizing more common in LBP than CPP patients, regardless of gender. As with women, impaired sexual function is experienced by men with pelvic pain, with erectile dysfunction and ejaculati on disorders being primary complaints. Sexual and physical abuse and assault have strong associations w ith CPP (Golding 1996; Latth e et al 2006; Walker and Stenchever 1993) and are described by femi nists as expressions of gendered power differences in social structur es and associated gendered atti tudes about sexuality. (Margolis 1984; Martin 1984; Martin 1992; Doyal 1995) The de pression and anxiety associated with CPP likely impact both care seeking behaviors; gende red stereotypes associated with depressed and anxious behaviors may effect practitioners clin ical decisions about th e clinical symptoms. (Baker Miller 1986; Doyal 1987 ; Margolis; Martin 1988; Martin 1992) Early reports on pelvic pain in women attributed the condition to wome n being conflicted abou t traditional female gender roles in domestic and childrearing responsibi lities as well as in sexual intimacy. (GidroFrank, Gordon and Taylor 1960; Walker, Katon, Ha rrop-Griffiths 1988) Chronic pelvic pain in women has also been consider ed a metaphorical expression a ssociated with painful childhood memories acting as a coping mechanism that pr otects them from additional painful, intimate relationships, including sexual ones. (Walker, Katon, Harrop-Griffiths 1988; Rosenthal 1993) The literature supports the contention that the psychological ramifications of childhood abuse may be greater for women than for men. (Schanchter, Stalker a nd Teram 1999) A study of gender differences among abuse vi ctims that used self-report to assess physical and mental

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39 health found that females were more likely than males to report poor physi cal health, anxiety and depression. (Sundaram, Helweg-Larsen, Laursen, Bj erregaard 2004) Gender differences in the experiences of violence as well as gender related differences in health perceptions were suggested as explanations for the differences in that study. Negative pe rsonality traits and disorders including narcissism and borderline personality disorder ar e reported associations with CPP in men. Men, however, seem protected from some of the psychological consequences to childhood trauma that is manifested by wome n based on evidence in a report examining psychological characteristics in a sample of men and women with a history of childhood abuse. (Sundaram, Helweg-Larsen, Bjerregaard 2004; Schanchter, Stalker and Teram 1999 ) Gender differences in care seeking decisions for a subset diagnostic category of CPP, IBS were reported in a population based study that f ound that men with pelvic pain were more likely to seek care when they have fear of being disa bled and if abdominal cramping is present. (Black, Kim, Andrews, Mangel, Buda, Cook in 2006) Wo men with IBS were motivated to seek health care when they had fear the symptoms were related to a serious illness and when frequency of bowel movements was decreased. Neither male nor female care seeking for IBS was explained by pain severity or mental health status in their population based study. Gender differences as well as sexism can influence the effectiveness an d the interpretation of clinical communication between women and health care practitioners. (Castillo 1997; Lieberman, Stoller and Burg 1997; Grace 1995; Van Dulmen 1999; West 1984) and were previously discussed in the section on clinical encounters. Marriage Marital relationships are often affected by CPP due to the sexual lim itations and interpersonal stress caused by long term pain, extensive medical care and in some cases limitations on the ability to conceive children. Ma rtial status and martial relationship dynamics

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40 have reported associations with clinical characteristics of CPP a nd with risk for specific types of pelvic pain. Vulvadynia was reported to occur more commonly among married and more highly educated women. (Arnold et al 2006) Married wome n are, however, at a statistically significant decrease in risk for cyclic or menstrual related pelvic pain. (Latthe et al 2006) Lucht, Schaub, Meyery, Hapke et al (2003) found risk for de pression, a common co-morbidity of CPP, was increased for married women with children. In a study focused on predictors of pain severity in women with pelvic pain, Milburn and Reiter (1993) found spouse responses to CPP that were categorized as solicitous or punishing were associated with more severe levels of pain; spousal responses that were more supportive and non-blaming were associated with lower levels of pain. Marital status changes (divorce, sepa ration) and other marita l difficulties were not statistically significant predicto rs of higher pain levels among the women with CPP in the Milburn and Reiter study. (1993) Similar relationships betwee n spousal responses and the development of post-partum depression are reported (Huang and Nigel 2002; Romito, SaurelCuizolles, Lellong 1999), highlighting the significance of relationship interactions in two distinct womens health conditions. Disturbed relationships with husband or spouse are the most consistent predictor of PPD across cultures in current studies (Huang and Nigel 2002; Romito, Saurel-Cuizolles, Lellong 1999; Simons, Reynolds, Morison 2001). Golding (1996) studied reproductive and sexual symptoms, and found that women exposed to multiple, nonviolent incidents of unwanted intercours e with a spouse were more likely to develop sexual symptoms than women exposed to other types of assaults. Sexual symptoms were also more likely if the women experienced an assault accomplished by pers uasion rather than physical threat or if a woman was exposed to multiple episodes of assault.

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41 Sexuality and Sexual Function Sexual functioning, attitudes towards sexual ac tivity and a wom ans perception of herself as a sexual being can all be affected by C PP. (Collett 1998; Curtis 2007; Randolph and Reddy 1996;Theve-Gibbons 2000;Weijenborg 2002) Pain during sexual intercourse (dyspareunia), pain after intercourse lasting hours or days (post-coital pain), di sinterest in sexual activity (sexual indifference or sexual hypoactive disorder), and diminished physical sexual response (reduced libido) are all associated with CPP. Up to 41% of women with pelvic pain report pain with intercourse (Curtis 2007; Randolph and Reddy 2006; Zondervan; Veri, Verit and Yeni 2006). Collett (1998) compared complaints of dyspareunia in women with and without CPP, finding women with CPP were much more likely to ex perience pain with intercourse. Randolph and Reddy (2006) found rates of female sexual dysfunc tion (FSD) of nearly 68% among women with CPP and at 31% among controls without CPP. Nearly 75% of the women with FSD and CPP had a sexual pain disorders; othe r disorders reported included fe male hypoactive sexual disorder, arousal disorder and orgasmic disorder. (Ra ndolph and Reddy 1996) Overall quality of life can be negatively impacted by the discomforts and re strictions on sexual activity associated with CPP. (Nickel et al 2007; Theve-Gibbons 2000;Weijenborg 2002) In a study of women in the military and dysmenorrhea, women with menstrual pain were more likely to be dissatisfied with their sex lives and have significan tly lower scores in all eight domains of the Short-Form Health Survey (SF-36) for women. (Barnard et al 2003) There is a large body of literature on se xual symptoms and sexual functioning in menopausal women cross-culturally (Addis et al 2006; Avis et al2005; Beyene 1989; Leidy Seivert 2006; Lock 1992; 1998; 2002) Sexual dysf unction was found less likely among African American than non-Hispanic White women and Asian women in 2006 population based study from Kaiser-Permante (Addis et al 2006). Se xual dysfunction was more likely for women with

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42 higher educational levels, women who reporte d poorer overall health, women with urinary incontinence and women in signi ficant relationships. Women in significant relationships were more likely to participate in regular sexual activ ity than women not in relationships and they found that African American women were more likely to be satisfied with the sexual relationships; their study incl uded 2109 women of whom 47.6 % were White, 18.2 % were African American 16.4% were Asian, 16.6% were Hispanic and 1.3% were Native American/other. Lower body mass index (BMI) and as well as better mental health scores were also associated with increased sexual satisfaction in the Addis (2006) study. Avis and colleagues (2005) reported on a cohort of 3,167 non-Hispanic white, African American, Hispanic, Chinese, and Japanese women from the Study of Womens Health across the Nation (SWAN) who were not using hormones. After contro lling for a variety of variable s, ethnic differences were significant for sexual arousal (P < 0.0001), pain (P = 0.03), desire (P < 0.0001), and frequency of sexual intercourse (P = 0.0003). African American women reporte d higher frequency of sexual intercourse than white women; Hispanic wome n reported lower physical pleasure and arousal. Chinese women reported more pain and less desire and arousal than the white women, as did the Japanese women, although the only signifi cant difference was for arousal. Women with CPP are more likely to have a history of sexually transmitted diseases (STDs) than other women. (Latthe et al 2006) Pa in from most of the common STDs is for the most part acute and short lived if proper treatment ensues. History of an STD, particularly recurrent or untreated STDs may be a precursor to CPP due to the role of STDs in the development of pelvic inflammatory disease (PID), a statistically significant correlate of all types of CPP (Latthe et al 2006) Testing for STDs is usually a routine component of the medical diagnostic process for pelvic pain (Carter and Howard et al 2000); however, biomedical texts on

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43 the topic of CPP give little attention to the topi c of STDs except as an etiological factor for pelvic inflammatory disease. (Howard, Perry, Carter and Minawi 2000; Steege, Metzger and Levy 1998) STDs are most common in women unde r twenty-five years of age whereas CPP is most common among women approximately 10 year s older on average. (Howard 2000) Multiple sexual partners, particularly in the last 30 days and not using condoms or other barriers predispose women to both STDs and PID. (Car ter and Howard 2000; Ness, Randall, Richter, Pieper, Montagno, Soper, Sweet, Nelson, Shubeck, Hendrix, Bass, Kip 2004) Champion et al (2005) report on a sample of Mexican American and African American adolescents seeking treatment for sexually transmitted diseases (STD ) in which they found links between STDs, abuse history and later development of pelvic inflammatory disease (PID). The mechanism suggested for the link between PID and pelvic pain is biologic, w ith the long term effects of PID damaging the reproductive system. Although increased health care utilization is characteristic of abused women, Champion et al (2005) reportedly delayed care seeking behavior among the abused minorities with STDs and PID in their study. A degree of normalizing of pelvic pain by the long term exposure to pelvic pain and sy mptoms of STDs and PID apparently occurred among the young women in their study who delaye d care seeking well past the appearance of clinical levels of symptoms. (C hampion et al 2005) Delayed care seeking increases the likelihood STDs will progress to PID and on to the next step, CPP. Many women with CPP resist and resent (Theve-Gibbons 2000) the emphasis on screening for STDs as a component of biomedical care for CPP. (Theve-Gibbons 20 00) The social stigma attached to STDs (Inhorn 1986; Grant 2005) and the implication of promiscuous behavior is embarrassing and humiliating to many women. So me women report damage to their intimate relationships due to the suspicion aroused by the medical suggestion of STDs and others report

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44 ongoing stigma even after they ar e diagnostically cleare d as their friends, family and partners continue to believe that there mu st be a hidden aberrant sexual behavior that is causing their pain, especially if no other clear di agnosis emerges. (Theve-Gibbons 2000) Abuse and Assault Prevalence of sexual and physic al abuse am ong women in ge neral is between 15% and 30%, higher for chronic pain populations (Toome y, Seville, Mann, Abashian,Grant 1995) and up to 50% among women with CPP. (Walker and Stenchever 1993) Women and girls are much more likely to experience violence and abuse of all types throughout the lifespan than are their male counterparts with 20-30% of girls and 15% of boys estimated to be sexually abused before age 18 in the US and Canada (Schachter, Stalker and Teram 1999) Women with CPP are significantly more likely to ha ve experienced physical and sexual abuse than other women. (Drossman, Leserman, Nachman et al 1990; Ha rrop-Griffiths, Katon, Walker, Holm, Russo, Hickok 1988; Latthe et al 2006; Rapkin, Kames, Darke et al 1990; Reiter and Gambone 1990; Toomey, Hernandez, Gittelman 1994; Verit, Verit and Yeni 2006; Walker, Katon, HarropGriffiths et al 1988; Walker and Stenchaven1993, Walker et al 1993; Walling, OHara, Reiter et al 1994) Jacob and DeNardis ( 1998) reviewed studies on the co -morbidity of childhood abuse and pelvic pain and reported prevalence range s between 48% and 56% among women with CPP. Their review of clinical studies and retrospective surveys of adults put prevalence of child abuse (sexual and physical combined) between 16-27% of girls of 15% of boys (Jacob and DeNardis in Steege 1998). Others estimate the range of o ccurrence at much higher rates 20-50% (Bachmann Moeller, Bennett 1988) Sexual abuse was one of two factors (PID be ing the second factor) with a significant association with all types of CPP in La tthes statistical examination of the literature on CPP. (2006) That review excluded gastrointe stinal related CPP; how ever, sexual abuse is reported to have a strong associa tion with irritable bowel syndro me and other types of chronic

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45 gastrointestinal disorder in other studies. (Jamieson and Steege 1997; Drossman 1995; Drossman et al 1995) Studies of childhood sexual abuse and CPP in a dult women provide the type of data that could support causality between sexual victim ization and development of CPP due to the temporal relationship of the abuse and the pain onset. Some reports indi cate that childhood abuse alone or childhood and adult abuse combined are mo re strongly correlated with the development of CPP than adult abuse alone. Girls are at grea test risk for sexual abuse between ages 7 and 13 with risk increasing at puberty. The risk at puberty conflicts w ith popular notions that as girls age they are less likely to be sexually abused due to their larger physical size and ability to articulate the events to others. Statistics indicate the sexual tr ansition of puberty is not however, protective from sexual abuse. Girls and boys ar e both more frequently abused by heterosexual men in a position of power and trus t in their lives. For girls, th e perpetrator is more likely someone in the home or family; for boys, it is more likely someone in the community, for example, the revelations in recent years of the long term sexual abuse committed by pedophilic Catholic priests. (Dale and Albert 2007) Mu ch childhood abuse goes unreported, with estimates as low as 20% of cases reported (Bachman, Mo eller and Bennett 1988). Licensed health care workers were mandated reporters of childhood a buse in all US states by the Childhood Abuse Prevention Treatment and Adoption Act Amendments in 1996, however, approaches to screening for abuse vary and many cases ar e overlooked. (Purtillo and Haddad 2002) Frayne, Skinner, Sullivan, Tripp, Hankin, Kressi n and Miller (1999) write that in a sample of military women utilizing the Veterans Administ ration health services 23% reported a history of sexual assault while in the military service. In their national sample of over 3000 women, history of sexual assault was a ssociated with medical and physi cal symptoms in every domain

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46 they assessed including statistically significant associations with lo st pregnancies (46%), irritable bowel syndrome (26%), frequent urinary tract infections (19%), endometriosis (12%), hypertension (32%), heart attack (20%) and obesity (38%). Due to the cross-sectional design of their study, they were not able to assert caus ality between sexual a ssault history and the associated medical problems. Th ey did control for potentially confounding variables (age, race and education) without change in significance in the initial findings. Painful intercourse is often associated with history of sexual and physical trauma. (Golding 1996; Howard 2000b; Latthe et al 2006; Walker and Stenchever 1993) Women who experience increased levels of physical threat during sexual and physical assaults are more likely to experience intercourse pain than women than women with less threatening abus ive experiences. (Golding 1996; Walker and Stenchever 1993) Women subjected to female genital operations experi ence lifelong pain with intercourse, bowel and bladder f unction. (Latthe et al 2006) By intention of the procedure, circumcised women have difficulty participati ng in sexual intercourse and sexual pleasure. Repeated operations are often preformed to allow childbirth a nd intercourse. The risk for infection, PID and HIV/AIDS is inhe rently high among women who endure these procedures.(Latthe et al 2006; Nour 2008; Obermeyer 2003;Schell-Duncan 2003; Yount and Abraham 2007) Other ramifications of childhood physical, verbal and sexual abuse relevant to women with pelvic pain include depression (Handwerker 199 9), drug abuse and addiction, eating disorders, low self-esteem, lower self-control (Toomey, Seville, Mann, Anashian, Grant 1995) sexual disorders, and gender identity disorders. (B achman, Moeller, Bennett 1988; Fry et al 1993; Rosenthal 1993; Schachter, St alker and Teram 1999; Talley et al 1994; Walker and Stenchaven1993) Some have attempted to ex plain CPP as psychogenic and physical expression

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47 of the pain of abuse; others refute abuse as an etiological factor (F ry, Crisp Beard, McGuigan 1993) Depression is considered by others to be a consequence of the suffering and frustration associated with CPP. (Rosenthal 1993; Grace 1995) Psychological distress in women exposed to violence is conceptualized by others as maladapt ive coping that occurs in response to the abuse rather than to the pelvic pain. (Badura, Reiter, Altmaier, Rhomberg, Elas 1997) Similarly, dissociation is interpreted by some as a defensive or adaptive res ponse to abuse; for example, in a study of women with CPP and an abuse histor y as well as samples of women with other medical illness and abuse histories, Spinhoven et al (2006) found physical abuse as the only clear predictor of level of somatoform dissociation in women with C PP. Handwerker (1999) reported higher levels of depression among Al askan natives who were exposed to verbal abuse of a racist nature in childhood. Handwerker (1999) suggests stress induced changes in neurotransmitter biochemistry as a partial explanation for the increased risk for later life depression after childhood trauma, illustrating the bio-cultural na ture of both depression and abuse (Castillo 1997) Body shame and body image disturbance ma y also manifest as a consequence of childhood abuse, for example, body shame was shown to be associated verbal and humiliation in a study of that examined teasing among Afri can American children and adolescents. (YoungHyman et al 2003) Body image has not studied among women with CPP. Physical conditions that are st atistically increased in women with abuse histories include chronic fatigue, bladder disorders, headache, asthma, diabetes, heart problems and reproductive disorders, including CPP. (Golding 1996; Ro man, Belaise, Martin, Morris, Raffi 2002) Goldings (1996) study which identified robust relationships between sexual assault and reproductive and sexual symptoms community group of ethnically diverse women, was discussed earlier in this chapter in the secti on on race and ethnicity. Physical injuries to the

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48 pelvis and/or pelvic infection can result from sexual and physical abuse and lead to immediate or later life pelvic pain. Touch and/or contact sensitivity, is common among victims of abuse and domestic violence, (Johnson 1997; Schachter, St alker and Teram 1999; Valpy 2003; Walker et al 1988) and is often a problem for women with CPP. Touch or contact sensitivity is also common among women with CPP who are not abused, partic ularly those with diagnosis of vulvodynia, vulvar vestibulitis or herpes zoster (Shingles). Emotional and psychological changes resulting from episodes of abuse and physical violence are suggested as a psychogenic explanation for pelvic pain that allows women to avoid sexual or physical contact that reminds them of the trauma. (Gidro-Frank, Gordon and Taylor 1960; Ha rrop-Griffiths, Katon, Walker, Russo, Hickok 1988) Goldings finding that leve l of physical threat is associated with later symptom development indicates a role for the cognitive emotional, and/or psychological in the development of CPP. Women and girls exposed to repeat assaults more are also more likely to develop painful problem than are their counterparts who suffer an isolated incident of violence or abuse. (Golding 1996) The relationship of the perpetra tor to the victim also appears to impact the risk for developing pelvic pain as well as the type of pelvic pain that manifests. (Golding 1996) Self-Efficacy Wom en, as well as adolescent girls (Chen, Li n, Heitkemper and Lu 2006) may rely on selfcare when biomedical treatment is ineffective fo r menstrual and other types of pelvic pain, or, they may utilize self-care rather than seeki ng biomedical care. (Grace and Zondervan 2006; Zadinsky and Boyle 1996) Zadinsky and Boyle ( 1996) described self-care by women with CPP to include 3 fundamental strategies: 1) assessi ng the need for self-care 2) developing self-care practices and 3) sustaining se lf-care practices. (Zadinsky a nd Boyle 1996) Conversely, many women develop the belief that the problem is not r eal and/or that they are somehow at fault and responsible for their symptoms when a viable medical diagnosis does not emerge, rather than

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49 actively engaging in agency to improve their co ndition. (Grace 1995) Class may play a role in decisions to engage in selfcare particularly in the use of complementary and alternative medicine where out of pocket expenses can be significant barrier. (Baer et al2008) Some women with CPP limit their self-care in order to continue with their caretaking roles, particularly when care taking roles serve as the pr imary source of self-identify. (T heve-Gibbons 2000) Biomedical strategies to promote adherence to self-care regimes often build on the caregiver role of women by framing the importance of self-care as the means to regaining the ability to care for others. Health care professionals are known to avoid discussing and/or minimize conditions related to urinary and fecal incontinence as well as othe r socially stigmatized conditions. (Mitteness and Barker 1995; Porrett and Cox 2008) Ageism and se xism contribute to the inattention such conditions receive from health care professionals who often perceive conditions such as pelvic pain and incontinence as normal for women and the elderly, limiting treatment options offered by health care professionals. (Mitteness and Ba rker 1995) Women with pelvic pain often adopt coping strategies that allow them to appear normal which for many involves caring for others rather than self. Such coping strate gies contribute to the invisibility of their condition to family members and co-workers (Grace and Zondervan 2006; Theve-Gibbons 2000) Instrumentality or competency (Parsons 2001; Unger and Crawford 1992) are feminist terms referring to a dimension of personality a nd ability that is stereotypically male which implies the ability to carry out life responsibilities actively, objectiv ely, independent ly, directly and unemotionally. Gender variations in this tra it appear to manifest fo r women and girls during periods of biological or sexual changes. Prior to puberty, instrumentality in girls is at levels similar to boys. (Parsons 2004; Unger and Cr awford 1992) Instrumentality is essentially analogous with competency in a social sense that is instrumentality is associated with a person

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50 who is capable of effectively manipulating the world around them. (Unger and Crawford 1992). Instrumentality is directly in opposition to the affective dimensions of personality and behavior stereotypically associated with fe male gender such as passivity, emotionality, dependence and indirectness, all characteristics thought to produce a less competent approach to interacting in the world. Women may or may not accept stereotypical views of themselves and other womens, and may or may not fit the patte rn. However, studies have long indicated that women who do not accept stereotypically views of their instrumentality are more likely to achieve socially and professionally despite disadvantaged backgrounds (Unger and Crawford 1992). During times of biological transition, women of ten feel out of control as they negotiate the changes in their bodies and the changes in so cial expectations. They may question their own instrumentality during difficult tim es, however, their abil ity to overcome lack of confidence in their ability may be effected by the degree to which they accept or refute stereotypical beliefs about the instrumentality of women. (Klein man 1988a) In a classic study of working class women in England by Brown and Harris (1978) found th at when a relative lack of social power was combined with absence of affective s upport, no job outside the home and parenting pressures in the home, there was a marked decrease in self-esteem and increased vulnerability to clinical depression. Kleinman (1988a) identified a similar pattern of vulnerability and provoking agents among Chinese. Similar patterns may exist among women with CPP, explaining the differentials in susceptibi lity to developing CPP. Women with low beliefs in their own instrume ntality are likely to have difficulty making necessary changes in home or work routines to accommodate time for exercise, relaxation and other aspects prescribed to address CPP. A wome ns belief in her instrumentality can impact her successful implementation of lifestyle changes recommended by health care practitioners.

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51 Women with limited views of their own instrumentality may have difficulty with tasks that require them to negotiate and manage their tim e, actions, interactions and resources. The hormone fluctuations associated with me nses, pregnancy and menopause all may have consequences on emotions and concentration whic h can further lower a womens belief in her instrumentality as these events support the stereotypes. Summary: Chronic Pelvic Pain as a Biocultural Health P roblem Chronic pelvic pain is a severely painfu l and functionally limiting condition that is prevalent among women of all ages from divers e ethnic backgrounds and from varied geographic regions. A multitude of biological, psychological a nd social variables are associated with the condition; the individual affects of these variables is poorly unders tood and their interactions are understood to a lesser degree. Many women routinely experience intermittent, pelvic pain as a normal part of reproductive and sexu al life that does not significan tly interfere with their lives in an ongoing fashion. Despite its prevalence, many wo men apparently perceive pelvic pain as a unique individual problem and rarely share their experiences with other women or in other ways seek out social support. The asso ciation of pelvic pain with re productive and sexual activity may deter some women from seeking either medical care or social support for the condition. Social support is normally a strong point for womens h ealth, however, embarrassment or social taboos on the topics of sex, reproduction, ga strointestinal and urological f unctions may all contribute to a phenomenon of social silence regarding pelvic pain. Community based studies of prevalence indicate that higher numbers of women experience chronic pelvic pain than seek biomedical care for it. The association of pelvic pain with sexual and reproductive functions may also deter women from health seeking care if they percei ve their symptoms as a normal part of womanhood, perhaps contributing to the chronicity of the condition and limiting their access to both health care and social support.

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52 Limited economic resources and exposure to social environments conducive to or characterized by physical threat and sexual assault appe ar to contribute to the development of CPP. (Golding 1994; 1996; Champion et al 2005; Haggerty et al 2005) Ethnically diverse women are affected by the conditi on and correlations between et hnicity and specific types of pelvic pain are reported with African American women appearing to be particularly at risk. (Latthe 2006; Golding 1994; 1996; Champion 2005; Haggerty 2005) Cultural and biocultural approaches to chronic pain (Bates 1996; Good, B odin and Kleinman 1992) and as well as crosscultural studies and feminist cr itiques of biomedical approach es to pregnancy, menopause and menarche (Beyene 1989; Davis Floyd 1994; 2001; 2007; Martin 1992; Meade 1965) inform our understanding of the relevance of social context to chronic pelv ic pain, however, focused study that specifically examines the contribution of ethnicity and other soci al attributes to the experiences of women and men with chronic pelvic pain are needed to support more efficacious medical management of this particular conditi on and to shed light on the reasons some women are more susceptible to this condition than others.

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53 Table 1-1. Biocultural Correlates of Chronic Pelvic Pain in Women Association CyclicDysmenorrhea Dyspareunia Non-Cyclic Positive Sex Abuse Sex Assault Stranger Assault Physical Threat PID Age less than 30 Early Menarche Thin (BMI 20<) Irregular Flow Longer Flow PMS African American Child Sex Abuse Sex Assault Spouse Assault PID Depression Anxiety Peri-Menopause Female Genital Cut Child Sex Abuse Sex Assault PID Depression Anxiety Miscarriage Long Menstrual Flow Endometriosis C-Section Pelvic Adhesions Hysterectomy Somatization Negative Married Fish Intake Physical Exercise High Parity Younger age Pre-menopausal No abuse history

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54 CHAPTER 2 BIOMEDICAL ASSUMPTIONS AND PRACTICES Introduction One aim of this portion of the project is to provide a critique, from the perspectives of culture and gender, of biomedical assumptions about chronic pelvic pain as a foundation for the advancement of a socially informed perspective on pe lvic pain that is also relevant to biomedical practitioners. A summary of bi omedical assumptions related to chronic pelvic pain in women was developed by searching the biomedical litera ture on the topic; revi ewing biomedical text books that specifically address pelvic pain in women; (Howard, Perry, Carter, El-Minawi 2000; Ling 1993; Rosen; San Filippo; Steege, Metzge r and Levy 1998) reviewing proceedings of meetings of the International Pe lvic Pain Society (I PPS Proceedings) and the National Institutes of Health; (NIH 2002); and from drawing on my e xperiences as a physical therapist involved in the clinical treatment of women with CPP, refl ecting on my observations and perceptions as well as discussing the same with colleagues in the field, soliciting their insights and opinions. I also attended several meetings of the IPPS as well as the 2003 NIH meeting on chronic pelvic pain. Anthropological and feminist sc holarship that addresses biomedicine, womens health, sexual and reproductive health, and chronic pain was utilized as the foundation of the critique. Challenges to Biomedical Mode ls of Health and Healthcare Biom edical practitioners are cha llenged and often frustrated in their attempts to alleviate the pain and physical complaints expressed by women with chroni c pelvic pain. The etiology of pelvic pain is commonly accepted in biomedical practice to be multi-factorial and holistic approaches to diagnoses and interventions ar e attempted by many and recommended by leading practitioners who specialize in the management of the condition. (Howard 2000; Ling 1993; Peters, van Dorst, Jellis, van Zuurin, Herm an, Trimbos 1991; Rosenfeld 1996; Steege 1996)

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55 Although biomedical clinicians are well aware of the conditions complex and multifactorial etiology, the biocultural nature of the problem makes it difficult to establish clear cut approaches to intervention within a biom edical framework. (Reiter 1990; Peters et al 1991; Steege 1992; Steege1993; Steege 1991; Ling 1993; Howard 2000a ; Latthe et al 2006) Multiple body systems contribute to the biological causes of CPP a nd psychological co-morbidities are also common. (Rosenthal 1993; Peters 1991; Jacob 1996) A psychiatric diagnosis often accompanies a biological diagnosis. (Rosenthal 1993) The social factors such as sexual and physical assault that occur at higher rates among women with CPP furt her complicate both their lives and the medical management of the condition. (Bachman, Moeller, Bennett 1988; Harrop-Gr iffiths et al 1988; Golding 1996; Romans, Belaise, Martin, Morris, Raffi 2000) Disentangling the interactions between the psychological, social and biological attributes that c ontribute to health, illness and disease can be challenging for researchers and pract itioners in biomedicine who by virtue of their training often approach health car e from a hierarchal, mechanisti c and dualistic point of view that minimizes the relevance of social cont ext. (Engel1977; Davis Floyd; Hahn 1995; Helman 1984; Helman 2007; Kleinman 1978) The foundation of traditional biomedicine is a disease model of health based in science and technology. Mechanistic and hierarchal views of the body as well as Cartes ian dualities of mind and body characterize the approac h. The Cartesian model as it has evolved in capitalistic societies depicts the body as a biological machine that works to produce health in a hierarchal system where body dominates over mind with the body being real center of an individuals health. Feminists criticize the system for sexist paternalistic and patriarc hal approaches to both health and health care that they argue limit and in some cases even harm womens health. (Grace 1995; 1998; 2000; Martin 1992; Rosser 1994) Grace (2003) who describes women with CPP as

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56 the embodiment of the limits of Cartesian approach es to health and illness; she explains the difficulties of effectively diagnosing and trea ting CPP within the dua listic framework of biomedicine by examining the contradictions be tween collaborative and integrative feminist approaches and traditional biomedicine. Biomedic ine is characterized by hierarchal patterns of organization of all aspects of health and health care including information, practitioners, diseases and patients. Social structures dominated by hierarchy are considered masculine while collaborative structures are considered feminine. Hierarchal structure influences in social interactions including discourse patterns as well as information interpretation in science and health care (Rosser 1988; 1994; Mart in 1987; Martin 1992) and appear to influence the clinical encounters of women seeking care for CPP. (Grace 1995; 1998; 2000) The appropriateness of management of personal and intimate experiences like chronic pelvic pain within a medical system (biomedical) that only marginally valu es the subjective femi ninity (Laurence and Weinhouse 1994) is questionable from the feminist perspective. The chronicity of pelvic pain may in many cases actually be cau sed by this incongruent relationshi p is a theory that finds some support in my interpretation of the litera ture on this topic. (Grace 1995; Grace 2007) Ethnocentric bias is also a problem as racial profiling is demonstrated to effect treatment decisions across a variety of biomedical spec ialties creating a double bi nd for minority women seeking healthcare. CPP does not fit within a health care fr amework based on a Cartesian mind-body split; many women who seek biomedical care are being told there is nothing wrong with them when organic pathology is not identified. (Grace 1995) Singular vision by clinical specialists as well as separation of the social and psychological from physical conditions are characteristics of biomedicine emphasized by feminists as well as anthropologists as problematic in womens

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57 health care, (Grace 2000; Martin 1987; Mar tin 1992; Rosser 1988; Rosser 1994) and are particularly limiting in the care of women with a condition as complex as CPP.(Wesselmann 2002)Despite the criticisms of the biomedical system, feminist social scientists have acknowledged the significant benefits of advanc ed technology to women seeking care within biomedicine (Scheper Hughes 1987) The efficacious technological approaches that maximize the biomedical clinicians abilities in physical diagnosis and intervention also contribute to a cultural climate that minimizes a ttention to psychological and so cial attributes. (Davis-Floyd 1994; 1997) Limitations of the biomedical model have long been recognized by social scientists, including medical practi tioners with dual training in anthropology such as Art Kleinman (Kleinman 1980; Kleinman, Eisenberg and G ood 1978) and were outlined by Engel. (Engel 1977; Engel 1980) In his call for a new model in medical practice and recommendation for a biopsychosocial approach to health care, Engle (1977) particul arly noted the limitations of biomedicine to fully explain sickness, an issu e addressed at length by anthropologists. (Hahn 1995; Hahn and Kleinman 1983; Helman 1984; Helman 2007; McElroy and Townsend 1996) Over the three decades since the initial work of Kleinman, Eisenberg and Good (1978) and Engle (1977), bio-psychosocial models, bio-psychosocial-spiritual models have emerged in biomedicine; those models as well as the growth of the field of psychoimmunology, the convergence of complementary medicine and bi omedicine and the recent changes in the World Health Organizations International Classificatio n of Function all mark a paradigm shift in biomedicine to a broader view of health and health care moving beyond its dichotomous, hierarchal Cartesian mind and body and foundations. Although mainstream medicine is moving from a dichotomous mind versus body view to a more holistic concept of health, traditional biomedical attitudes, values and beliefs that were prevalent in past decades (Baer 1987; Brown,

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58 Barrett and Padilla 1998; Hahn 1987; Hahn and Gaines 1987; Harwood 1981; Helman 1984) are noted to continue to influence both practit ioners and patients. (Grace 1998; Grace 2000) Convergence of holistic and integrated perspectiv e into biomedical cult ure to the point that application of these concepts is routine in the daily practice of medicine is a gradual process influenced by many factors, in the United States not the least of which is the consumer model of health care. The majority of women with CPP fi rst seek care from their local primary care or gynecologic physician whose training and continui ng medical education may or may not include exposure to the concepts of integrated care for CPP. Leading biomedical practitioners in gynecol ogy and family practice (Steege 1998; Howard 2000a; Ling 1993; Peters et al 1991 ; Rosenfeld 1996) have critically examined the failure of biomedicine to adequately diagnose and effectively treat pelvic pain in women. In a call for holistic approaches to CPP, Ling challenged gyn ecologic physicians to e xpand their approach to pelvic pain beyond gynevision, referring to me dical treatment focused on reproductive organ etiologies. (Ling 1993) Steege (199 6) and Peters et al (1991) s uggest integrated approaches that involve the simultaneous consideration of bi ological, social and psychological conditions at the initiation of the diagnostic pr ocess. Peters et al (1991) conduc ted a randomized clinical trial that compared clinical outcomes in women with pe lvic pain treated with an integrated approach treatment using a traditional gyneco logic approach. They reported statistically significant results supporting the integrated approach to care wh ich involved assessment by all members of an interdisciplinary team at the outset of the episode of care. The integrated models described by Steege and Peters differs from the traditional mind-body dualist approach of biomedicine in that biologic is not separate from but interactive w ith the biologic, consiste nt with a biocultural approach but different from in tegrated medicine concept th at focus on the inclusion of

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59 complementary and alternative medicine in combination with biomedi cal treatment regimes. (Baer 2008; Davis 2004) Clinical Encounters Biom edical clinical encounters for CPP in women were studied to examine the effectiveness of health care de livery models by Peters et al (1 991) in the Netherlands, Selfe in the UK (1998), and Steege in the US (1993); thos e studies are discussed further in Chapter 2 (Peters 1991 and Steege 1993) and at later point in this sectio n (Selfe et al 1998). Womens perspectives on biomedical c linical encounters for CPP were studied by Grace (1995) in New Zealand. Grace provided an interview based account that revealed most women with CPP were frustrated over their inability to obtain a medi cal explanation for their symptoms. They were also distressed by the apparent l ack of interest demonstrated by pr actitioners in he aring the story of how the pain had developed as was affecting their lives. Lexicology was used to develop a metadiscourse from a sample of 36 women wh o had undergone medical treatment for pelvic pain. The essence of the message from thes e women as provided by Graces work is: They want to KNOW what causes their pain; they want to understand it as it relates to each womans INDIVIDUAL life and idiosyncratic set of symptoms AND they want to KNOW what can be done about it.( Grace 1995) The women in Graces study did not find out what caused their pain during the medical encounters. They did not pe rceive any validation for their symptoms or acknowledgement of the disruption of their live s that was ongoing because of CPP. They reportedly were left depressed, confused and often doubting their own mental stability. Consistent with Graces findings several women in this stu dy expressed frustration about the quality of their clinical encounters for pelvic pain, both the co mmunication style and the diagnostic and physical examinations they receive d. Some discussed medical consultations they

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60 perceived as inadequate and/or inappropriate. One woman shared the following as a complement to the physician she had just seen at the Memphis clinic as a new patient: He was very impressive. He was like youve been to all these doc tors and not one of them have asked you exactly where it hurts fo r you to point it out? Well you know only two of them have seen me without all my clothes on. Another shared the following about her family practice doctor and pelvic pain: He knows about it but I havent seen him about it. He knows about all my problems and he tells me Im a problem person who stays with the doctors. One young woman shared this about being treated for depression her physician: He says as I was (depressed) but I sa id I wasnt. He put me on medicine. A lengthy account of an encounter came from an African American woman in Memphis: He said I cant find anything wrong with you. Pe ople dont usually have pain there. Im like people dont have pain there, my goodness. He says Ill tell you what Ill just do an exam. he made me so mad I wanted to forget him He sent me across the street to get a CAT scan and that didnt show anything. Afte r that he told me that I was too big you know, nothing wrong but I was too fat so I got on the phone and called my doctor and I told him what the doctor told me and he ga ve me an appointment to see him. I was telling the lady about my pain and she said I dont see anything wrong with you. I told everybody where my pain is so she said there isnt anything there. A variety of issues create ba rriers to effective communicati on with women seeking health care in biomedical systems. Gender based differe nces in communication st yles, the personal and sexual nature of many women's health care problem s as well as cultural diversity all complicate communication during health care encounters related to women's health care. Some women in this study commented on the benefits of interac ting with women during th eir clinical encounters for pelvic pain. I do feel much better that you are a fema le than a male. Its a little I dont know, embarrassinghes (the physician) a very nice looking gentleman. At the end of the interview session another woman commented: Im more relaxed now (that Ive had) a chance to talk about it a get it out; it helps to have a woman to talk about it to; helps to get it out

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61 The paternalistic style of clinical communica tion added to the frustration of the women seeking care for CPP in Graces (1995) study wher e in the physicians dealing with women with chronic pelvic pain, particularly males, mini mized time interviewing and focused their dialogue on laboratory and other diagnostic tests, however they women with minimal information about their exam results, diagnosis, treatment plan and/or prognosis. Self-doubt as well as frustration was a reported outcome to such clinical enc ounters for CPP by the New Zealander women in Graces study. (1995) Frustration, self-doubt as well as general dissatisfaction with and poor outcomes to health care are all reported associ ations with gender based communication style conflict (Castillo 1997 ; Lieberman et al 1997; Grace 1995; Van Dulmen 1999) consistent with the findings from Graces work with women with C PP as well as a report from interviews with women in the US. (Theve-Gibbon 2000) Women expect physicians to listen to their description of the experience of illness and disease rather th an to just inquire about signs and symptoms. (West 1984) Women also expect to receive clear and comprehensive answers regarding the cause of their conditions and the treatm ent plan. Studies show that ma le physicians interrupt patients more often than do their female colleagues. Reports indicate that female physicians are interrupted more often by patient s than are males, (West 1984) It appears gender may have primacy over professional status where wome n physicians are concerned (West 1984); for example, women patients provide more information with fewer triggers to female gynecologists than to males. Studies also find that more time is spent in gynecological consultation when the womans partner was present, when the woman disagreed with the physician more often, when the visit was related to pregnancy supervision, and when the gynecologist provided more medical information and asked more psychosocial ques tions. (Van Dulmen 1999) The gender and professional status of the gynecol ogists were not linked to length of visit in the Van Dulmen

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62 (1999) report. Women physicians, across specialties, typically spend more time in conversation with their patients and patients report higher levels of satisf action with their communication during encounters with women physicians. Selfe, Matthews and Stones (1998) studied outcomes to medical care for 121 British women referred to gynecologists by primary care phys icians for pelvic pain. The aim of their study was to identify factors associated with be tter treatment outcomes; treatment outcome was operationalized as changes in the score on pain intensity scales. Se veral sociodemographic factors of both patients and pract itioners, as well as clinical, diagnostic and treatment variables were analyzed. The only factor associated wi th more positive treatment outcomes was the specific physician who did the in itial consultation. Controllin g for physician age, gender and training did not alter the significan ce of the associations between sp ecific practitioners and better outcomes to care; neither did controlling for the type of treatment rendered; high scores on hostility were noted among the women in their study, however, high levels of patient hostility did not alter the relati onship between specific practitioners and better pain outcomes. The recommendation from this work is for increased attention to the more subtle, attitudinal, personality and behavioral factors that influence patients experi ences in care seeking for pelvic pain. (Selfe et al 1998) Epidemiology and Social Factor s: Etiology versus Context In biom edical studies, ethnicity is most often considered from the perspective of epidemiology rather than from the contextu al illness perspective emphasized by medical anthropology. (Hahn 1995; Helman 2007; Klei nman 1978; Kleinman 1998; McElroy and Townsend 1996) Ethnicity or, more likely, race, may be reported in prevalence studies that seek to understand race/ethnicity as a factor predicti ve of or protective from a particular health condition, in this case pelvic pain. The dynamic, responsive nature of culture is generally not

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63 represented in biomedical stud ies that include reference to race, ethnicity and/or culture. (Wardlaw2002) Epidemiology identi fies association, but the explan ations for those associations arise from examination of epidemiological facts from the perspective of social context. Ethnic categories, however, represent much more than the artificial phenotypic expressions associated with popular ideas about racial a nd ethnic differences. Effective heal th care strategies for pelvic pain will include attention to social, cultural as well as biological and psychological variables; close scrutiny of the social context within whic h the known variables interact is need to develop such strategies. Disability Although specific reports on workers com p ensation in the CPP population were not identified in this review, leading clinicians in the field note that it is uncommon for women with CPP to be recommended for workers compensation disability and practitioners describe reluctance to pursue disability for patients with th is condition. (Steege 1998) This is interesting since many women with CPP are employed and report difficulty with attendance and job requirements, often modifying thei r approach to work if not missi ng work because of pelvic pain, however. (Grace and Zondervan 2006; Mathias et al1996) Gender differences exist in workers compensation and disability in the chronic pa in population, with men more likely to be on workers compensation disability than women. (Weir, Browne, Tunks, Gafni, Roberts 1996) Reluctance by medical professiona ls to suggest or support a wome ns inquiry about disability due to limitations associated with CPP is disc ussed very briefly in the biomedical literature (Steege 1998) and was observed anecdotally duri ng this writers clinical encounters. (King 19852007) The reluctance of biomedical and insuranc e personnel to accept reproductive related pain as an adequate reason for workers compensati on and disability has been discussed by several feminist writers. (Doyal 1995; Grace 2007; Martin 2001; Margolis 1984) Practitioners who

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64 hesitate to support disability a pplications for women with CPP reporting their hesitation related to concerns that labeling a woman with CPP as disabled may serve to worsen her condition and support the sick role. (Steege 1998) Currently, there are not reports in th e literature that provide a clear picture of the re lationship of CPP to work stat us including numbers of women with the condition who are assigned temporary or permanent workers compensation and/or disability. Gender differences in mental health related to work status and disability are reported. Unemployment was shown to increase the risk of depression for men but not for women in a German study (Lucht, Schaub, Meyer, Hapke Rumpf, Bartels, von Houwald, Barnow, Freyberger, Dilling, John 2003) Studies on worke rs compensation note increase in health services utilization by women in the disability system are relate d to psychological distress as well as womens perception of their ability to ha ndle the problem. Increases in expenditures for health services are reportedly more likely to occur for men who negative attitudes about the condition in terms of its harmfulness its potential to create loss or threaten their security. (Weir, Browne, Tunks, Garni, Roberts, 1996) The review conducted for this project did not identify any studies specifically examining relationships between disability and/or workers compensation and CPP. According to a report from a community base d study of women in the US, most of the functional limitations reported by women with pe lvic pain were related to home activities. (Mathias 1996) (Arnold 2006; Grace 2006; (Beard; Grace 1995; Rosenthal 1993; Reed, Haefner, Punch, Roth, Gorenflo, Gillispie 2000; Stones et al 2000) Weir et al (1996) note that there is no workers compensation board for the domestic wo rk women carry out in the home. Women in this study reported difficulties carrying out domestic responsibilities; however, for the most part

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65 they expressed strong resolve to continue roles despite interference from pain. Difficulties with sexual activities are one of the primary complaints related to interpersonal relationships at home related by women to medical practitioners. Pain: Womens Descriptions a nd Biomedical Interpretations Wom en use a wide range of terms and phrases to give a verbal account of the pain they experience (Grace 1995; Grace 2007b; Haefner, Khoshnevisan, Bachman, Flowe-Valencia, Green, Reed 2000); the breadth of de scriptors used for pelvic pain is a function of the complex biologic nature of the condition, the social ramifications of th e limitations it causes and of the interpretive frameworks women use to explain the pain as well as those used by clinicians to inquire about pain. (Grace 1995; Grace 2007b; Loeser 2005) Biomedical interpretation of pain is focused on the character and intensity of pain which are in turn interpreted in the diagnostic process to direct attention to spec ific organs or tissues and to a ssist in determining the state of any inflammatory or infectious processes th at might be present. (Boissonnault 2005; Magee 2002) Clinicians often provide a li st of sensory and affective de scriptors from which women can chose to describe their pain, such as the McGill Pain Questionnaire or MPQ (Melzack 1975); studies such as those conducted in the devel opment of the McGill Pain Questionnaire (MPQ) (Melzack 1975) support associatio ns between unique pain charact er descriptors and a specific physical pathology. A short form of the MPQ is included in clinical assessment tool recommended by the International Pelvic Pain Society. Womens sometimes use descriptors to explain th eir pelvic pain that imply the presence of chronic visceral disorders. (Wesselman 1993; 19 97; 2001) Visceral pain is often accompanied by nausea, vomiting as well as fever. (Boissonnaul t 2005) One woman in this study described her pelvic pain as Very extremely painful dysmenorrh ea to the point of vomiting with nausea, fever, every month bad fever-M40

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66 Vague, aching pain is indicative of ligament, joint, and muscle problems. (Melzack 1975) Shooting, stabbing and cramping pain can be associ ated with myofascial trigger points and with nerve impingements. (Melzack 1975) Neurological conditions often have a pins and needles or electric shock or sharp nature to the sensation as well. (Melzack 1975) Pain that crescendos in intensity are often associated with visceral organ pathology or vascular congestion. (Boissonnault 2005) This descriptio n is common with pain from intestinal conditions such colitis and other inflammatory bowel disorders. Crampi ng is usually associated with menstrual pain, irritable bowel syndrome, or other intestinal pa thologies; however, cramping pain that radiates along a nerve distribu tion can also occur with intervertebral disc pat hology. Throbbing, pulsating pain is associated with vasc ular conditions and may be de scribed by women with pelvic varicosities. Boring or drilli ng pain is associated with bone pathology. (Melzack 1975) Pain accompanied by nausea and/or vomiting is a flag for systemic illness or infection; pain that changes with bowel movements indicates involvement of the intestines or rectum. (Boissonnault 2005) Women with pelvic pain from vulvodynia, inters titial cystitis, herpes zoster (shingles), and/or peripheral nerve entrapments all co mplain of burning, tingling, itching and skin sensitivity. In a study that compared pain de scriptions between women with non-vulva pelvic pain, women with headaches and women with vulvar pain, women with non-vulvar pain were found to have lower total MPQ scores (indicating less severe pain intensity) as well as lower scores in all four of the subset indexes (aff ective, sensory, cognitive and miscellaneous)of the MPQ. (Haefner, Khoshnevisan, Bachman, Flow e-Valencia, Green, Reed 2000) Burning pain with urination or intercourse often occurs with CPP which implies infection or pelvic inflammatory disease (PID), but is also common with vulvodynia and vesti bulitis in the absence

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67 of infection. A feeling of pressure or of falling out in the pe lvis is associated with organ prolapse and pelvic floor musc le weakness. Pressure may also be described with bladder infections, interstitial cystitis (I C), and cystitis and with tumors. Pain descriptors used by abused and non-abus ed women with chroni c pain (CP), but not specifically chronic pelvic pain were compared in 1995 finding no differences in pain descriptors between the abused and non-abused groups. (T oomey, Seville, Mann, Abashian, Grant 1995)A study of unilateral chronic pain, (n ot specifically chronic pelvic pa in) that compared right sided and left-side chronic pain indica ted that the contra lateral side of the brain is stimulated by unilateral pain resulting in emo tional and behavioral changes cons istent with the functions of side of the brain stimulated. (G agliese, Schiff, Taylor 1995) Studi es were not identified in this review that examined the relationship between un ilateral pelvic pain an d physiologically induced emotional or behavioral changes. The tissues and organs of the reproductive, ur ogenital, gastrointestinal and musculoskeletal systems associated with CPP share innervations fr om the same spinal nerve roots, principally the thoracic and sacral spinal levels as well as from the same autonomic nerve plexuses, which complicates the clinical interpretation of pain patterns. (Baker 1993,1998; Berkeley 2005; Berkeley 2002; Wessleman 1993; 2001; Wesselman and Lai 1997) The neurophysiologic connections between the key systems involved in CPP hamper medical approaches that narrowly examine one body system from the outset. (Berkely2002; Berkley 2005; Rapkin and Mayer 1993; Wesselmann 1993; Wesselmann and La i1997) The fundamental neurophysiologic mechanisms of pain include the activation of peripheral nocicept ors (receptor ce lls that respond to noxious stimuli) and the transmission of the pain stimulus through the nervous system to the point of stimulus percepti on in the cerebral cortex. (Abraham 2003) A complex pattern of

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68 convergence at the central nervous system (CNS ) coordinates the functions of the pelvic body systems and the transmission of painful stimuli. (Berkley 2002; Berkley2005) Normally, bladder and bowel emptying (micurtation and defecation) i nhibit each other and bot h are inhibited during intercourse. The positive functi ons of central convergence are easy to appreciate in those examples but for women with CPP the viscer al-somatic convergence contributes to and complicates their symptomatology. Mechanisms of referred pain and convergence appear to contribute to the involvement of multiple organs body systems and/or tissues in CPP. (Berkley 2005; Berkley 2002; Wesselmann 1993; 2001; Wesse lmann and Lai1997) Trophic or nutritional changes can occur in somatic areas of referre d pain including changes in blood flow, tissue texture, structure of skin and subcutaneous tissue, and atrophy of muscular tissue. (Wesselman and Lai 1997) The influence of convergence on CPP is even more profound considering recent evidence that the variations in the patterns of pain and tissue change va ry with the menstrual cycle and other alterations in reproductiv e status. (Bradshaw and Berkley 2000) Through the process of neurophysiologic convergence, signals from each separate body system involved in CPP can alter function and pain perception in tissues and structures in the other systems. (Berkley 2002; Berkley 2005; Wesse lman and Lai 1997) The afferent nerve fibers that supply the reproductive, urologic and gastroin testinal organs are very specific to the tissue they innervate, however, the source of pain in the pelvis is difficult to distinguish as the innervation patterns from these afferents is one that overlaps a nd converges prior to cerebral interpretation. Overlapping segmental innervation sets up the potential for referred pain, that is pain perceived in areas without pathology because of painful stimuli traveling to the spinal segmental level that innervates a variety of structures.

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69 The pelvic organs derive their segmental inne rvation largely from the lower thoracic, upper lumbar and sacral nerve root le vels. Referred back pain and thi gh pain are common patterns that emerge with pelvic organ pathology. Afferent or sensory information traveling from pelvic organs converges with afferents fr om other structures such as skin and myofascia at the level of the spinal cord. The resu lt is that very specific neurons and nu clei in the spinal cord respond to stimulation from pelvic organs and from skin and other structures. Studies demonstrate that neurons in the thoracic or lumbar spine respond both to manual contact to the skin and myofascia in that spinal region, but also to stimulation of the organs innervated at those same segmental levels. (Berkley 2002; Berkley 2005; Rapkin and Mayer 1993;) In other words, sensory information from the pelvic organs gets blurred at the level of the CNS; the sensory information is not only blurred or merged with that from ot her organs, but from soma tic tissues that share segmental, peripheral and/or aut onomic innervation as well. This process of central convergence of neurophysiologic information from visceral orga ns and musculoskeltal tissu es is referred to as viscero-visceral-somatic convergence. The shared innervation of visceral and peripheral bodily structures renders traditional dualistic biomedical assumptions regarding the separation of visceral and somatic inadequate to explain common patterns of pelv ic pain. Emerging studies in pain research also challenge the dualistic biom edical assumptions that separate central from peripheral and body from mind, as we ll as the hierarchal perceptions about the controlling role of the CNS. Research indicates th at normal normally non-painful stimuli may activate the cortical pain system suggesting that CPP may result fr om both direct and indirect pain mechanisms. Recent data on the neurological aspects of pelv ic pain challenges has leading gynecologist acknowledging that the primary physio logical alterations cause CPP are more likely neurological than gynecologic or urologic and that a full understa nding of pelvic pain is more likely to arise

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70 from understanding changes in neurologic systems, not in reproductive end organs themselves. (Steege 2008) Loeser (2005) suggests four components of the pain experience, nociception, pain, suffering and pain behavior that must all be understood to sufficien tly describe a pain experience. Grace and MacBride-Stewart (2007) found that when women with CPP were given the opportunity to describe pelvic pain in a narr ative form rather than using a word list from a clinical assessment tool, they most often described the pain in term s of how it restricted their life more often than they used sensory adjectives such as sharp or hot to describe the nature of their pain. In other words, when given the opport unity to freely describe their pain, women with pelvic pain tended to describe their suffering rather than the sensory experience of the pain; Loeser (2005) argues that it is the suffering, not the pain motivat es individuals to seek health care, concept consistent with Kleinmans (1992; 1997) suggestion that pain is an idiom of distress, a way to communicate a variety of so cial meanings and often means of expressing social resistance. Acknowledgment of the role of social distress in ac tivating the neurological mechanisms that lead chronic pain and depression is not yet state of th e art in the biomedical approach to CPP; social and ps ychological processes continue to be fall into the category of unreal problems for by most biomedical inte rpretations, in a variety of settings. (Kleinman 1997; Trnka 2007) Biomedical Diagnostic Correlates Establishing a definitive diagnos is and plan of care for com plain ts of chronic pelvic pain is difficult for biomedical practitioners and some argue does not necessarily support the acquisition of positive outcomes. (Selfe et al1998) Howeve r, by tradition and routine diagnostic process, medical care for women with pelvic pain is characterized in larg e part by diagnostic procedures and a sometimes unending search for a cause and a cure. Fragmented body systems approaches

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71 are the usual approach to diagnosis and biomedi cal treatment for this condition, consistent with biomedical specialty practice. (Apgar 2002; Rose nfeld 1996) Fragmented approaches to care may delay acquisition of adequate care while the condition and its soci al and psychological ramifications worsen as well as add to the mate rial and social consequences of the condition. Although conducting a review of syst ems (ROS) is a standard part of biomedical examination, the detailed attention to screening systems outside ones specialty that is put forward by the International Pelvic Pain Society on its Pelvic Pa in Assessment Form is not necessarily routine in most practice environments. The likely exception w ould be practitioners w ith a very specialized practice niche focused on CPP. The medical car e seeking experience most often described by women with CPP is one of exhausting the treatments from one specialty before being referred to another (Steege 2002) with many women resorting to self-care or perh aps carrying on with no care Most medical diagnoses related to problems with sexual function provide a descriptive label of the symptoms women describe as th e diagnosis rather than usual etiology based diagnosis. Common diagnostic categories related to sexual problems are considered both reproductive (ICD9) and psychiatric disorders. (American Psychiatric Association 1994)The DSMIV (American Psychiatric Association 1994) lists dyspareunia, vaginisimus, hypoactive sexual desire disorder, orgasmic disorder, sexual aversion disorder and female orgasmic disorder in the category sexual dysfunctions. All th ese diagnoses are comm on among women with CPP and all have overlapping biological and psychological explanations .(Castillo 1997) In all these conditions, the diagnostic label e ssentially relays what the wo man states is bothering her. Similarly, the diagnosis dysmenorrhea simply means abnormally painful menses. Biomedical diagnoses such as these that are symptom based rather than etiology based usually emerge when

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72 the condition is ill suite d for reductionist biological explan ations. Fibromyalgia (painful myofascia) is another example of such a conditi on. The medicalization of problems that dont fit well within the biomedical diagnostic framewor k can result in the deve lopment of beneficial treatment strategies, but the path to success is rarely clear, simple, or linear and is usually frustrating for patients and practitioners. Dyspareunia. Women who complain of painful intercourse are diagnosed with dyspareunia which can be caused by a variety of biologic conditions of the vagina, external genitalia, reproductive organs, urol ogic systems as well as by mu sculoskeletal problems of the back, hips and pelvis. Vaginismus, a common cause of dyspareunia, is thought to affect 1% of all women. (Howard, Perry, Carter, El-Minawi 2000) Vulvodynia can also interfere with intercourse; it is a condition characterized by severe pain in the external genitalia, aggravated even by the light touch of clot hing and often rendering sexual activity out of the question for many women because of the severe pain associat ed with genital contact. Dyspareunia can be related to particular intercourse positions, situ ations, and partners or to the timing during the menstrual cycle when intercourse occurs. Symptom investigation questioning includes determining if dyspareunia is d eep or superficial; deep dysp areunia refers to pain during deep vaginal penetration; entran ce dyspareunia is pain with in itial penetration. (Howard, 2000 b; Steege and Ling 1993; Webster 1993) Dyspareunia is more common in perimenopaus al women than women in other age groups and is usually attributed to the biological chan ges of menopause by biomed ical practitioners who have traditionally considered menopause a diseas e representing the failure of ovarian function, a perspective criticized by anthropologists and feminists (Inhorn 2006; Lock 1998; 2002; Martin 1992; Rosser 1994) Many physicians routinely pr escribe hormonal medications and/or anti-

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73 depressants for the symptoms associated with menopause, including dyspareunia. Contrary to the common biomedical viewpoint, perimenopausal dyspare unia is more often associated with social factors than the physical change s of menopause (Avis et al 20 05) Sexual activity, attitudes, function and dysfunction among perimenopausal a nd menopausal women are influenced more by ethnicity, relationship factors, abuse history (Golding 1996; Walker and Stenchever 1993), however, biomedical approaches emphasi ze biological explan ations. (King 2006) Sexual desire disorders. Hypoactive Sexual Desire Disorder refers to the absence of desire for sexual activity accompanied by emotional distress. Women who are not distressed by the lack of sexual desire do not technically fit into this diagnosis. Medical explanations for hypoactive sexual desire vary; it is considered common consequence of hysterectomy due to hormonal changes. Loss of libido also occurs among women with CPP w ithout a surgical cause. Some women are disturbed by dimi nished libido, others are not. Many women with CPP express attitudes of sexual indifference with the trait re ported significantly more frequent among Latina women in Goldings study of sexual assault hi story painful sexual and reproductive problems. (Golding 1996) they may be seeking care for pain relief without concer n about restoration of sexual desire. Ethnocentric and sexist assump tions can affect biomedical practitioners diagnostic and treatment for CPP. A young wo man in Theve-Gibbons (2000) interviews described her frustration with physicians who believed the interc ourse pain she experienced was because she was afraid of sex, despite her insistence that she was not afraid and wanted to participate in sex with her husband. Hypoactiv e sexual desire is medi cally explained by both biological and psychological fact ors; limited lubrication, difficulty relaxing pelvic muscles. Sexual Aversion Disorder is similar, but character ized by active avoidance of genital contact; the aversion is to the genitalia of partners more than to sexual activity. A nxiety reactions usually

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74 accompany this disorder considered to be most frequently caused by sexual trauma such as childhood sexual abuse; sexual activity is of ten accomplished by the using psychoactive substances to alter consciousness. Female Sexual Arousal Disorder (FSAD) refers to a womans inability to maintain sexual arousal during coitu s; without sexual pleasure, women often lose interest in sexual activity. Bi ological problems associated with arousal disorders include limited blood flow to the genitalia and reproduc tive organs. Lower body mass index (BMI) was associated with increased sexual satisfaction in a study of middle aged and older women (Addis et al 2006) study. Body Systems and Biological Correlates Biological correlates of CPP are organized by body system during the review of systems (ROS) component of the medical di agnostic process. Biomedical clin ical specialty areas are also organized by body systems (for example: repr oductive system-obstetrics and gynecology or womens health physical therapy; as well as by lifespan patient popul ation (pediatrics and geriatrics in medicine and physic al therapy) and clinical settin g or condition specific (sports medicine; sports physical therapy; oncology). (A merican Board of Physical Therapy Specialties; Boissonnault 2005) During the screening comp onent of patient examination, body systems checklists are utilized to determin e if further examination by a specialist in a particular specialty area and/or specific diagnostic screening tests are warranted. (Boissonnault 2005) Relevant body systems to biomedical examination of women with CPP are the reproductive system associated with obstetrics and gynecology, ur ogenital system, associated w ith urology and uro-gynecology, gastrointestinal system, associated with ga stroenterology, and the musculoskeletal system associated with orthopaedic and/or womens health physical therapists.

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75 Reproductive System A variety of reproductive system diagnos es are associated with CPP including endometriosis, leiomyomas, dysmenorrhea, dyspare unia, pelvic inflammatory disease (PID), uterine fibroids, pelvic adhesions uterine prolapse, ovarian cysts and pelvic varicosities/ pelvic congestion, vulvadynia, and pelvic floor relaxation, among others. Although diagnostic laparoscopy is commonly used in gynecology to i nvestigate pelvic pain, results of procedure often do not reveal the discovery of any organi c pathology. Pelvic pain is the reason for up to 40% of all laparoscopic procedures in gynecology and for at least 12% of all hysterectomies. Many of the laparoscopic procedures and vagina l hysterectomies are aimed at pelvic pain address adhesions and scarring from previous su rgeries. (Howard et al 2000; Steege and Stout 1991) Howard (1993) reviewed th e literature on diagnostic laparosc opy and CPP to evaluate rate at which organic (biologic) pathology was identi fied via this gynecology procedure; the reported rates varied between 28% fo r all age groups and 78% for adolescents who underwent laparoscopy for pelvic pain. Howard warned ag ainst reliance on laparo scopy as a first line diagnostic procedure for CPP. (Howard 1993) In eleven research repor ts covering 3,084 women with CPP who underwent diagnosti c laparoscopy, 34% of the ca ses presented with a normal pelvis. (King et al 1991) At leas t one third of women treated fo r CPP are estimated to remain symptomatic despite the traditional interventions from gynecology, including hysterectomy. (Howard 2000a; Stovall, Ling and Crawford 1990) Pelvic Inflammatory Disease (PID), which ha s the strongest positive association with CPP of all biological conditions (Latth e et al 2006), refers to a spectrum of inflammatory disorders of the female genital tract including endometritis, salpin gitis, abscess of the ova ries and peritonitis. In their 2006 review of CPP studies, Latthe et al (2006) found PID signifi cantly associated with all three types of pelvic pain, cyclic (menstrual cycle), dyspareunia (sexua l intercourse pain) and

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76 non-cyclic. PID risk is increased in women with sexually transmitted diseases (STDs) and to a lesser degree in younger women during the post-part um year. (Mahon et al 2005) It is not known if the slight increased risk in younger women af ter childbirth might also be associated with STDs. As discussed in Chapter 1, minority women are at increased risk for STDs, PID as well as HIV/AIDS, subsequently incr easing their risk for developi ng CPP. (Champion et al 2005; Golding 1996) Excessive, irregular and/ or prolonged menstrual bleeding commonly occurs with CPP. (Bergant and Wicschwendter 1998 ; El-Minawi and Howard 2000; Smith 1993) Dysmenorrhea is the medical diagnostic category for abnormally painful menstruation; pain is a normal part of menstruation for most women. Chronic dysmeno rrhea (abnormal menstrual pain) with duration of 6 months or more is considered CPP as long as the additional diagnostic critieria of causing functional disability and requiring medical or su rgical treatment are met. (Barnard, Frayne, Skinner, Sullivan 2003) Cyclic or menstrual pa in is a well known common subset of chronic pelvic pain. (Latthe et al 2006; Smith 1993) The intensity of pelv ic pain, whatever its location, often varies with a womans menstrual cycle, us ually worsening during the premenstrual (luteal) phase of the cycle and/or during menses. (ElMinawi and Howard 2000; Smith 1993) During the luteal (the days immediately preceding onset of menstrual bleeding) and menses (menstrual bleeding) phases of the menstrual cycle, horm onal changes occur that are similar to levels acquired during pregnancy; these changes are known to facilitate an increased laxity in ligaments and other musculoskeletal structur es.(Eaves, Key, Rai and Shepherd 2006) Such laxity is hypothesized to increase risk for joint injury and infl ammation and to exacerbate pre-existing musculoskeletal disorders and/or impairments (B ertram and Thompson 2005; Romani et al 2003) The hormonal influence on musculoskeletal structure could explain the cyclic nature to CPP that

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77 responds to musculoskeletal treatment rather th an gynecologic (Baker 1993). The ovarian cycle also influences bladder function with recent re search revealing cycling changes in bladder reflexes in response to the ovarian cycle.(J ohnson and Berkley 2002) Intensity of pain associated with ureter stones has also been shown to increase with ovarian cycle changes (Giamberardion, deLaurentis, Affaifati, Ierla, Lapenna, Vecchiet 2001) and kidney stones, which refer pain into the upper and lo wer abdominal quadrants in conj unction with flank (lateral low back) pain, are considered in di fferential diagnosis for both epis odic and non-cyclic pelvic pain. (Howard et al 2000) Endometriosis, considered the most common gynecologic cause of pelv ic pain, occurs in 0-25% of infertile women. Uterine pathology associated with CPP include s leiomyomas (benign tumors of smooth musclealso known as fibroi ds, fibromyoma or myoma), abnormal uterine bleeding, uterine prolapse and uterine fibroids, among other less co mmonly occurring conditions. Cancers of the reproductive, urologic and gastro intestinal organs are also considered in differential diagnosis. (Howard et al 2000)Vaginal conditions in clude vaginal prolapse and vaginisimus (vaginal tension and constriction). Ovarian cysts, ova rian remnant syndrome, as well as varicosities of ovarian blood vessels (P elvic Congestion Syndrome) are all common among women with CPP. (Howard et al 2000; Ling 1993; Steege 1998) As previously mentioned, laparoscopy is commonly used for both diagnosis and surgical interv ention for reproductive organ conditions associated with CPP and many women undergo hyste rectomy, partial or complete, to relieve symptoms of CPP. Results to both these surgeries are often unfavorable. (Howard 1993; Reiter 1998; Reite r and Gambone 1991; Stovall, Ling and Crawford 1990) CPP may occur during pregnancy; however, it is most frequently reported outside of pregnancy. Previous miscarriage and Caesarean-sect ion are statistically significant risk factors

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78 for non-cyclic pelvic pain (Latth e et al 2006), however, there app ears to be no increased risk for pelvic pain related to number of pregnancies (gra vidity), number of births (parity), or number of elective abortions. (Reiter and Ga mbone 1990) Pregnancy related pe lvic pain is often due to changes in pelvic musculoskeletal systems associ ated with pregnancy such as sacroiliac and pubic symphisis laxities and osteiti s pubis, which may continue in to the post-partum period if adequate care does not occur during pregnanc y.(Boissonnault 2002; Os tgaard, Zetherstrom, Roos-Hansson and Svanberg 1994) Some musculos keletal pelvic pain in pregnancy may be exacerbated by the physical strain of labor and deliv ery; some pregnancy related pelvic pain may not begin until labor and delivery.(Boissonnault 2 002; Ostgaard et al 1994; Sturesson, Uden, and Uden 1997) Coccydynia, coccyx fracture, pelvic fl oor muscle tears, pelvic separation, pudendal nerve injuries are among several conditions that may have their etiology in labor injuries.(Boissonnault 2002) In addition to the physical injuries that can occur during labor and delivery, quality of and access to health care ha s the potential to impact pregnancy outcomes. Pelvic pain associated with pregnancy is more likely to be acute rather than chronic due to its association with the short term anatomic and physiologic ch anges of pregnancy. Acute onset severe pelvic pain in pregnancy may be associ ated with ectopic pregnancy, dangerous condition that requires immediate medical in tervention or mortality of the mother may result. Risk for PID (PID is a risk factor for CPP), after pregnanc y has only recently been examined (Mahon et al 2005) and appears to be increased in the immedi ate post-partum period, with that risk further increased with young maternal age. Young mate rnal age and PID are both more common among minority women, would appear to increase the risk for CPP among young mothers form ethnic minority groups.

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79 Urogenital System A variety of urologic and urogenital conditi ons are associated with CPP including interstitial cystitis, cystitis, urethral syndrom e, urethral dive rticulum, vulvadynia, vestibulitis, urinary incontinence, chronic urinary tract infecti ons (UTI), cystitis, and cystocele (prolapse of the bladder). (Summitt 1993; Summitt and Li ng 1990; Howard, Perry, Carter, El-Minawi 2000) Stress or urge urinary incontinence and/or urin ary frequency are often co-morbidities with IC and other urologic diagnoses. Vulvodynia and vulv ar vestibulitis are painful conditions of the external genitalia and vaginal introitus th at are managed by both gynecologic and urologic practitioners, and by medical speci alists who combine the two fields, urogynecologists. Women with vulvodynia have difficulty wearing tight clot hing and some are unable to wear slacks at all without unbearable discomfort due to contact sensitivity. Vaginal dryness, genital itching, swelling and redness are also re ported. (Walker and Stenchever 1993) Touch and/or contact sensitivity, which is common among victims of abuse and domestic violence, (Johnson 1997; Schachter, Stalker and Teram 1999; Valpy 2003; Wa lker et al 1988) is often a complaint of women with CPP. Touch or contact sensitiv ity is also common among women with CPP who are not abused, particularly thos e with diagnosis of vulvadynia, vulvar vestibulitis or herpes zoster (Shingles). Pain with tampon use, gynecologic exams and inte rcourse is common in women with vulvadynia, vulvar vestibulitis and vaginisimus. (Arnold et al 2006; Wesselman 2002) Epidemiologic data on the co-occurrence of urin ary and/or fecal incontinence with pelvic pain was not uncovered in the review conducted for this study, however, Addis et al (2006) reported daily or weekly urinary incontinence wa s associated with grea ter sexual dysfunction in their study sample although they chose not to pres ent the incontinence data in that report. Neurogenic triggers from pathology in other body systems, musc uloskeletal, gynecological and

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80 gastrointestinal being the most notable, are known to lead to changes in bladder function and bladder pain. (Berkley 2005; Weiss 2001) Treatm ents in other anatomic areas such as the musculature of the pelvic floor are known to decrease central nervous system sensitivity associated with urological pain and to alleviate pain from dysf unctional muscles and the bladder. (Weiss 2001) Gastrointestinal System Gastrointestinal (GI) comm on a mong women with CPP in clude abdominal bloating, diarrhea, constipation. (Carter 2000; Rapkin and Mayer 1993) Bowel disorders, particularly inflammatory bowel conditions can refer pain an d alter function in the bladder and reproductive organs (Berkley 2005) as well as cause abdominal pain and pain associated with bowel function. The GI diagnosis most commonly associated wi th CPP is Irritable Bowel Disease (Irritable Bowel Syndrome), although constipation, fecal inc ontinence, intestinal adhesions, inflammatory bowel disease (including Crohns disease and ul cerative colitis), chro nic intermittent bowel obstruction, colitis, rectal prolap se and hemorrhoids may also contribute to the CPP symptoms. (Howard, Perry, Carter and El-Minawi 2000) IBS is thought to arise from functional impairments of the colon that cause abdominal pain, diarrhea, bloating, food intolerance and less frequently, constipation. IBS is associated with sexual abuse, de pression and anxiety as is CPP in general. (Drossman 1995; Drossman et al 1990; Fisher 2002) IBS is more strongly associated with childhood than adulthood abuse and is more likely to occur in abused females than in abused males. (Talley et al 1998) In fact in the Talley study the relationship between childhood abuse and IBS disappeared when age, gender and psychological co-morbidity were controlled. Higher levels of neuroticism as well as scales of psychological morbidity were associated with IBS as was female gender and age of abuse in their study. The operational model they utilized

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81 proposed that IBS was an expression of neur oticism and that childhood abuse was a cofactor leading to that expression. (Talley et al 1998) Musculoskeletal System Musculoskeletal diagnoses associated with CPP include abdom inal and pelvic hernias, (Carter 2000b) myofascial tri gger points (Baker 1993; King et al 1991; Slocomb 1984; Weiss 2001), pelvic floor muscle tension (Sinaki, Merritt and Stillwell 1977; Lukban, Whitmore, Kellog-Spadt, Bologna, Lesher, Fletcher 2001; King Baker 1993), pelvic floor muscle wasting, pelvic floor muscle strain (H unter and Zihlman 1970), peripheral nerve entrapments(Howard, Perry, Carter, El-Minawi 2000; Steege 1998), sacr oiliac dysfunction, levato r ani syndrome and coccydynia among others (Baker 1993; 1998). Stiffne ss in the hips or pelvis or accompanying low back pain may be described by women with musculoskeletal factors contributing to CPP. (Baker 1993; 1998) A typical pattern of faulty postu re associated with CPP labeled typical pelvic pain posture (TPPP) was identified by physical ther apists including this writ er using the work of Kendall and McCreary (1983) as a standard for postural examin ation. Interventions directed toward correction of muscle and joint impairme nts in the hips, pelvis, abdomen and low back associated with TPPP were successful in the clin ical management of CPP in our studies and in others that followed. (King, Ling, Rosenthal, Br yant 1986; King et al 1991; Schroder, Sanfilippo and Hertweek 2000; Fisher 2007; Lu kban et al 2001) The primary musculoskeletal impairments associated with TPPP, included shortened length of the hip flexor muscle groups (Appendix a), weakness of the abdominal muscles (Appendix a) reduc ed mobility (stiffness) in the hips joints in a capsular pattern (Appendix a) and limited flexibility in active lumbar mobility Functional problems associated with the posture included diminished standing balance and an upper chest or restricted breathing pattern as well as difficulties with household, occupational and sexual activities the women associated with CPP. Th e work of Kendall and McCreary (1983) was

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82 utilized to correlate musculoskeletal impairment s and faulty postural patterns. We utilized the human adaptability approach (Moran 1984) to explain the development of TPPP and the associated musculoskeletal impairments as responses to cultural ly dictated postural constraints (the increased time sitting and predominantly sedentary lifestyles) in te chnology based societies such as in the current day US. (King 1985; Myers, King, Rosenthal, Rosenthal 1990) Our retrospective report on 132 women with CPP referred for physical therapy from a university based gynecology include d the initial 75 women referred in the first one year period that physical therapy consultation was added to the gynecologic pelvic pa in clinic. The initial group of women had unexplained CPP that was un responsive to a combin ation of gynecologic and psychological treatment. The additional 57 wo men were referred over a one year period 2 years later. A typical pattern of posture was identified in the initial group, occu rring in 75% of all the women referred to physical therapy that year and in 90% of those successfully treated by physical therapy. TPPP was identified at a si milar rate in the second group of women by different physical therapists fr om those involved in the initial studies with similar outcomes to care. (King et al 1991) Overall in both groups, 70% of the women treated for musculoskeletal impairments had successful outcomes to care for CPP. The Fishers Exact test was utilized to examine the symptomatic improvement seen in th e Typical and Atypica l groups. The results were significant to p<0.0058. TPPP was characterized in the saggittal or side view by an increase to the normal lumbar lordotic curve, and in crease in the normal anterior tilt of the pelvis as well as habitual unilateral standing habits. Ot her more discreet alterations in optimal posture as described by Kendall and McCreary (1983) were also noted. In an unpublished review of records, difference was noted in th e saggittal view of the thoracic spinal curve with an increase in the normal kyphotic curve occurring more fre quently in white women and a decreased or

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83 flattened appearance to thoracic spinal curve among African American women. Follow up to further evaluate ethnic differences in physical characteristics of wome n with CPP were not conducted with that sample of women. The results our first year experience with physical therapy and musculoskeletal management of CPP were reported at the 1986 mee ting of the American College of Obstetrics and Gynecologists (King, Ling, Rosenthal, Bryant 1986) and later published in the International Journal of Psychosomatic Obstetrics and Gynaecology (King et al 1991) To date no studies of musculoskeletal treatment for CPP have sought to confirm the occurrence of the TPPP pattern identified in our early study, a lthough the other studies cited here that examined the results of physical therapy treatment were directed at th e types of musculoskele tal impairments we found associated with that particular faulty postural pattern. In this study, a physical examination form is utilized to screen for the presence of select ed musculoskeletal impairments associated with TPPP considered to be of key importance in th e physical therapy treatment of women with CPP. The impairments included are passive range of motion (PROM) of hip internal and external rotation, abdominal muscle strength, hip flexor muscle length, functional pelvic stability in standing. In addition, two measur es of lumbar posture at the lumbo-sacral angle and thoracolumbar angle are included in the physic al examination component of this study. Successful multi-disciplinary tr eatment of CPP in adolescents that included physical therapy to address musculoskeletal factors wa s reported in 1990. (Gale et al 1990) In 2000 Schroeder, Sanfilippo, and Hertweek reported simila r success utilizing physical therapists to treat adolescents with unexplained pelvic pain that had been unresponsive to gynecologic interventions. In their study approximately 50% of the adolescent girls had a final diagnosis of musculoskeletal pain (31 out of 63). The age range in was nine to 23 with a mean age of fifteen.

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84 Physical therapy also resolved CPP symptoms of musculoskeletal pain in a retrospective study of 52 patients with diagnosis of IC or urinary urgency-fr equency syndrome. (Weiss 2001) Myofascial trigger points in th e pelvic and hip muscles were id entified as the primary pathology in that group that responded to manual therapy techniques with 83% of the patients with urgency-frequency responding favor able to treatment and a 70% favorable outcome in the IC group. (Weiss 2001) The success of pelvic floor physic al therapy in that study was attributed to the arrest of neurogenic triggers in the musculature that led to bladder changes, decreases central nervous system sensitivity as well as direct pain from the dysfunctional muscles. Peripheral nerve entrapments of pelvic and spinal nerves are a nother musculoskeletal source of CPP. Peripheral nerves can be entrappe d by neighboring muscles, ligaments, and joint and by scar tissue and adhesion. Compression on pe ripheral nerves can also be the result of tumors, tight clothing, or occupational positions (Koppel and Thompson 1976) Peripheral nerve entrapments usually result in burning or tingling pain as well as se nsory changes, either hypersensitivity or hyposensitivity in the area su pplied by the nerve. If the nerve has a motor component, weakness in the muscles supplied can occur as well. Nerve entrapments associated with CPP include the ilioinguina l nerve, iliohypogastri c nerve, genitofemoral nerve, femoral nerve, lateral femoral cutaneous nerve obturator and pudendal nerves. Physical therapy can often relieve nerve entrapments related to myofascial tension and faulty posture; surgical release is required in some cases. Pudendal neuralgia has recei ved a lot of attention as an etiology in CPP in recent years with injections and surgeries di rected at that nerve b ecoming more common in the treatment of CPP. (Antolak et al 2002; El-Minawi and Howard 2000) Psychological Diagnostic Correlates Psychological co-m orbidities, particularly depression, anxiety and somatization, are a common part of the biomedical profile of women with CPP (Harrop-Griff iths et al 1988; Latthe

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85 et al 2006; Fry et al 1993; Rosenthal 1993; Sloc umb, Kellner, Rosenfeld and Pathad 1989) as they are in all chronic pain populations. (Bates 1996) The Diagnostic and Statistical Manual of Mental Disorders IV-Text Revision (DSM-IV-TR) is in the bi omedicine for diagnoses of psychological disorders. The DSM IV-TR uses a disease centered model to categorize psychosocial disorders. (Castillo 1997) that also includes a listi ng of sexual dysfunctions; sexual diagnoses common among women with CPP were discussed at the beginning of the section on diagnosis earlier in this chapter. Disease Model of Mental Health Disease centered psych iatry is the paradigm of biomedical treatment of mental health conditions. The disease approach to psychiatry conceptualizes the cause of mental disorders to be brain diseases, primarily chemical imbalances Despite the widespread acceptance of the disease model of mental health in biomedicine, research does not s upport a singular biological explanation for mental health c onditions, and in fact psychiatric medications frequently address symptoms rather than diseases. (Castillo 1997 ; Guttmacher 1994) Cognition which contributes to the development of both the behavioral and biological symptoms of anxiety and depression (Castillo 1997; Handwerker 1999; Schwartz et al 1996) is influenced by cultural context as well as individual perceptions. Cognitive explanations can determine the mental health outcomes to stressful life experiences. Cognitive approaches to the management of psychological conditions are an option in biomedicine, but are far less freq uently utilized than the first line of defense, pharmacological approaches. An understanding of cultural influences on cognitive explanations is necessary for therapeutic approaches aimed at modifying thinki ng patterns to meet with success. Consideration of cultural influences on symp toms of mental disorders is addressed in the DSMIV-TR (American Psychiatric Association 1994), a topi c not included in previous versions of the

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86 manual. Cultural considerations are not, however, in tegrated into the diagnos tic classifications or descriptions of the diagnostic process, but includ ed as reference information for clinicians with interest in culturally diverse clients. Cons idering the lack of integration of cultural considerations, incl uding cultural aspect s of cognition, in the diagnosti c process outlined in the DSMIV, the guidelines in that manual provide biom edical practitioners a diagnostic tool that is quite reliable, but of ques tionable validity.(Castillo 1997) Many women with CPP carry psychological diagnostic labels based on the DS MIV, adding a component to their illness experience that from a culturally informed persp ective may or may not be a valid representation of their mental condition and may or may not resu lt in prescription of more effective therapies. The difficulty in acquiring successful medical care is thought to increase the risk for mental health co-morbidities among women. (G race1995), however, causality between CPP and psychosocial co-morbidities is not considered clear cut in the biomedical literature. (Heim, Ehlert, Hanker, Hellhammer1999; Latthe et al 2 006; Rosenthal 1993) The search for a diagnosis as well as for effective treatment is often fruitless for women with CPP, putting them in a situation characterized by hopele ssness, helplessness, and ange r, traits associated with depression. As their health as well as their social conditions worsen s, many women with the condition become fearful and anxious about the uncerta inty of their health and their future due to the chronicity of the symptoms. (Grace 1995) Latthe et al (2006) evaluated over 60 risk factors in 122 studies on CPP and found strong and consistent associations be tween CPP and coexistent psychol ogical morbidity (presence of a diagnosable psychological condition) history of abuse and as we ll as organic pelvic pathology. (Table 1.1) They concluded that depression and anxiety are both statistic ally significant risk factors for dyspareunia and non-cyclic pelvic pain but not for cyclic pelvic pain. Somatization

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87 (the expression of emotional distress in bodily sy mptoms) was significantly associated with CPP in their review but only pelvic pain in non-cyclic patterns. (Latthe et al 2006) Sexual abuse was significantly associated with al l types of CPP in the Latthe re view. CPP associated with GI conditions was excluded in the Latthe review, however, associations between GI related CPP and sexual abuse are found in other reports. (Drossm an 1995; Drossman et al 1990; Talley 1998) Psychological morbidity appears to play a mediat ing role in the expression of physical and functional symptoms associated with IBS (T alley 1998) and is suggested to mediate the development of sexual dysfunction among women with pelvic pain (Randolph and Reddy 2006). The most common psychological conditions as sociated with CPP are depression and anxiety. Studies indicate the co-occurrence of these conditions with pelvic pain are likely associated with social variables associated with CPP such as abuse or assault history and/or as a consequence of rather than cau se of chronic pain. (Champion et al 2005; Golding 1996) Higher than average correlations of sexual and physic al violence and abuse occur among women with CPP with 30-50% of women with C PP are identified as victims of sexual or physical violence or abuse. (Latthe et al 2006; Walker and Stenchever 1993). From an epidemiological standpoint, currently available data on CPP a nd abuse history is not sufficient to confirm a cause and effect relationship as the timelines of onset for each condition are not clearly delineated available reports, many of which are retrospective. (Golding 1996; Romans et al 2002) The interaction between psychological distress, a buse history and pelvic pain c ontinue to be explored with depression appearing to play an important mediating role betw een pain and function. (Randolph and Reddy 2006) A direct biological causality from abuse to CPP is suggested by Champion et al (2005) in their report on risk of PID in a sample of abused minority adolescents. Others suggest that relationships between abuse and development of chronic pain syndromes may be related to

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88 the emergence of maladaptive coping skills in response to abuse. (Toomey, Seville, Mann, Abashian, Grant 1995) Mood Disorders Mood disorders, as im plied by the name, are characterized by a disturbance in mood, usually either excessive elation or sadness. Mood has consider able impact on an individuals motivation and ability to function. Depressi on is the most common of the mood disorders followed by bipolar disorder in which mood fluctuates betwee n depressed and elated moods (mania). Individuals may experience changes in mood in response to the onset of a shortor long-term physical disability. The reverse may al so occur as mood can be affected by changes in ability to function due to physical impairments. Depression Depressive disorders are well known to be m ore common among women than men. (Cohen 2003; Depression Guideline Panel, Agency for Health Care Policy and Research; Lucht et al 2003; Weir et al 1996) The prevalence of depression is increased in all chronic pain populations and it is more common among women with CPP than other women. (Walker et al 1988; Waller and Shaw 1995) Depression is reported to diminish clinic al responsiveness to medical intervention for CPP (Rosenthal 1993; Steege1993) and is well known to negatively impact function and quality of life in chr onic pain populations. (Carter and Kinback 2000; Rosenthal 1993) Depression is a st atistically significant risk factor for non-cyclic pelvic pain with and dyspareunia as reported by Latthe et al (2006) but was not sign ificant for menstrualrelated CPP. Sexual and physical abuse or assaul t is however significantl y associated with all types of CPP and depression in turn is a known co rrelate of abuse and as sault. (Bachman Moeller Bennett 1988; Schachter, Stalker and Teram 1999) High levels of trai t hostility are found among women with CPP which can be associated with depression as well as history of abuse or assault.

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89 (Fry, Crisp, Beard, McGuigan 1993; Selfe et al 1 998) Negative emotions such as hostility are associated with lower socioeconomic status, soci al stigma and with poorer health. (Castillo 1997; Fry et al 1993; Handwerker 1999; Gallo and Matthews 2003) Changes in reproductive status associated with CPP may cont ribute to the development of depression. (Carter and Kinback 2000; Rosenthal 1993) as grief ove r loss of childbearing status after hysterectomy can encompass women emotionally and psychologically in addition the emotional changes that may accompany the hormonal changes that result from the surgery. Loss of libido is an expected outcome of hysterec tomy that can impact personal relationships negatively and relate to the development of depression post-hysterectomy, complicating the recovery from surgery for CPP. (Rosenthal 1993) Sexual hypoactive diso rder accompanies CPP for many women with or without hysterectomy; loss of libido may strain interpersonal relationships, reducing overall quality of lif e and increasing the risk for depression. Anti-depressants have been a commonly used therapy for women with CPP for many years principally to address co-morbi d depression (Bashford 1998; Walk er, Sullivan and Stenchever 1993). Side effects of anti-depr essants can be problematic for women with sexual problems associated with CPP as arousal; vaginal lubric ation and orgasmic response are all diminished with their use. (Bachman and Phill ips 1996) Constipation is another si de effect of tri-cyclic antidepressants that can add to th e problems women experience with CPP, however, that particular side effect can be helpful to women with irri table bowel symptoms as a part of the condition. (Bachman and Phillips 1996) Anti-depressants appear to be most effectively utilized for CPP as part of an integrated or multi-modal appr oach to care (Bashford 1998; Howard 2000a) Antidepressant therapy for chronic pelvic pain has not however, been studied extensively; the primary benefits of their use to patients found in studies of other types of chronic pain conditions

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90 include improved pain tolerance, restoration of sleep patterns and reduction in depressive symptoms.(Howard 2000a) Some reduction in pain intensity with anti-use of tricyclic antidepressants was reported in a sample of women with CPP and norma l laparscopies, however, the sample size was very small (14 women) (Walker, Sullivan and Stenchever 1993) Recommendations for use of anti-depressant s for CPP are primarily directed towards management of accompanying depression. (Howard 2000a) In this study, responses to selected questions on the IPPS assessment form regard ing treatment for depression and depressive symptoms were utilized to determine if depressi on as biomedically defined was a characteristic of study participants. Anxiety Anxiety dis orders are characterized by future-oriented fear differing from ordinary fear, which is related to the perception of a present or current danger. (Bonder 1995; American Psychiatric Association 1994) Th e future-oriented fear experien ced by individuals with anxiety disorders is described as uncontrollable, ma ladaptive and accompanied by feelings of helplessness. (Badura et al 1997; Bonder 1995) Anxiety, particularly post-traumatic stress disorder (PTSD), is associated with CPP (Hei m, Ehlert, Hanker, Hellhammer 1998) and is also more common among victims of violence and abuse (Herman 1992; Cole and Putnam 1992;; Resnick 1993; Woods and Campbell 1993). Posttrauma tic stress disorder (PTS D) is a behavioral disorder with significant medical implications PTSD increases risk for sudden and fatal cardiac events among men and women and is also known to increase suicide risk. (Bruce 2003) PTSD has characteristics consistent with both anxiety and disso ciative disorders.(Bonder 1995; Castillo 1997) Dissociative disorders are charac terized by a division of co nsciousness or a lack of integration of mental facu lties or functions (Castillo 1997) and are noted to occur among abused women as well as women with CPP. (Badura et al 1997) Dissociative disorders

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91 commonly occur in the form of culture bound illnesses as a respons e to the social stress of oppression and/or stigma. In his description of a holistic paradigm for mental health, Castillo utilizes the exampleof spirit possession as a means of socially acceptable escape for newlywed Indian women to escape an abusive family as an illustration a culture bound di ssociative disorder. In this study, information is collected regard ing behaviors consistent with biomedically defined anxiety disorders on the Pelvic Pain As sessment Form. Individuals with combination of anxiety and depressive disorders usually suffer both more chronically and more severely (Bonder 1995; Gaynes et al 1999), are more at risk for su icide (Bruce et al 2003) and also have overall poorer health as well as poorer outcomes to heal th care. (Bruce 2003) Recovery is less likely from when anxiety disorders have an onset ea rly in life. (Bruce et al 2003) The difference between the manifestations of attributes consistent with either a nxiety or depression seems to be primarily based in an individuals cognitive approach to a problem or traumatic event; that is how the individual explains problem atic conditions and experiences in their lives to themselves may determine the appearance of behaviors consis tent with the medical diagnostic categories of anxiety or depression. Substance Abuse and Addiction Substance abuse is a diagnostic category in the DSMIV. Substa nce abuse am ong women with CPP has been minimally examined although there is some report of correlation between the two. (Rosenthal 1993) The risk for substance ab use is increased among victims of violence and abuse as well as for individuals with chroni c pain or illness, putting women with CPP at increased risk for substance abuse. (Chander and McCaul 2003; Bashford 1996) Substance abuse also increases with incr easing levels of stress and distress (Chander and McCaul 2003; Bashford1998), again implying an increase risk for women with CPP. Wome n with a history of

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92 abuse or who are addicted to alcohol or drugs also commonly have co-morbidities of depression or anxiety; women with CPP are at greater risk for all these c onditions than other women in the population. (Latthe et al 2006) Evidence indicates a role for anxiety, which is a problem for women with CPP, in the development of subs tance abuse and dependen ce. (Castillo 1997) PTSD, in particular, appears to be a factor in alcohol and drug dependence in women with a history of abuse, further incr easing the likelihood of its occurrence among women with CPP due to the increases likelihood they have a history of abuse or a ssault. (Chander and McCaul 2003) Information about substance abuse and addiction history was collected in this study during the interview using the validated questionnaire included on the IPPS assessment form. Fragmentation and Holistic Biomedical Care Biom edical practitioners attempt to manage pelvic pain from a holistic perspective, however, holistic biomedical approa ches are characterized by a dis ease model of health care that limits attention to the illness experience and determines the relevance of known social and psychological correlates of the condition thr ough an ethnocentric lens. Womens experiences within the biomedical system are often characte rized by a lack of answers regarding causality, limited attention to the individua l illness experience and gender ed, paternalistic communication. (Grace 1995; 1998; 2000) Encounters with biom edicine are similar for women with Fibromyalgia and other chronic illnesses a nd disabilities (Burc khardt 1999; Wendell 1996) which are also better suited to socially informed biocultural approaches to health care than to holistic biomedical care. Although there is wealth of biol ogical data related to CPP, it has largely been captured by studies conducted by clinical sp ecialists who design research fr amed around the perspective of their particular specialty area. So reports from gynecology primarily describe reproductive system variables, reports from urology primarily describe urogenital system variables, reports

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93 from gastroenterology primarily describe gastro intestinal system vari ables and reports from physical therapists primarily describe musculos keletal variables. The resultant views of the biological aspects of CPP as we ll as clinical treatments for th e condition are often fragmented along the lines of medical spec ialties. (Apgar 2007; Beard, Reginad, Pearce 1988; Grace 2000; Ling 1993; Peters et al 1991; Rosenfeld 1996; Steege 1998) Le ading biomedical practitioners recognize that attention to a br oad range of biologi cal condition as well as to social and psychological factors is necessary for effective management of CPP, however, establishing and implementing clinical strategies that encompass t hose intentions that are practical for physicians and accepted by patients is not easily accomplished. Studies that examine outcomes to medical care for CPP are of inconsistent quality adding to the difficulty biomedical practitioners face in establishing efficacious clinical decision models for women with this complaint. (McGuire and Hawton 2005; Proctor, Hing, J ohnson, Murphy 2005; Stones, Cheong, Howard 2005; Young and Jewell 2005) The best outcomes appear to be associated with integrated, holistic or interdisciplinary approaches to care (Collett 2005; King, Ling, Rosenthal 1991; Milburn, Reiter, Rhomberg 1993; Peters et al 1991; Reiter and Gambone 1990; Steege 1998); however, holism in biomedicine often translates in cl inical practice to an attempt to consider all medical specialties, which in essence equates to a consideration of all body systems, rather than a true equal weighing of biological, social a nd psychological. Holism from a biocultural perspective includes attention to the political, ecol ogical, and economic as well as biological and psychological that goes well beyond epidemiological style of reporting social categories such as ethnicity, race, age and gender.(Hahn and Gaines 1985; It may be that holistic health care as defined and delivered within a medical system that is fundamentally di sease based remains inadequate to fully address the dynamic interactions between the many dimensi ons of a biocultural health problem such as

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94 chronic pelvic pain in women. The most holistic care in biomedicine for CPP most likely occurs in clinical settings staffed by pr actitioners with special interest in the condition, such as those described by Peters et al (1991) and were operated at the Univer sity of Tennessee, Memphis in the 1980s and 1990s (Myers et al 1991).

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95 CHAPTER 3 DESIGN AND METHODS Introduction There are th ree aspects to this dissertation pr oject, first a critical summary of current biomedical practices and assumptions about chroni c pelvic pain in wome n (Chapter 2); second a prospective descriptive correlational examination of relations hips between selected ethnocultural and biomedical profile va riables in the sample of women with chronic pelvic pain who participated in this study; thir d an ethnographic exploration of how the women with CPP in the study sample describe the social roles and respon sibilities in which they are routinely engaged and their perceptions of how pelvic pain influe nces their daily functioni ng in those roles; of their explanations of the cause s of their chronic pelvic pain ; and of their perceptions of biomedical treatment for chronic pelvic pain. This project was approved by the Institutional Review Board (IRB) at the University of Florida. (Protocol #2003-U-523). Written and verbal explanations of the study were provided at all study sites by the prin cipal investigator, even if the in formed consent was already signed by the participant and witnessed by clinic staff prio r to our initial meeting. HIPPA regulations were followed in all correspondence, conversation and record management. All participants received identification numbers (ID) numbers; all materials were kept in a locked, fireproof portable filing cabinet during the PIs field visits to clinical sites. Only the PI and the faculty supervisor have access to records that identify participants. A paid typist was utilized to transcribe some of the tape recordings. Only the ID number used to identify participants on the recordings. Study Population and Sampling The target population of this study is ethnically diverse wom en with chronic pelvic pain who seek biomedical care for the condition. Purposive sampling wa s utilized to locate women

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96 with chronic pelvic pain for recruitment to the study. Women seeking biomedical health care services for chronic pelvic pain were recruited at selected c linical sites that were known to provide specialized services for pelvic pain. E nglish speaking women age 18 years or older were accepted in the study, otherwise there were no exclus ionary demographic critieria, however, an ethnically diverse sample of women with pelvic pain was sought, with th e specific intention of including equal numbers of Af rican American and non-Hispanic white (European American) women. Women with a biomedical diagnosis of chronic pelvic pa in, a related subset diagnosis, or current complaints consistent with a diagnosis of chronic pe lvic, were included in the study. Women with more specific pelvic pain dia gnoses such as endometriosis, vulvadynia, dyspareunia, vestibulitis, irritable bowel syndrome, interstitial cystitis, among the many other possibilities, were accepted into the study as long they reported experiencing pelvic pain for longer than 3 months. Chronic pelvic pain was de fined according to the biomedical standard of pain of 3 or more months duration localized in the anatomic pelvis considered severe enough by the woman experiencing it to require medical or surgical consultation and/or to limit normal functioning. (Howard et al 2000; Steege 1998) Clinical sites (privately owned physician offices and physic al therapy clinics) known to offer health care for women with chronic pelvic pain were identified as potential locations for participant recruitment and data collection. Patient or client et hnicity was considered in the selection of sites for data collection as well as the clinical services offered there for pelvic pain. The initial intention was to include clinical s ites that served African American, non-Hispanic whites and Latina women in both Tennessee and Virgin ia. After identifying potential sites, an initial phone and/or email contact was made with clinical directors followed by meetings on site to discuss the details of the project. Study sites were ultimately selected in the Tennessee cities

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97 of Knoxville, Nashville and Memphis; a viable clinical site for ongoing pa rticipant recruitment and data collection was not identif ied in Virginia, although one participant was recruited there. Mountain Spirit Physical Therapy is a privately owned physic al therapy practice located just outside Knoxville, Tennessee in the city of Maryville, Tennessee. The proprietor and sole practitioner, Donna Edwards, is a board certified clin ical specialist in orthopaedic physical therapy (American Board of Physical Therapy Ex aminers) whose practice is focused on chronic pelvic pain and related pelvic problems such as urinary and fecal incontinence. Donna is recognized in the medical and physical therapy co mmunity in Eastern Tennessee as a source for specialized physical therapy care for the unique health problems asso ciated with the pelvic floor musculature. The clinic usually schedules 40 appointments each week, 8 appointments per day. The majority of the clients are women with pe lvic related complaints although some men were treated at the clinic as well. Most patients/clients are refe rred to Mountain Spirit Physical Therapy by gynecologists, urogynecologists, urologists and colorectal surgeons from Knoxville, Tennessee. At the time of the study Mountain Spir it Physical Therapy had been in operation less than 1 year in the city of Maryville; previ ously, Ms. Edwards was an employee of private physical therapy practice in Knoxville, Tennessee, opening her own practice largely based on her success in building a clientele in the specialized area of pelvic health. When Ms. Edwards opened her own office, she was required to locate outside the Knoxville c ity limits according to the requirements of a non-compete clause in he r previous employment contract. Consequently, many of her clients, and many of the women from her clinic who particip ated in the study, drove from Knoxville to Maryvill e (miles) for physical therapy appointm ents and to participate in this study.

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98 Knoxville is the largest c ity in Eastern Tennessee and is the third largest city in the state of Tennessee (Memphis and Nashville are larger). Geogr aphically Knoxville is located in the valley between the Great Smoky Mountains and the Cu mberland Mountains. The city of Knoxville has a population of approximately 200,000 with a city and county combined population of just over 700,000. The population is predominately white non-Hi spanic (87.9%). African Americans make up approximately 9% of the population of Knoxvill e, less than the national average an the Tennessee average (16.9%) In Bl ount County, where Maryville is located, the percent of African Americans is much lower at 3% of th e population with non-Hispanic whites comprising 94.6%. ( www.fedstats.gov ) Knoxville is hom e to the main campus of the University of Tennessee as well as several other local and stat e supported smaller colleges. The percent of the population in Knox County with bachelors degrees or higher is 29 %, higher than the Tennessee average of 19.6%. ( www.fedstats.gov ) The clin ical setting in Memphis was Womens Health Specialists, LLC, a private medical practice owned by four physician partners, obste trician/ gynecologists and urogynecologists. Womens Health Specialists is well known as a center for pelvic pain treatment among biomedical practitioners, gynecologi sts in particular, both regiona lly and nationally. The partners are actively engaged in clinical research as well as practice and were my colleagues in previous research projects on utilization of physical therap y in the care of women with pelvic pain (King et al 1991) and socio-cultural as pects of chronic pelvic pain. (Myers et al 1990) Memphis is located in the southwestern corner of the stat e of Tennessee on the eastern bank of the Memphis River. The city limits of the city of Memphi s roughly coincide with Tennessees borders with Mississippi to the south and Arka nsas (via the Mississippi Rive r) to the west. The population of Memphis numbers approximately 650,000. Roughly 62% of the Memphis population is African

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99 American and 35% is non-Hispanic white. (http://memphis.areaconnect.com/statistics.htm) The percentage of African Americans in Memphis is higher than the national average as well as the Tennessee average (16.9%) Womens Health Specialist s was identified as a potential site for the study in part due to the access to African American women Memphis affords as well as the reputation of Womens Health Specialists as a ce nter for care of wome n with pelvic pain. The Nashville Alliance for Sexual Health (NASH) is an interdisciplinary organization of health care providers and patient advocates focused on improving health care for women and men with pelvic heath issues that affect sexu ality and sexual health. NASH was established in 2004; just before data collection commenced in this study, and was util ized to recruit study participants in Nashville, Te nnessee. NASH is a relatively sm all organization comprised of close to two dozen individuals with a core membership that routinely attends meetings of approximately a dozen individuals. Members of NASH include sex therapists, physical therapists, physicians, medical social workers, nurse practitioners, psychologists, patients and patient advocates. The group conducts monthly meetings at various clinical sites in the Nashville area. I made a presentation on th e this project at a NASH meeti ng that was attended by the president of the Nashville area Interstitial Cystit is Association (ICA) who invited me to recruit participants at an upcoming meeting of that orga nization. Nashville, the capitol of Tennessee, is located in the middle or central portion of the state. Geograp hically it is located on the Cumberland River situated in the basin su rrounded by the Cumberland Plateau. Music, government and health care are the primary i ndustries in the Nashv ille area. The African American population in Tennessee is 14.8% percent of th e total population ( http://www.eeoc.gov/stats/census/variables ) in Nashville, African Am ericans comprise 26.8% of the population; white non-Hispanics are 64 % of the total Nas hville Davidson County

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100 population. Several universi ties are located in Nashville incl uding Tennessee State University, a historically black university (HBCU). Approxima tely 30% of the population of people over age 25 in Nashville hold a bachelors degree or higher. ( www.citydata.com ) In an attem pt to assure th e inclusion of white Hispanic s in the study population, a free health clinic in Winchester, Virginia that serv ed migrant farm workers was approached regarding participation in the project. The nurse practitioner in charge of the clinic agreed to a meeting to discuss participation in the pr oject but during that meeting declined to allow participant recruitment at that site stating that pelvic pa in was not a problem for the women seen at that clinic. When she was probed during the convers ation to elaborate on gynecological symptoms expressed by women who sought care at the clinic she recalled noticing that many Latino women complained of abdominal bloating but stated she did not believe there was pain associated with that complaint. She did wonder if perhaps the condition I was mentioning (pelvic pain) was somehow related to the bloating complaints, however, she was unwilling to cooperate with the project due to percepti ons about the absence of pelvic pain in her patient population. She indicated it would not be worth the time required to initiate the project in that clinic as there was not a significant problem with pelvic pain among the women seeking care there. In addition to the free clinic local physical therapy practi ces and massage therapy clinics in Winchester were approached about serving as a study site; however a suita ble site with willing proprietors was not identified. In the course of recruiting sites, however, one of the health care practitioners approached by the PI volunteered that she had a long history of chronic pelvic pain and asked to participate as a subject in the study. Winchester is lo cated Fredrick County, Virginia about 50 miles west of the Washingt on, DC metropolitan area in the Shenandoah Valley. Agriculture work, primarily in apple orchards, attracts a large population of migrant

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101 farm workers. Shenandoah University, a small libera l arts college is located in Winchester. Local service industries, education and manufact uring are the other primary employers. Data was collected over a 14 month period of ti me, with participant recruitment initiated by clinical staff several weeks be fore the initial interviews we re conducted. In Memphis, many participants were recruited by staff while inte rviews with other women were underway on site. At the Knoxville site, the clinic director set a schedule in advance of my visits for interviews with study participant. In Knoxville, interviews were conducted in one treatment room while routine clinical appointments occurred as usual in the clinics s econd treatment room. Once study sites were in place, written announc ements about the project were posted in visible locations in waiting areas of the clin ics in Memphis, Knoxvill e and Nashville; some participants read the announcements and initiated a discussion about the study with a member of the clinic staff. In some cases, women with appointments were verbally informed of the study by clinic staff members who asked if they were inte rested in participating and supplied them a copy of the announcement and the informed consent if they indicated an interest. In Nashville a presentations were at a meeti ng of NASH and at a meeting of the local Interstitial Cystitis Association in attempts to recr uit participants. All pa rticipants received a copy of the Patient Education Booklet published by the International Pelvic Pain Soci ety (IPPS) and a gift of a oneyear Patient Membership in IPPS (patient me mbership dues were $35.00 per year). Additional patient appropriate education materials from various health care organizations such as Section on Womens Health, American Physical Therapy Asso ciation were available for participants to review with several publications available for participants to ta ke home if they desired. An expected financial benefit of participation was the physical therapy exam ination conducted as a part of the study; the cost of a physical ther apy examination for chronic pelvic pain would

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102 usually be billed at a cost of between $100$200 pe r session. Participants we re also expected to gain information about their own physical conditi on as it relates to pelvic pain from that examination. Women who participated were provid ed the results of their strength, mobility and posture measures and received professional advi ce regarding the use of therapeutic exercise, therapeutic activities and physical agents such as heat and cold modalities to address the impairments identified in during the assessments. Women who had to travel to the study site at a time outside of regularly schedul ed clinic visits in order to participate in the study were reimbursed for travel expenses incurred such as taxi/bus fare and/or mileage up to a maximum amount of $10.00 per visit. Participants were informed th at psychological stress might occu r when they were are asked to address the pain and their illness experiences during the interview process. Previous interview research with women with pelvic pain indicates that lack of opport unity to discuss the details of the pain experience is a common so urce of frustration for women with this condition; discussing the pain experience is reportedly considered desirable and benefici al by many women with chronic pelvic pain. (Grace 1995) It was antic ipated that most women would welcome the opportunity to discuss their experi ences with chronic pelv ic pain rather than be distressed by it. Some of the questions covered in the interviews address potentially stressful or embarrassing experiences for the participants including questio ns about drug and alcohol use, sexual activity, and abusive encounters. During the interviews it was stressed that ther e are no right or wrong answers and that all information was confidentia l. The risk of embarrassment during the physical measurements was mitigated by the privacy of th e environment (private clinic offices and/or treatment rooms were utilized for the interviews and physical measurements), the use of the participants own clothing and/ or hospital gowns (participants choice) and by the professional

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103 demeanor of the investigator. None of the women in the study expressed distress from participating in the study; many expressed that is was beneficial to speak in depth about the experience, particularly to another woman. Materials and Measurements Measurement Instruments Standardized and non-standardized clinical sc reening questionnaires, standardized physical m easurements as well as structured and semi-str uctured interviews were utilized to collect data from and about the women who participated in the study. Ethnicity data was collected by selfreport from study participants. Their responses were documented on a form modeled after the Ethnicity and Pain Survey utilized by Maryann Bates in her studies on chronic pain. (Bates 1996) A copy of the form utilized in this study title d Ethnicity Survey appears in Appendix a. The Pelvic Pain Assessment Form (Appendix A) is a medical history and physical form developed by the Research Committee of the International Pelvic Pain Society. The majority of the demographic, diagnostic, pain and other clinical data collected from the study participants were documented on the Pelvic Pain Assessment Form which also served as the guide for the structured portion of the interview. The study ID number was substituted for Chart Number (see Appendix A) on page one of the form. Physical examination conducted as a part of this study was focused on findings associated with musculoskeletal origins of CPP commonly a ddressed in a physical therapy examination as the PI is a physical therapist with a current li cense to practice in the states of Virginia, Tennessee, Mississippi and Florida at the time of the study. Select ed physical impairments were measured using non-invasive procedures that are routine components of physical therapy examinations for muscle length, muscle strength joint mobility and posture. Impairments and measurements were selected based on previous findings on the musculoske letal status of women

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104 with chronic pelvic pain. (Baker 1993; King et al 199) that identif ied a commonly occurring postural pattern among women with pelvic pain la beled Typical Pelvic Pain Posture (TPPP). The impairments measured are based on Kendall and McCreary (1983) and Kendall, McCreary, Provence, Geise, Rodgers, Romani 2005) describi ng the physical impairme nts associated with specific faulty postural patterns as well as the fi ndings of the previous studies on women with pelvic pain. (King et al 1991) The specific physical impairments measured were hip flexor muscle length, abdominal muscle strength, and passive hip rotation range of motion, low back posture and pelvic girdle stability. Structured interviews followed the questions on the PPAF. In some cases, the form was read in its entirety to participants and their an swers documented by the PI. In other cases, women completed some of the PPAF themselves, which was then reviewed and discussed with the participant during the interview. Information collected during the PPAF portion of the interview included causality, pain intensity, pain characte r, health and medical history, social support, functional limitations and abuse history. On ce the PPAF was completed, participants were asked to respond to questionnaire us ed to rate the traits heritage consistency (HC) and locus of control (LOC). The questions used to measure HC and LOC were based on the items from Bates (1996) Ethnicity and Pain questionnaire which she used to measure those traits among other traits, among others, in a multi-ethnic chroni c pain population. Bates selected items from Rotters (1966) locus of control scale to measur e internal and external LOC; five items were internally worded and five items were externally worded. Bates reverse sc ored internal items and heritage consistency. In this study, separate scores were calculated for internal lo cus of control (ILOC) and external locus of control (ELOC), w ith a high score of 5 possible for each. Bates used items related to family and community connections to measure degree of heritage

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105 consistency (ties to ethnic heritage); the items she used were based on the work of Estes and Zitzow (1980) and Spector (1985). Five items ba sed on Bates questionnaire were used in this study to measure HC. All items in this portion of the questionnaire were based on a Likert-type scale, using (0) not applicable (1) somewhat disagree (2) disa gree strongly (3) agree somewhat (4) agree strongly. Semi-structured interviews were used to gath er narrative information about the lifestyle of participants beyond the specific questions on the Pe lvic Pain Assessment form. Social roles and responsibilities, social a nd material resources, health beliefs a nd behaviors related to pelvic pain as well as the impact pelvic pain on their liv es were described by participants. The primary purpose of the interviews was to explore the social context of the lives of the women in the study as well as the social conseque nces of living with chronic pe lvic pain. Study participants perspectives on the cause of their pain and on th e effectiveness of biomedical treatment were also solicited during th e interviews. Guiding questions ut ilized in the interview found in Appendix a. Variables Ethnicity was operationalized by self -report with responses no ted on the Ethnicity Survey (Appendix a). Participants were given the option of selecting fr om a list of ethnic categories (suggested categories were based on the US Cens us) or writing in their own response to both primary and secondary ethnicity. The Ethnicity Survey also asked about language(s) spoken at home and the name of their birth country of origin, based on Bates (1996). Age was operationalized as the age in years on date the Informed Consent was signed using the birthdates reported by participants and documented on the PPAF. Pain intensity was recorded on the Pelvic Pain Assessment Form (International Pelvic Pain Society) which includes two body diagrams (front and back poses) that provide women a place

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106 to draw in the location of their pain. Near the beginning of each interview, participants in the study were asked to draw on the body diagram (using an X to mark the area of most intense pain and shading in the other areas of pain). The num eric rating scale for pain intensity located on page one of the Pelvic Pain Assessment Form (PPAF) was utilized to determine level of pain intensity. Participants completed the entire questionna ire, however, only most severe current pain intensity, pain intensity with sexual interc ourse and acceptable level of pain were coded for analysis in this project. Numeric scales for rating pain intensity from 0=no pain to 10=worst pain imaginable on 15 types of pain a ssociated with pelvic pain ar e included on the PPAF. Three of the 15 choices refer to pain with sexual activity (Deep pain with intercourse; Pelvic pain lasting hours or days after intercourse; Bu rning vaginal pain with sex). Pa rticipants were considered to have pain with sex if they responded above 0 on any of those three items; the number recorded for pain with sex was the highest intensity rati ng they chose on a pain with sex item. Several women added numbers above 10 on the form when rating their pain; in those cases, pain intensity was recorded as 10. The highest number reported for any of the pain categories that related to pelvic pain was documented as the leve l of overall pain, a category designed to capture the severity of the pain women in the study were experiencing. Excluded from consideration for most severe pain were the categor ies of migraine and backache. Abuse/Assault was identified from the respons e to the screening ques tions for abuse that are found on page 8 of the PPAF. The coding proce dure utilized in the initial codes for this variable were as follows: 0=no history of emoti onal, physical or sexual ab use as child or adult; 1=sexual abuse as child/adolescent;2=sexual abus e or assault as adult (over age 18);3=physical abuse as child;4=physical abuse as adult;5=se xual & physical as chil d6=sexual & physical as adult;7=emotional abuse;8=emotional & se xual child9=emotional & sexual adult;10=EPS

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107 child;11=EPS adult;12=Emotional & physical ch ild13=emotional & physical adult; 99=missing data. These categories were later collapsed into 3 categories, sex, othe r, and no abuse in the recode when data was entered into SPSS. The last question on page two of the PPAF states Of all the problems or stresses in your life, how does your pain compare in importance ? Response choices are either 1) important problem or 2) just one of several/many problems. This was recorded as the Life Problem Rank. Participants were asked at the end of the intervie ws if they were getting better, getting worse or staying the same. Their answers were recorded on the semi-structured interview form. A body systems approach was used to establish a biomedical profile for each woman in the study. The profile was determined based on the pr esence or absence of either a documented medical diagnoses or a positive response to scre ening questions on the Pelvic Pain Assessment Form for medical problems known to be associated with chroni c pelvic pain as previously described in this chapter. Th e diagnoses identified were code d by body system; some women had several diagnoses under one body system, others might have one diagnosis under a particular body system. The presence of any diagnosis asso ciated with CPP in that body system was considered a positive finding and resulted in a code for that system. The body systems involved were the reproductive, urogenital, gastrointestinal, musculoskele tal, and psychological. The Pelvic Pain Assessment Form guides the interviewer, or as it is intended, the clinician, through a detailed medical screening process that uses a combination of validated clinical screening tools and original questions to review the body systems known to contribute to pelvic pain in order to identify potential pathology. Vali dated tools for screening for gastrointestinal causes of pelvic pain (Drossman 1994), sexual abuse, Leserman and Drossman 1995, alcohol abuse (CAGE), and functional changes are f ound on pages 2-8 of the form. Information

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108 documented on theses sections of the form were u tilized to develop a biomedical profile of the women in the study using the review of body sy stems approach common to the biomedical diagnostic process. The coding procedures util ized for this secti on were as follows: Gynecologic (GYN) was the code for Gynecological Signs or Symptoms. Documentation of 1=Yes, reports Gynecological signs or symptoms associated with problem either currently or in past; or 2=No, Gynecological Signs or Sympto ms not reported. This item was coded yes or if reported pain with orgasm, ovarian pain, positive response to pain with periods (during before or after-non cramping), diagnosis of endom etriosis, dysmenorrheal, ovarian cyst, uterine during the interview or if the medical record revealed that information. Urological (URO). Urological system screening que stions were found on pages 1 and page 3 of the Pelvic Pain Assessment Form Coding for Urological System (URO) was a follows: 1=yes, reports Urological Signs or Symptoms; 2=No, does not report Urological signs or Symptoms. The results were recorded on Pelvic Pain Assessment form page 1 (pain with full bladder) and page 3-reported as yes if answered in positive to questions regarding stress urinary incontinence (SUI), urinary frequency, urinary urgency, and/or or nocturia. Gastrointestinal (GI). Gastrointestinal Si gns or Symptoms from Drossmans Bowel Disorders questionnaire appear on page 3 of the PPAF form; participants with positive responses to the items on this questionnaire recorded as positive for GI system (coded as 1 on the initial file); a designation of 2=No, doe s not report Gastrointestinal Signs or Symptoms was recorded if there were not positive responses to this sec tion of the PPAF. Information regarding other gastrointestinal disorders or symptoms was recorde d, but not coded or analy zed for this report. Psychological (PSY) The question related to treatmen t for depression was utilized to operationalize a psychological prof ile in this study. A ccording to the code book, the initial codes

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109 were such that a 1=Yes, reports current or pr evious treatment for depr ession (page 7 PPAF) and 2=No, reports no current or prev ious treatment for depression Musculoskeletal (MSK). was coded as either 1=particip ant fits the Musculoskeletal CPP Pattern or 2=Participant does not f it pattern in 2 or more findings. To fit the pattern at least 2 positive findings on physical examination of the following: hip flexor length via the Thomas Test; Hip Rotation Restriction-Passive Range of Motion of Hip Internal Rotation, measured in Lying; an increased Lumbar lordosis (12> at L5 -S1); Abdominal muscle strength measured via manual muscle testing at 3/5 or less) Hip flexor length was measured with the M odified Thomas Test ( Kendall et al 2005; Magee 2002); manual muscle testing was used to measure abdomina l muscle strength, specifically the modified sit-up and a leg-loweri ng tests as described by Kendall et al (2005); Hip rotation range of motion was measured by use of an International Standard of Orthopaedic Measurement (ISOM) standard hand held goniomet er (Magee 2002); low back posture by use of an inclinometer to measure degr ees of lumbar spine curvature in standing (Magee 2002); pelvic stability was assessed with the Trendelenbergs Test (Evans 2002 and Magee 2002). Participants wore swim wear, underwear, shorts and halters, or hospital gowns as per personal preference during the measurements. Physical measurements were documented on the Physical Assessment form (Appendix a) that was developed for this study Prior to the physical measurements, participants were shown photographs and diagrams (Appendix a) of each procedure and also shown the examination tools that would be utilized; demonstrations were also used if needed to be certain participants unde rstood the procedures and the purpose of the various exam tools.

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110 Analysis Transcription and Coding The Inte rviews were tape recorded and transc ribed. Transcription services were provided by Melissa Graham, MSHS, and Medical Transc ription Services, 151 South Cory Drive, Edgewater, Florida. Case numbers were as signed from #001-063 in chronological order of signed Informed consent beginning with particip ants from Memphis, followed by Nashville, Winchester and Knoxville (1-63). The coding pr ocedures and operationa lize for demographic, biomedical, ethno-cultural, and treatment variable s utilized in the study appear in Appendix d. Coded data was initially loaded into an Excel database and later moved to SPSS. (Statistical Package for Social Sciences)Tra nscribed interview data were coded and triangulated with the PIs written notes and written questionnaire data. Narrative data were examined for the presence of themes that were reported in othe r studies on women with pe lvic pain including the need to know the cause of the pain (Grace 1995) invisibility and stigma, (Theve-Gibbons 2000) and fragmented approaches to biomedical health care for the condition. (Grace 1995; Grace 1998; Rosenfeld 1996; Steege 1998 ; Ling 1993) The narrative quest ions specifically asked participants to address their social roles. In a ddition to examining for the presence of previously described themes, the narrative data were examined for patterns in womens descriptions of their roles and responsibilities as well as their descri ptions of how they negotiated those roles while experiencing chronic pelvic pain. Word files were created for each theme and quotations consistent with specific themes were saved to analogous file. Examples of these files appear in Appendix d. As unplanned themes emerged, the same process was followed. Statistical Analysis First, descriptive statistics were used to summ arize the characteristics of the study participants. More specifically, age, ethnicity, educati on level, marital stat us, head of household

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111 and work status. In addition to using descriptive statistics to present th e characteristics of the participants, a series of bi-v ariate and multi-variate analyses were conducted to address the research questions. To address research question one a series of bi-variate analyses were first conducted to examine if there were any significant ethnic differences in pain-related variables. More specifically, a series of independent t-te sts were conducted. If th e results from the bivariate analysis are not significan t at the significance level of .05, it would be concluded that no ethnic differences. If, however, the results from a ny of the bi-variate anal yses are significant at the significance level of .05, follo w-up multi-variate (OLS regressi on) analyses was conducted to further explore if the observed ethnic/ racial di fferences remain after controlling for additional variables. The set of socio-demographic (age, ed ucation level, work status and marital status) variables and psycho-social (her itage consistency and locus of control) variables would be introduced into the regression mode ls sequentially, and these two sets of variables were intended to account for the potential racial differences. If the coefficient on the dummy variable of ethnicity in the multivariate regression analysis becomes insignificant (not significantly different from zero), it would be concluded that the observ ed racial differences in the bivariate analysis could be explained with inclusion of the additi onal variables. If, however, the coefficient on the dummy variable of race in the multi-variate regr ession analysis remains significantly different from zero, it would be concluded that racial di fferences exist even af ter controlling for those additional variables and therefore, other explan atory mechanisms and variables are needed in order to assess how racial differen ces affect the pain-related variables. Miller, Campbell, Davis, Furner, Giachello, Prohaska, Kaufman, Perez, 1996; Kenagy & Hsieh, 2005a; Kenagy & Hsieh, 2005b)

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112 The same analytical approach was used to a ddress research question two. That is, a series of bi-variate analyses were firs t conducted to examine if there were any significant racial/ethnic differences in variables on review of systems pr ofile. More specifically, a series of chi-square analyses were conducted. If the results from the bi-variate analysis are not significant at the significance level of .05, it would be concluded that no racial/ethni c differences. If, however, the results from any of the bi-variate analyses are significant at the significance level of .05, followup multi-variate (logit regression) analyses would be conducted to further explore if the observed ethnic differences remain after controlling for additional variables. The set of sociodemographic (age, education level, work status and marital stat us) variables and psycho-social (heritage consistency and locus of control) va riables would be introduced into the regression models sequentially, and these two sets of vari ables were intended to account for the potential racial differences. If the coefficient on the dummy variable of race/ethnicity in the multi-variate regression analysis becomes insignificant (not significan tly different from zero), it would be concluded that the observed racial differences in the bi-variate an alysis could be explained with inclusion of the additional variables. If, however, the coefficient on the dummy variable of race/ethnicity in the multi-variate regression analysis remains significantly different from zero, it would be concluded that ethnic differences exist even after c ontrolling for those additional variables and therefore, other explanatory mech anisms and variables are needed in order to assess how ethnic differences affect the variables on review of systems profile. Research question three was addressed, based on the same analytical approach used to address research questions one and two. First, a bi-variate (chi-square) analysis was conducted to examine if there were any significant racial/eth nic differences in the perception of treatment effects. If the results from the chi-square analys is are not significant at the significance level of

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113 .05, it would be concluded that no racial/ethnic differences. If, however, the results from chisquare analysis are signifi cant at the significance level of .05, follow-up multi-variate (multinomial logit regression) analyses would be conducted to further explore if the observed ethnic differences remain after controlling for additional variables. The set of socio-demographic (age, education level, work stat us and marital status) variables and psycho-social variables would be introduced into the regression models sequentially, and these two sets of variables were intended to account for the potenti al racial/ethnic diffe rences. If the coefficient on the dummy variable of race/ethnicity in the multi-variate regression analysis becomes insignificant (not significantly different from zero), it would be concluded that th e observed ethnic differences in the bi-variate analysis could be explained with inclusion of the additiona l variables. If, however, the coefficient on the dummy variable of ethnicity in the multi-variate regression analysis remains significantly different from zero, it woul d be concluded that r acial/ethnic differences exist even after controlling for those additiona l variables and therefore, other explanatory mechanisms and variables are needed in orde r to assess how ethnic differences affect the perception of treatment effects. The analytical approach used to address research questions one, two and three reflects the following assumptions: (1) Ethnicity is a variab le that is assumed to represent many complex social and psychological processes and therefore, it was first introduced alone to determine its global effect on the pain-related variables, va riables on review of sy stems profile and the perception of treatment effects. (2) Socio-demographic characteristics, such as age, education, work status and marital status may be associated with pain-related variab les, variables on review of systems profile and the percep tion of treatment effects. This block of variables was therefore entered next. (3) Psycho-social variables, such as heritage consistency and locus of control, may

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114 affect respondents perception of pain-related variables, review of systems profile, and respondents perception of treatment effects. These two variab les are also known to vary by ethnic groups and could explain a ny noted ethnic differences. By introducing this block of variables, the ways in which these factors acc ount for the impact of et hnicity on pain-related variables, variables on re view of systems profile and the perc eption of treatment effects could be examined. It should be noted that given the cross-sectional nature of the data, this study does not intend to make any causal inferenc es through the sequential inclusion of these variables. Rather, the hierarchical order is seen as suggestive only. A similar analyti cal approach has been used to explore racial/ethnic differences in the use of community long-term care services (Miller et al., 1996) and gender differences in social servi ce needs (Kenagy & Hsieh, 2005a) and HIV risks (Kenagy & Hsieh, 2005b). Biographical Profiles Using the exam ple of Martin (1992), a biogr aphical profile was developed for each participant that briefly describes ethnicit y, age group, occupation, family ties and household circumstances. Participants id entity is protected by the use of pseudonyms and by generalized descriptions of occupations. More complete case summaries are presented for selected participants that illustrate the themes that emerged. Text Analysis Transcr ipts of the interviews were reviewed; quotes were coded within each case transcript and later organized thematically. Themes used for the initially coding were selected from previous related work (Grace 1995; Grace a nd Zondervan 2006; Martin 1992; 2001; TheveGibbons 2000) The decision to include the selected themes was based on the recurrence of the theme in the CPP literature and/or the anthropological literature related to chronic pain, chronic illness and/or womens sexual, reproductive and/or mental health and my impressions from

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115 clinical experiences with women with CPP about their experiences and perspectives. Causality, Sexuality, Invisibility, Stigma, Resistance, Fragmentation/Alienation, Mechanical Metaphors, Multiple Role Strain (Spurlock 1995), were themes initially used to organize the data. Categories were modified as additional themes were identif ied and interpreted. Four themes were included in the final presentation of the data: Caus ality, Sexuality, Productivity and Fragmentation. (Appendix C)

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116 CHAPTER 4 RESULTS Sample Characteristics Eighty-one wom en ranging in age from 19 to 79 years old agreed to participate in this study. The total included 59 women in Memphis, 18 in Knoxville, 1 in Winchester and in 3 in Nashville. All participants completed the Info rmed Consent and were entered into the study database by name and coded identi fier. Of the 59 women who agreed to participate in Memphis, 15 did not complete the process, one withdrew stating the questions were too personal; the remaining 13 did not return for follow up meetings; several attempts were made to follow up, and some participants agreed to follow up a ppointments but for various reasons, some never known to the principal investigat or (PI), did not return. In Kn oxville, two women canceled their interviews; one decided to withdr aw from the study and the othe r had a scheduling conflict. The sample size after attrit ion was 63, which included fifteen Afri can American women, thirteen in Memphis and 2 in Nashville. Given the vast majority of the respondent s (95%) self-reported their ethnicity as either European American or African American, this study focused on exploring the ethnic differences between the European American and African American respondents. The three respondents (o ut of the total sample of 62) who were in a race/ethnicity category other than European American or African American were excluded from statistical analyses; however, data from t hose three participants was utili zed in the narrative component of the analysis. Race/Ethnicity. In Memphis, 16 of the initial participants identified their ethnicity as African American, one as Mexican-American, a ll others were European American. In the Knoxville group several women indicated a seconda ry ethnicity; responses included Lebanese, Russian, Polish-German, British, American India n, Cherokee, and Irish Cherokee. Secondary

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117 ethnicity was not coded or furthe r analyzed for this report. Ma ny of the women in both Memphis and Knoxville wrote in their primary ethnicity using choices outside the official US census selections; examples include Southern, C ajun, American, All American, American Mutt, and East Tennessean. One woman said I guess Southern would be what I consider my ethnicity, but I wear shoes; th ey think we dont but we do. One woman in Memphis referred to herself as PING for PolishIrish-Native Am erican-German and another expressed hers as British American. All of these women were coded as European American. Three participants, two in Memphis and one in Knoxville indicated Jewi sh as a secondary ethnicity. In Nashville, two of the participants were African American and one was European American; the African American women both met with the PI one co mpleted the study proce ss, the other did not complete all the questionnaire data due to time constraints. The white Euro-American participant in Nashville did not participate further in the study after the informed consent was completed due to scheduling difficulties. Age The mean age of the women in the study was 40.7; 39.07 for the African Americans (n=14) and 40.39 for the White non-Hispanic women (n=45); the Mexican woman was 29 years old. (Table 4-1) Table 4-1 Age and Ethnicity Ethnicity Age African American 39.07 European American 40.39 Education. All but one of the study participants had completed high school, and that participant, the youngest in the sample, was enro lled in high school at the time of the study. The distribution of highest level of education completed was 45% high school graduates, 30% college graduates, 12% some college and 13% some gradua te education. (Table 4-2)

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118 Table 4-2 Education and Ethnicity Ethnicity Less than 12 years High school graduate Some college or technical school Bachelor's degree Graduate education MissingTotal African American 0 11 1 0 2 0 14 EuroAmerican 1 16 11 10 6 1 45 Totals 1 27 12 10 8 1 59 Marriage and Household. The majority (60%) of the wo men in the study were married. Of those unmarried, 10% (n=6) were engaged or in a committed relationship; 10% (n=6) were divorced; and 1 was widowed. The mean number of people living in the household for all women in the study was 2.6. The mean number of children was 1.3 with 50% difference in the mean number of children between African American ( M =2.1) and White women ( M =1.09). (Tables 4-3 and 4-4) Table 4-3 Marital Stat us and Ethnicity Ethnicity Married Single DivorcedCo mmitted RelationshipWidowed Total African American 8 1 4 0 1 14 Euro-American 29 8 2 6 0 45 Total 37 9 6 6 1 59 Table 4-4 Household Size and Race/Ethnicity Race/Ethnicity Household SizeChildren Black/African American Mean 2.93 2.14 N 14 14 Std. Deviation1.639 1.610 White (non-Hispanic) Mean 2.56 1.09 N 45 45 Std. Deviation1.099 1.104 Total Mean 2.64 1.34 N 59 59 Std. Deviation1.242 1.308 Employment. The majority of the women in the study were employed outside the home, approximately 50% full time and 5% part-time; 10% of the study participants described their occupation as homemaker; 10% were students no t otherwise employed; approximately 15%

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119 reported they were not working because of their health; and 2 women described themselves as retired. Detailed data is displayed in Table 4-5. Table 4-5 Ethnicity and Work Status Ethnicity FFullTime PParttime Not Working Health Not Working Other DisabilityStudent RetiredTotals African American 10 0 0 2 2 0 0 14 EuroAmerican 21 3 6 4 8 2 1 45 Totals 31 3 6 6 10 2 1 59 Abuse/Assault. Abuse/ assault occurrence was high among the women in the sample; 60% reported history of either sexual, physical or combined sexual and physical abuse and/or assault.(Table 4-6) Physical and sexual abuse were combined for this analysis as the literature supports strong associations between sexual assau lt and physical threat or physical harm and the development of pelvic pain. (Golding 1996; Latt he et al 2006) Among black/African American women 69.2% reported a history of sexual abuse (none of the Afri can American women reported Table 4-6 Abuse History and Ethnicity Abuse History African American European American No abuse 4 18 Percent No 7.3% 32.7% Yes-Physical or Sexual Abuse 9 24 Percent Yes 27.3% 72.7% a history of physical abuse alone) compared to 72.7% of the white-non Hispanic women. Four of the white-non-Hispanic women included in this group reported physical abuse as a child; 20 of the 24 with a positive response for sexual and/or physical abuse reported sexual abuse or assault. Four women refused to respond to the questions regarding abuse; other records with missing abuse data were incomplete for reasons other than refusal to respond. Records of 55 African American and white-non-Hispanic women had comp lete data on abuse/assault history. (Table 4-

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120 6) The one white-Hispanic woman in the study was excluded; however, her history was positive for sexual abuse. Clinical and Social Correlates Research qu estions were estab lished that called for examin ation of correlations between selected socio-cultural and biom edical variables; variable sele ction was explained in Chapter 3, and was based on clinical relevance as establishe d in the literature review on biomedical and ethno-cultural correlates of chronic pelvic pain. Research question one is: Are there racial/e thnic differences in pain intensity, pain intensity with sexual intercourse and acceptable level of pain among a sample of women with chronic pelvic pain? Using the analytical approach described in Ch apter 3, results of the analyses on exploring the potential racial/et hnic differences in pain intens ity, pain intensity with sexual intercourse and acceptable leve l of pain are as follows: Pain intensity. Results from the t-test show that on average, there was a higher mean level of pain intensity ( M = 9.07, SE = 0.47) among the African American study participants, compared to that (M = 8.31, SE = 0.25) of the white study participants. However, the difference was not statistically significant t (57) = 1.48, p > .05. Given that the results of the t-test are not statistically significant at the .05 level; no furt her (multi-variate) analysis was conducted. Pain intensity with sexual intercourse. Results from the t-test show that on average, there was a higher mean level of pain intensity with sexual intercourse ( M = 8.43, SE = 0.69) among the African American study participants, compared to that ( M = 6.18, SE = 0.49) of the white study participants, and the differen ce was statistically significant t (27.85) = 2.66, p < .05. Given the significant results of the t-test, OLS multip le regression analysis was conducted to further explore the potential racial diffe rences in pain intensity with sexual intercourse and the results are presented in Table 4-7. Model 1 in Table 4-7 shows the regression results of a model with

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121 pain intensity with sexual intercourse as the dependent variable and race as the independent variable. The coefficient on race is significantly di fferent from zero, which confirms the t-test results in the bi-variate analysis. Model 2 in Ta ble 4-7 shows the regression results of a model with pain intensity with sexual intercourse as the dependent variable and ethnicity/race and a block of socio-demographic variables (age, education level, work status and marital status) as the independent variables. With the inclusion of the set of socio-demographic variables, the coefficient on race/ethnicity (as shown in model 2) is no longer significant. According to the analytical approach outlined in Chapter 3, no further analysis would be needed. Table 4-7 Regression Analysis on Pain Inte nsity with Sexual Intercourse (N = 57) Model 1 Model 2 Variables B SE B B SE B Race/Ethnicity White/non-Hispanic Black/African American 2.31 0.98 0.30* 1.95 1.08 0.26 Age -0.08 0.04 -0.30* Education [High school or less] College -1.10 1.19 -0.14 Bachelors degree 1.02 1.21 0.12 Graduate education -1.87 1.32 -0.19 Working outside of home 0.78 0.86 0.11 Married or in a committed relationship 0.95 0.96 -0.13 Constant 6.12 0.48 9.88 1.91 R2 0.09 0.26 p<0.05 Note: a Reference categories are shown in brackets. Acceptable level of pain. Results from the t-test show that on average, there was a higher mean level of acceptable level of pain ( M = 2.68, SE = 0.25) among the white study participants, compared to that (M = 2.54, SE = 0.63) of the African American study participants. However, the difference was not statistically significant t (16.02) = 0.21, p > .05. Given that the results of the t-

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122 test are not statistically significant at the .05 level; no further (multivariate) analysis was conducted. Research question two is: Are there racial/ethnic differences in the biomedical profile among this sample of women with chronic pelvic pain based on a review of systems (ROS) screening approach for reproductive, urological gastrointestinal, musculoskeletal, and psychological systems symptoms or diagnoses? Us ing the analytical approach described in Chapter 3, results of the analys es on exploring the potential r acial/ethnic differences in the screening for reproductive, urological, gastro intestinal, musculoskele tal, and psychological systems are as follows: Reproductive system profile. Among the study sample, 93% of the African American respondents and 89% of the white respondents had a positive respons e to the screening questions for reproductive system symptoms or diagnoses. Results from the chi-square test show no significant racial/ethnic differences in the review profile for the reproductive system, 2(1) = 0.2, p > .05. Given that the results of the chi-square test are not st atistically significant at the .05 level; no further (multi-varia te) analysis was conducted. Urological system profile. Among the study sample, all (100 %) of the African American women and 78% of the white women responded positively to the items indicating urological system related symptoms or diagnoses. Results from the chi-square test show no significant racial/ethnic differences in the profile on the urological system, 2(1) = 3.75, p > .05. Given that the results of the chi-square test are not statis tically significant at the .05 level; no further (multivariate) analysis was conducted. Gastrointestinal system profile. Among the study sample, all (100%) of the African American women and 88% of the white women responded positively to the items indicating

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123 gastrointestinal system related symptoms or diag noses. Results from the chi-square test show no significant racial/ethnic differences in th e profile on the gastrointestinal system, 2(1) = 1.78, p > .05. Given that the results of the ch i-square test are not statistically significant at the .05 level; no further (multi-variate) analysis was conducted. Musculoskeletal system profile. Among the study sample, all (100%) of the African American respondents and all (100%) of the wh ite participants had positive findings for the typical pelvic pain musculoskeletal impairment pattern. Given that there is no observed racial/ethnic difference, no furt her statistical anal ysis was conducted. Although there were no statistically significant ethnic di fferences noted, the findings on the measures of hip internal rotation passive range of motion (PROM) were of interest because of the high frequency (52 women had restricted PROM in hip rotation) and severity of the impairments. Psychological profile. Among the study sample, 71% of the African American women and 76% of the white women responded positively to the items related to psychological diagnosis of depression. Results from the chisquare test show no significant race/ethnic differences in this category, 2(1) = 0.1, p > .05. Given that the re sults of the chi-square test are not statistically significant at the .05 level; no further (m ulti-variate) analys is was conducted. Research question three is: Are there ethnic differences in the perception of treatment effects among a sample of women with chronic pelvic pain? Fo llowing the analytical approach described in Chapter 3, a chi-squa re test was first conducted to e xplore the potential racial/ethnic differences in the perception of treatment eff ects. Among the study sample, 25% of the African American respondents and 56% of the white re spondents reported positive treatment effects, 58% of the African American respondents and 39% of the white responden ts reported no positive treatment effects, and 17% of the African American respondents and 5% of the white

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124 respondents reported being unsure about treatment e ffects. The results from the chi-square test show no significant racial/ethnic differences in the perception of treatment effects, 2(2) = 4.34, p > .05. Given that the results of the chi-square test are not statistically sign ificant at the .05 level; no further (multi-variate) analysis was conducted. Research question four is: Are there ethnic differences in perceptions of how chronic pelvic pain impacts life among this sample of women with chronic pelvic pain? Following the analytical approach described in Chapter 3, a chisquare test was first c onducted to explore the potential ethnic differences in the perception of how chronic pelvic pain impacts life. Among the study sample, 64% of the African American respondents and 51% of the white respondents perceived chronic pelvic pain to be the most im portant problem they face in life. (Table 9) The results from the chi-square test show no significant ethnic diff erences in the perception of how chronic pelvic pain impacts life in re sponse to the question posed about it, 2(1) = 0.73, p > .05. Given that the results of the chi-square test are not statistically signi ficant at the .05 level; no further (multi-variate) analysis was conducted. Table 4-8 CPP Rank as a Life Pr oblem by Self-Re ported Ethnicity Problem Rank African American European AmericanTotals Not Most Important 5 21 26 Yes Most Important 9 22 31 Research question five is: Ar e there ethnic differences in history of sexual or physical abuse or assault among this sample of women with chronic pelvic pain? Following the analytical approach described in Chapter 3, a chi-square te st was first conducted to explore the potential ethnic differences in history of sexual or physi cal abuse or assault. Among the study sample,

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125 57.1% of the white respondents had a history of sexual or physical abuse or assault and 69.2% of the African American respondents had a history of sexual abuse (none of the African American women reported physical abuse). The results from the chi-square test show no significant ethnic differences in the history of sexual or physical abuse or assault, 2(1) = 0.60, p > .05. Given that the results of the chi-square test are not statistically sign ificant at the .05 level; no further (multi-variate) analysis was conducted. Research question six is: Are there significant differences in the perception of treatment effects between women with a history of sexual or physical abuse or assault and women without a history of sexual or physical abuse or assault among this sample of women with chronic pelvic pain? Following the analytical approach descri bed in Chapter 3, a chi-square test was first conducted to explore the potential differences between women w ith and without a history of sexual or physical abuse or a ssault in the perception of treatment effects. Among the study sample, 46% of those with and 59 % of those without a history of sexual or physical abuse or assault reported positive treatmen t effects, 43% of those with and 36% of those without a history of sexual or physical abuse or assault reported no positive treatment effects, and 11% of those with and 5% of those without a history of se xual or physical abuse or assault reported unsure about treatment effects. The results from the chi-square test show no significant differences between women with and without a history of sexual or physical abus e or assault in the perception of treatment effects, 2(2) = 1.10, p > .05. Given that the results of the chi-square test are not statistically significant at the .05 level; no further (multi-variate) analysis was conducted. Research question seven is: Are there significa nt associations in pain intensity, pain intensity with sexual intercourse and acceptable le vel of pain between women with a history of sexual or physical abuse or assa ult and women without a history of sexual or physical abuse or

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126 assault among this sample of women with chroni c pelvic pain? Using th e analytical approach described in Chapter 3, results of the analyses on exploring the potenti al differences between women with and without a history of sexual or physical abuse or assault in pain intensity, pain intensity with sexual intercourse and accep table level of pain are as follows: Pain intensity. Results from the t-test show that on average, there was a slightly higher mean level of pain intensity ( M = 8.50, SE = 0.40) among those study participants without a history of sexual or physical abuse or assault, compared to that ( M = 8.45, SE = 0.28) of those study participants with a history of sexual or physical abuse or a ssault. However, the difference was not statistically significant t (53) = 0.10, p > .05. Given that the results of the t-test are not statistically significant at the .05 level; no furt her (multi-variate) analysis was conducted. Pain intensity with sexual intercourse. Results from the t-test show that on average, there was a higher mean level of pain intensity with sexual intercourse ( M = 7.03, SE = 0.51) among those study participants with a hist ory of sexual or physical abuse or assault, compared to that (M = 6.32, SE = 0.78) of those study participants without a history of sexual or physical abuse or assault. However, the difference was not statistically significant t (53) = 0.80, p > .05. Given that the results of the t-test are not statistically signi ficant at the .05 level; no further (multi-variate) analysis was conducted. Acceptable level of pain. Results from the t-test show that on average, there was a slightly higher mean level of acceptable level of pain ( M = 1.90, SE = 0.45) among those study participants without a history of sexual or physical abuse or assault, compared to that ( M = 1.57, SE = 0.28) of those study participan ts with a history of sexual or physical abuse or assault. However, the difference was not statistically significant t (48) = 1.06, p > .05. Given that the

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127 results of the t-test are not st atistically significant at the .05 level; no further (multi-variate) analysis was conducted. Biographical Profiles Pseudonym s were used in biographies of participants and specifics of occupation were described generally enough to protect the pa rticipants anonymity. Selected cases are summarized here to provide a brief, descriptiv e depiction of the soci al context and illness experiences lived by the women in the study. Summa ries are organized to include a demographic account, each womans description of the pain she experiences, her views on causality, her response to biomedical treatments, her report on exposure to abuse or violence, and her explanation as to how pelvic pa in has affected her at home, at work, and socially. Names and demographics are modified slightly in these summaries to protect anonymity. Five African American and six European American women we re selected for presentation in the case summaries. Since the majority of women in the study were married, two women in each group are married women, two are divorced and one single, never married. Decisions about which women were chosen for the case summaries were based, in part, on the thoroughness of our interviews. Some women met with me one time for as little as an hour and a half; some womens interview sessions lasted three or four hours. Some women met one time only, others met with me several times over periods of time that varied from one month to one year. Variation in the amount of time spent with each woman largely depended on her schedule, but also on her verbosity as well as her interest in sharing her story and/or fo llowing up with medical care. Many of the women in Memphis met with me several times during follow up visits to the clinic; follow up meetings did not occur in the Knoxville clinic where I met with each woman one time for a minimum of 2 hours. All of the African American women presented here were interviewed at the Memphis clinic.

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128 Sharon Long Sharon is an African American woman in her early 50s. She is divorced, with grown children and grandchildren. She lives alone in Memphis. She is a high school graduate trained for both tailoring and secretarial work; she is now on disability as a result of her health. She started her menstrual period at age thirteen and expe rienced lifelong heavy, painful periods. She has experienced non-cyclic, right lo wer abdominal pelvic pain for over thirteen years. Sharon has severe pain with intercourse, she says The pain makes me not want to have sex; pelvic pain stopped me from being able to take care of my husband. She rates her pain with intercourse as 8/10. She thinks her pelvic pain was caused by colon resection surgery and scar tissue from hernia surgery; her current pain worsened after a hysterectomy. Sharon was raped when she was in her late 20s. She cant recall her exact age at the time. She also describes exposure to emotional abuse and humiliation by an ex-husband. Regarding the effect of pelvic pain on her social life, Sharon says I have no social life because of the pain except for church. I attend church and sit with my grandkids. Other relationships dont get much attention. My mom would like me to visit more. Treatment response she is unsure about, telling me Im not sure if Im getting better; Im on medicine all the time; it seems like if I was better I wouldnt need to take medicine all the time. Lauren Dobson. Lauren is a 42 year old African American woman who is married but lives alone; she states I live alone. I like living al one. She has no children. She has one year of college and says she is trained in mechanic s and electronics but cant do that type of job because of her health; she has tw o jobs, working as a dispatcher and a restaurant hostess. She is also a minister and takes on leadership activities in her neighborhood. She has had pelvic pain in her left lower abdomen for 24 years; she has been in the care of Dr. Ling for it for 19 years, moving as his patient from the university pelvic pain clinic to his private practice last year. Her

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129 pelvic pain is present most of the time but increases with intercourse. She describes painful intercourse at level of 8/10. Although she is not living with her husband she remains sexually active. She states Im not living with my hus band now but we spend time together and make love. As for what causes her pain, Lauren says, I did think it was because of the rape; it started after I was raped when I was 18 years old. I bled fo r two days after I was ra ped. Ive been told it is because of ovarian cysts and scar tissue. In addition to the rape, Lauren describes exposure to emotional abuse as both a child and as an adult. When we talked about how pelvic pain has affected her life, she says I ha ve learned to accept limitations; I tend to have high expectations and thats what gets me down the most-I cant a ccept limits. I think I tend to push. Despite her limitations, she continues to work and relates th e impact of pelvic pain on working life as follows: I have a poor work record because of the pain; timeliness and attendance are not good. I work two jobs now, as a dispatcher and as a hos tess; I am also a minister. I am able to work now, in the past I wasnt able to work. As for her social life, she says I spend a lot of time alone; I prefer being alone because of the pain; I dont want to talk about it. Overall she says that because of the pelvic pain : All things are limited, especi ally my ministry. Pelvic pain affects every other aspect of my life. She also told me there have been some positive outcomes to having pelvic pain for many years. She says It has helped me become more compassionate and understanding of other people. As for the eff ectiveness of treatment, Lauren told me, Im better recently since I star ted the vaginal valium. Pamela Ryder Pamela is 36 year old African Ameri can woman who is divorced and lives with her two daughters (teenagers). She has a high school educati on and on the job training with various government agencies including and past experience in the military. She is currently working in the shipping industry but wants to go to school to be a fune ral director. She is

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130 considering applying for disability because of th e pain she is experiencing at work. She was repeatedly sexually abused as a child between the time she was six and eight years old. She also reports emotional and physical abuse including lif e-threatening physical abuse. She has pain in her lower abdomen and vagina with sexual intercourse and with lif ting and other physical activities. She describes pain that is 10/10 with intercourse 9/10 with lifting that has been a problem for thirteen years. She had a lot to say about her pain experi ence; our first meeting lasted four hours, and we had several follow up m eetings over the next 6 months. Sharon recalls the specific time her pelvic pain started. She te lls me: It started with a pop in my abdomen after sneezing. My husband thinks the doctors are too blame that it was from problems with 2nd C-section; during the 2nd pregnancy I was humiliated by physicia n and five residents in front of my husband the decision for the C-section made by the doctor and my husband, I did not want it; I did not want pregnancy or th e C-section due to pain from 1st c-section; I was already upset to be pregnant 4 months after the first Caesar ean Section (C-section) Now that Ive had a hysterectomy I think the pain is mostly muscular. Pam provided a detailed account of the effect of pelvic pain on her sex life. She tells me My husband thought I had been with another man when I experienced a spell of not being able to grip his penis or feel it; it started when I sneezed before in tercourse and felt a pop in my abdomen. He wouldnt believe me (that I hadnt had sex with someone else. Pam says that Pelvic pain caused my divorce; my biggest thing now is the reason why he claims he left me is because I was not fulfilling him sexually and I e xplained to him why don t you come to some of my doctor appointments with me. I have and new doctor and she can explain to you what it is that I am going through because he was there w ith me with both Cesareans and he was there when they cut. She now lives with her tw o daughters and says that My daughters (young

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131 teenagers) do whatever they can to help me; they think the problem is their being born and stuff. I said its just from what I had to go through to bring you into this world but it is not your fault. The pain is an ongoing consideratio n in relationships with men she tells me that its easier to not have a relationship than to explain the pr oblem to a man. Sometimes a man will understand, sometimes a man doesnt. Sometimes I dont want to go through explaining it to him. I just have close friends, no sex, maybe an occasional movie or come to the house and sit down and my best friend, Matt will come over and cook for me. Hes a good friend. He is in love with he told me. I said I just cant return it what it is. He understands the fee lings and respects that. Whenever he needs me if hes in a rut or if he needs somebody to talk to because were both divorced Im there for him too. It (sex) was mo re comfortable when it was spontaneous. Pam says that an acceptable level of pain woul d be 5/10. If I could get it down to a five I would probably be happy with that. I have been living with this for a l ong time and my mom was telling me just go ahead and accept it and change this phase of your life around this and possibly the fact that you may not be able to get into another relationshi p without explaining it. She also says that Walking takes my mind off the pain; but I cant walk like I used to because of the painI cant even go to the mall without pain. Sharon described the impact of pelvic pain on her working life as follows: I was in the military during my pregnancies. I was injured during my second pregnancy, with back pain, and then was put on VA disability. I work now for the post office; I live in extreme fear of losing my j ob cause of the painI have to try to keep my absences down and I cant do a lot of the lifting required on the jobI would like to get into school to change jobs; my current job is tedious the standing and lifting in creases the pain. In terms of responding to biomedical care, she says I am some better with pain medication, using

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132 disposable heating pads all day (the doctor gave me a prescripti on so I can get my money back for them) and with exercises. I still hurt with the tedious activities at work and the standing. Mary Johnson Mary is a 37 year old African American woman married with three children. She lives with her husband, children and her father-in -law. She is a high school graduate working full time in a clerical position. Marys pain is primarily located in the lower abdominal area, and the sacrum, both sides. She also hurts in arms and wrists and back of thighs from Fibromyalgia. Pain with inte rcourse is 10/10 that lasts for days afterwards. She describes it as a sharp cutting pain in the vagina. She ha d a hysterectomy last year for heavy menstrual bleeding and ovarian cysts; her current diagnosis is chronic abdominal wall pain. She says It started after I was injured in a car accident fourteen years ago; I was mainly hurt on my left sidearms and legs. She discusses abuse as a chil d saying [I was sexually abused as a child and an adult by family members. I finally told my mom about it-it helped. Its like it broke the cycle. Ive dealt with it; Im Ok.] Sh e made a comment implying the abuse she experienced may be a normal situation saying I thi nk most black women were tampered with as kids. In addition to sexual abuse, she reported exposure to humiliation and emotional abuse saying Ive also been teased a lot because of a scar on my arm from a burn. Mary describes coping with the pain in this manner: I pray, worry, try to walk it out; I take pain medication, I tell myself it doesnt hurt. She says he r husbands coping with her pain is terribleHe tries to prete nd Im not in pain. She says My husband gets angry because it interferes with our sexual rela tionship. In terms of her resp onse to the interference with intercourse she says I dont miss sex at allSe x is the most stressful thing in my life; I sometimes pick an argument with my husband to avoid it. I am noninteractive during it. Although Mary and her husband are cu rrently married, she noted that Weve been divorced and

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133 remarried because of this. Sexual ac tivity is important in a marriag e As for other aspects of her home life, Mary shared that Im the sole caregi ver for my father-in-law. My kids take care of their rooms. They dont really know whats going on with me, but they are concerned about me. And that Id like to have a corner of time to my self to relax and garden uninterrupted. As for the impact of pelvic pain on her wo rking life, Mary says that I st ill work despite it. Id stay at work even if I have to stay in a wheelchair. So cially, she says I do less. She is involved in church, saying that I carry on but Im anxious and depressed while Im doing things (at the church) and more easily frustrated. She says My whole life revolves ar ound this. She also says I am not getting better. Medicine that kno cks me out is all that helps the pain. I am hoping that some type of injection (trigger point injectio n) might help the pain. At the end of our first interview she said This has really helped; I talked about a lot of things I hadnt talked about that I realize I needed to talk about. Melanie Anderson Melanie is a 42 year old African Am erican, high school graduate. She is single and has never been married. She lives with a relative who is se ldom home because of her work schedule. Melanie has lived in the same home for about twelve years. She works at a local hospital. She is a non-smoker, no drinking ; attends church regular lyraised Baptist, now Pentecostal. She denies sexual a buse but does describe occasiona l physical abuse as child; she say no to experiences of emotional abuse/humili ation, however, she has battled overweight most of life and makes some remarks about comments often made to overweight people during our interviews. She comes from large family and descri bes close connections with frequent visits to extended family. She likes to exercise but talks a bout limits on her ability to exercise by the pain. She had surgery for painful uterin e fibroids several years ago and was better for years. Over the last year she began experiencing pain in the va gina, right lower abdomen and groin. This is the

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134 worst pain Ive ever experienced; its the wors t. Because of it you cant lie down, sit up, walk or have sex I feel great when Im not hurtingI was hurting very bad. Regarding the cause of the pain she tells me I dont know what is causi ng my pain. Dr. Ling says it is my muscles Its not normal to have pain there. She tells me that I pray to God it w ont last long and that I worry all the time ab out whether it will end. As for the effects at work, she says I have to climb stars at work, I do it, but it hurts a lot. I was working at the school caf eterialifting and walking; I re signed in 2002 because I had to stop lifting because of the pain. As for social ro les she says My pain didnt stop me from doing anything, (related to social roles) I just hurt-until this year when the vagina started. I was walking and doing strengthening exercises; I had to stop because of the painThe things I like to do with my leisure time are TV and walking; I like to watch soap operas; the pain has changed my walkingif I have it (the pain) I wont (walk). She is not currently in a relationship with a man, but says I would like to have sex again; I want something stab lealso a little afraid of the pain.(She notes that the last time she had interc ourse was three months prior to the interview; she experienced pain intensity of 10/10 with inte rcourse that lasted seve ral hours afterwards) In spite of the pain, she tells me that The most stressful thing in my lif e is being overweight; I want to lose weight; Ive never b een this big; I want to lose it! ...In 2002 I started walking real good, lots of dieting, then I took a fall and stopped it all She says that va ginal valium, recently added to her treatment, is helping the pain. Debbie Taylor. Debbie a woman in her early thirties ; she describes he r ethnicity as Southern American. She is single, never marri ed, and is currently not working because of pelvic pain. She is a college gra duate, trained in ministry (Presbyt erian) and was working in that field until recently. She lives alone part of the year, another part of the year one of her siblings

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135 lives with her while attending college in the Knoxville area. When as ked about a history of sexual abuse or assault, she described an episode of sexual harassment in the fourth grade that was ongoing by boys in her age group but sanctio ned by adults including a policeman. She described being groped and sexually teased on a regular basis while walking to school. She reflects that the police, parents and teachers who were aware of th e behavior should have been looking out for us. She has experienced painful periods since ag e eleven and had chronic pelvic pain for many years. The pain is in her lower abdom en, worse on the right and including the right buttock. She believes the cause of her pain is e ndometriosis, interstitial cystitis and muscle tension in the pelvic floor. She has been trea ted extensively, and recently had three laparoscopy procedures in a ten month period of time. She has also had a hysterectomy. Debbie has a lengthy history of treatment for irrita ble bowel disorder and other ga strointestinal symptoms. She expresses a great deal of frustration about the medical treatment for pelvic pain saying she has had to work hard to get good care and find out a lot on her own.. Debbie also expressed frustration about not being able to work and about the attitude her supe rvisor took toward her illness. She talked about the change in her wo rking conditions beginning to change her sense of herself. She describe d it this way: I dont want my life to be all about this and fo r the past two years my life has been going to doctors, therapists, hospitals, having tests a nd I want to be able to work again and participate in society and life and not just sit in doctor wa iting rooms and know which ones have the best magazines. The pain clinic has terrible magazinesI can tell people who has the best magazines and which ones look dirt y, who is going to make you wait an hour and a half, who will see you on time. I dont want to know that. I want to be, I worked really hard to get my education and to pursue a certain career path and right now I cant do that. She discussed the toll the condition has taken on her energy level which she says altered her social life as well as her wo rking life. The following is an excerpt about the impact on her social life:

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136 Its hard to make plans in advance because I dont know if I feel like doing. Ill make plans and have to cancel. I have friends th at understand and they know what Ive been going through and they are supportive and fine with that. I have other people that couldnt deal with that so I dont real ly have contact with them anym ore because they just, I find myself a lot of times saying Ill have to get cl oser to the date to let you know. When I was talking about I hate having instead of be ing a person who happens to have these conditions, its like the conditions are controllin g and thats been really hard too, I feel like theyre winning. I want to be somebody that people can count on and I dont feel like Ive been that. I dont do as many social type things as I used to or they are much more last minute types of things. Sue Davis .Sue is in her early thirties; she is ma rried, she has 3 childre n, and describes her ethnicity as American. She is white, non-Hisp anic; she has family members who grew up in the Middle East but does not iden tify with any ethnicity other than American. She lives with her husband and two of her children, one of her ch ildren lives with their father, who is not her husband. She says the one child living the father is a situation a judge d ecided. She was raised Catholic, but reports she is no longer a practic ing Catholic. She graduated from a community college with a computer and business degree, but had to quit her job as a bookkeeper because of the pain. She says I cant work 40 hours a week because of the pain; I am incapacitated by the pain. Her pelvic pain started after tubal liga tion surgery instigated by a premature birth and gynecological problems. She says she was advised by the doctors to have her tubes tied because the premature births were going to happen every time I had kids. She was in her early twenties at the time of the birth and surgery. Since that time she ha s experienced cramping, throbbing, stinging, hot pain in the primarily in the right lower quadrant of her abdomen that is at its worst during menses (8/10 pain intensity ) but also causes deep intercourse pain (7/10). Sue says that 3/10 would be an acceptable level of pain. She is currently avoiding intercourse because of the pain. She says however she manages all the hous ework and household responsibilities except for yard work which her husband does, because she says I like things done my way. In addition to pelvic pain, Sues has had kidney problems a nd two episodes she calls kidney failure. She tells

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137 me I want a hysterectomy but the doctor wont do it. Sue has an extensive history of childhood sexual abuse that started when she was eight year s old. She tells me in a matter of fact manner, ...that is why I quit eat ing in sixth and seventh grade. Su e has never been in counseling or psychotherapy. Sue says she is getting better since she started physical therapy a few weeks ago; she says she can tell shes better because she s taking fewer pain medications. She identifies pelvic pain as the most important problem in he r life. She is diagnosed with endometriosis and interstitial cystitis; she says she believes her pa in is caused by endometriosis, but she also says that she thinks she is to blame for her pain because I had my children. Janie Young Janie is a divorced woman in her midforties. She lives with her son, and occasionally with her ex-husband. She was raised protestant and describes her ethnicity as American. She works part-time as a travel agent; she says she did work full-time, but had to change her status because of pelvic pain. She says the change in her work status created financial hardship and that her ex-husband has helped he r substantially since that time despite their divorce. She began having vaginal and low back pa in five years ago that suddenly progressed to included severe rectal spasms that felt hot, throbbing and like I was sitting on a rock three years ago. The rectal pain extended to the la bia where she has a burning sensation and was worsened by sitting, which was a significant r eason for moving to part-time work. The pain is also worse with intercourse. She is diagnosed with a pudendal nerve entrapment and has had a surgical nerve release which she says improved the labia pain, but that all the pain continues at a level of 7/10. She says an acceptable level of pain would be 2/10. She has also been diagnosed with IBS, levator ani syndrome a nd constipation. Janie says she believes her pain is from the pudendal nerve entrapment; she says her family thinks it is because she is overstressed and that she has been told it is in your head and that it cant be that bad. She describes her ex-

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138 husbands reactions to her pain as he takes care of me and he gets angry. She says there has been a tremendous change in her home life becaus e of pelvic pain; she says I had company, I cooked, I did a lot of socializi ng in my home as well with a bridge group, all of that has changed. She says she used to travel, but no more because of the problems with sitting. Janie says she is getting better sin ce the surgery and with the contin uing treatment with medication and physical therapy. She says that pelvic pain is th e most important problem in her life. She is hopeful she will continue to get better. Janie deni es any history of abuse-emotional, physical or sexual at any age. Betty Arnold. Betty is in her mid-forties; she lives outside of Memphis in a small town where she and her family own a business. She describes her ethnicity as American and her religion as Baptist. She is married, lives with her husband of many years and near her grown children and grandchildren. Betty is a high school graduate who worked in the family business for several years now works as housewife and grandma. She has pe lvic pain in her right lower abdomen that has been there for about six months She had a similar pain about a year and half ago that was better after a gynecologic surgery to remove scar tissue and she says she expects the same thing is causing her pain now. She desc ribes the intensity of her pain as 5/10 with intercourse and 3/10 when her bladder is full but it bothers her most all of the time. She says the pain has made her slow down in her household responsibilities and in her interactions with family and friends. She say she is not as close to people as she was and that being afraid of being in pain keeps her home much of the time as sh e just doesnt feel like going places. Her husband is very concerned about her condition and accompanies her to the clinic due to the length of the drive to Memphis and her level of pain. Betty says pelvic pain is the most important problem in her life and that 2/10 would be an acceptable level of pain. Betty says she

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139 was molested as a child between the ages of six and twelve by a family member. She says she told her mother, but that not hing was done. Betty has been treated for depression with medication but has not had counseling or psychotherapy for any of her problems. When asked if the pain is getting better, she says definitely not that the pain is conti nuing to get heavier. Lisa Sanders. Lisa is in her early thir ties; describes her ethnicity as American. She says she was raised Baptist but is now Methodist. Lisa is married and lives with her husband and two young sons. She works fulltime as a child care cen ter director; she has a high school education and technical training in practic al nursing and emergency medicine. She has had pelvic pain for about a year and for six months bad. She has pa in with intercourse at the level of 5/10 that increases to 8/10 after intercourse and lasts for several days. She also experiences some burning vaginal pain after sex that she rates at 6/10 and says the pain interferes with her sleep every night. She says that pelvic pain is the most impor tant problem in her life and that a pain intensity of 3/10 would be acceptable. Lisa says she has ne ver experienced any type of abuse, emotional, sexual or physical. Lisa often works long hours while in significant amounts of pain. Her youngest child is two years old and in addition to pelvic pain sh e has had thyroid surgery and a hysterectomy since that childbirth. She says she copes with pain during her busy days of work, wife and mother responsibilities by taking deep breaths (I learned that from Oprah) and prescribed muscle relaxants. Lisa says she does all the housework, but that her husband helps with laundry and she helps him with yard, althou gh she says I cannot push the lawnmower, that is out of the question...I help bag the grass and mulch the flower beds. She says pelvic pain has not changed her work hours but her work activities; she cannot pick up kids or be as active as she would like. She says she often feels helpless at work because of those limitations. Lisa says I still go to church and ballgame s but I hurt all the time. She and her husband have intercourse

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140 less often because of the pain a nd that her husband feels helple ss and frustrated by her condition. He told her once ...weve got to get you fixed... Sh e says that her pain is not getting better and she is clueless as to what might help. She says that pelvic pain is the most important problem in her life and that 3/10 would be an acceptable level of pain. Narrative Themes Causality Wom ens descriptions of causality fell into the categories Dont Know/Not Sure; Medical Diagnosis (Gynecologic, Urologic, Gastrointestinal, Musculoskele tal, or Psychological), Medical Procedure, Accident/Injury, Abuse/Assault, Childbi rth and Life Stress. (T able 4-9) Examples from the narratives that highlight womens account s of each category of causes are presented in Appendix c. The most frequently articulated perceived cause of pelv ic pain was Unknown which was reported 19 times. (Table 4-9) So me women articulated more than one cause; however, women who reported not to know the cause did not report other cat egories. Of the 19 reports of Unknown 18 were from the Memphis sample. Neither the importance of knowing the cause nor impact of not knowing the cause we re specifically explored in the interviews, however, some women brought it up with prompting. One Memphis woman put it this way: M34 : Ive dealt with it (pelvic pain) for ove r a year and a half waiting for answers and this and that and it gets worse and worse. PK : Anything else you want to say about this w hole process before we look at your body? M34 : No, just waiting. A woman in Knoxville spoke about the importance to her of knowing the cause: K10 : You do think what is this ho rrible pain? I still want an answer about this swelling. I want to know why. And in response to my question about what was the worst part of the experience of chronic pelvic pain, one of the Memphis participants said:

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141 Not knowing; and the interrupted sleep-M37 Table 4-9 Perceived Cause of CPP by Self -Reported Ethnicity and Geographic Location Ethnicity Dont Know/ Not Sure Medical Diagnosis Medical Procedure Childbirth Pelvic Musculoskeletal Abuse/ Assault Injury/ Accident Life Stress African American Nashville 1 1 African American Memphis 6 1 2 2 1 2 1 European American Memphis 11 9 5 2 4 1 2 European American Knoxville 1 6 1 1 7 1 European American Winchester 1 Other 1 Total 19 18 8 5 12 3 2 3 A specific medical diagnosis was the second mo st frequent causalit y; it was reported 18 times. Commonly reported medical diagnoses include endometriosi s, interstitial cystitis and adhesions; also reported but less frequently we re ovarian cysts and bladder infections among others. Many women listed more than one biomedical diagnosis and included problems from more than one body system, consistent with their medical histories. Some women related the onset of their pain to an event (examples include accidents, surgery, childbirth, and rape) but did not perceive the event as the cause. For example, one woman in Memphis said: The pain started at age 14 when I was rape dWhat do I think is the cause of the pain? I have no idea.-M2

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142 Others perceived the event as the cause. A woman in Memphis explained how she thought the pain was caused by a rape, but that she had been told it was something else: I did think it was because of the rape; it starte d after I was raped when I was 18 years old. I bled for 2 days after I was raped. Ive been told it is because of ovarian cysts and scar tissue.-M4 Of events related as the cause of pain, medical procedures were the most frequently reported (reported 8 times); childbirth was the ne xt most frequent being reported 5 times; abuse/assault was reported 3 times and accide nts or other injuries reported twice. Three women, all in their fifties, and all white, related the cause as life stressors. Two of the three completed college, all three had worked or were working as either professionals or in management positions. Two of the women were from Memphis, both of whom described very specific work and family stressors and related spec ific parts of their pain to specific stressful events. The woman without a college education wa s on health related disa bility; she related the onset of her pain to stress at work, and recent symptoms to family stress. The following is an excerpt from our conversation: PKB : What do you think is causing your pain? M25 : Life-my husbands disability, my kids. I internalize a lot. PKB : Was there an event associat ed with onset of your pain? M25 : Yes, it was work; we were moved to a different office; I di dnt want to go The other woman from Memphis who related the cause of her symptoms related this scenario: Maybe its stress; Ive had a lot. My brother committed suicide; my husband lost his job; There were changes at work that have made work environment miserable for the last 4 years but Im now the primary breadwinner at home so I have to put up with it; our children are having problems th at are costing us moneyit go es on. The last episode of increased pain did start while I wa s at work a few months ago-M19

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143 I met with this woman several times over a cour se of a few weeks. During one of our last meetings she shared that she had initiated procedures to apply for disability due to the effect her job was having on the pain. The other woman in this category was not working full time when we interviewed, but was in school for a car eer change and working part time. She had experienced pelvic pain for many years and rela ted the following about the start of the pain: I thought it was either irritable bowel or I had a tumor in my stomach or cancer. I thought I had some cancers internally be cause there was constant pa in. I thought I had something seriously wrong with me. I think now, th at what was going on, considering what was going on with me at that time was, I think it was most likely stress...-W1 Productivity A resolve to carry out roles and responsibil ities at work and at home, including sexual roles and responsibilities, even while in pai n, emerged as a common theme among women in the study. The importance of productivity and a determinati on to continue to work as well as to carry out family obligations was clearly articula ted by many women in the study. Although many women described isolating themselves from soci al activities outside th e home, most of them related a strong desire to con tinue to work outside the home and to continue to uphold their household obligations to their families, including their sexual obligations to their husbands or partners. Most women described changes in the amount or the ways they were able to carry out work related and household responsibilities, as we ll as changes in the frequency and quality of sexual intimacy with their partners. They also described modifications to the time or responsibilities on th eir jobs; many described continuing to ca rry on responsibilities at work, at home and in bed while simultaneously e nduring very high leve ls of pain. The importance of productivity and/or work was expressed in extreme terms by some women. For example, one of the African Am erican women in Memphis stated that: I still work despite it; I go to work no matter; Id stay at work even if I had to stay in a wheelchair. M6

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144 One of the European American women in Mem phis actually described going to work in a wheelchair because of the pain: So the week before I actually got married they had to wheel me into the office (because of pain).-M16 One of the women from Knoxville described not being able to work as the most stressful thing in her life: PKB : the most stressful thing in your life on an average day? K4 : Probably not working is the th ing I feel like I cannot contro l; I used to beIm not as busy. Another of the women Knoxville simply stated the following: The biggest way pelvic pain has a ffected my life is my productivity. Two African American women in Memphi s described working while in pain: I have to climb stairs at work, I do it, but it hurts a lot (but I do it).-M22 I dont just dwell on it. It hur ts and I continue to do things Its alright one way or the otherI just keep going.-M48 A woman in Knoxville described how she we nt to work in pain until her husband intervened: I then packed myself in ice to be able to go to work the next day and thats when he (exhusband) said You got to quit it. You are suffering far too much.-K1 Many women discuss no longer bein g able to work or taking a di fferent type of job that is more accommodating to the modifications they ne ed to make to their schedules or physical activities because of the condition, however, most express frustration with the changes and limitations imposed by the illness indi cating a strong desire to be able to participate fully at work as well as at home. Some women expressed acceptance with less frustration, noting that adhering to limits lessens the pain, but for most women, the pain of limited productivity was as apparent as the physical pain in their pelvis in much of their dialogue. For example:

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145 M34 : Ive had to miss several meetings just beca use of the pain. Ive had to put a lot of things off on my vice president. My kids have had to go to my parents house a lot because of it. PK : And then you missed some work too. M34 : I missed a lot of work. PK : Did that put your job in jeopardy at all? M34 : It did not put it in jeopardy but it made me feel worse and worse just because I did not want to miss. Some comments provided insight as to why women chose to work both outside and inside the home despite pain follow: The fear of losing this house was greater than the pain I wa s going through. It was like work was the only value I had. Maybe thats all I know I m ean my sister and I have been working all our lives; I was 10 and she wa s 12 when my dad opened a store up so that is all we know. ..My dad owned a restaurant we would alternate da ys, we worked every other day with my father from the time we w ould get out of school to like 9 or 10oclock at night. So weve been working, you know... from the age of 10.-M7 Many women spoke about continuing do what need ed to be done at hom e but noted that it took longer to do most things because of the pain. As one woman put it; It limits what I can dolike washing a si nk full of dishes or standing will cause a problems; I have to put it off or not do it or modify what Im doing; it takes more time to do everything.-M21 Others talked about household responsibiliti es their husbands or other members of the household took over from them or assisted with because of their pain, however, despite modification, most of the women described a lot of physical activity at home while in pain. A Memphis woman (white), who works full time as a paraprofessional explained her attitude about continuing her household responsibilit ies while in pain this way: I can either take medicine or get it fixed or I can just shut up and go on. Im like every other woman you know. I get up at 4:45 and st art exercising. I get my house cleaning done before I come to work. I do all those things so I have to get up in the morning so thats why I think Im so tired at nigh t.Literally if I finish the k itchen at 8 oclock and sit down in the recliner to watch TV Im asleep at 8:05 and then Ill get up at 10 and go get in the

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146 bed and sleep to maybe until 12 or 1 then I wake up and not get up to go to the bathroom or anything just wake up and toss and turn fo r a few minutes then go back to sleep. Im usually back up about 2:30 or 3:00 th en my alarm goes off at 4:30.-M18 A retired woman (European American) in Memphis talked about fulfilling her obligations at home while in pain saying: I still do everything I always did, doing it all just means Ill have less ease; exercising is the only thing I had to stop because it hurt too badly. M24 The same woman who is 70 years old, and retired went on to say: M24 : I rode my riding lawnmower yesterday for 5 hours yesterday. PKB : Do you feel that pain while you are riding or is that afterwards? M24 : Well, yesterday it was when I was riding, then it went away, its not something thats going to kill me, it just hurts. Another tells me that her husband now takes ab out half the responsib ilities at home, but gives this account of her activ ity level, carried out while e xperiencing severe pelvic pain: I cook dinner when we are home at night and we cant eat out, I do the cooking and I will clean the kitchen and the housework and he alwa ys helps me with the laundry and my boys do tooI cannot push the lawn mower, thats just out of the question. But I do help like bag the grass. I did mulch my flower beds last week and I should have never done that. You know I do try, I would say I thi nk that to a halfway point-M10 Another describes getting help from young children when she is in pain: It seems to be the hardest thing is the hous e cleaning. My little boy helps me you know. If Im really bad or dont feel like, come and pu ll these out and bring th em in here and Ill fold them up. He helps me -K1 Some explanations for why they continue to work in the home despite pain include the following: It helps to keep myself going; I get panic attacks and if I keep going it is better. M17 I like to clean house. I like to put things in order. I like things in order.-M37 I dont want to be (limited in what I can do). Im the kind of person that will push myself to do what I want to do even if it means Im goi ng to pay for it later. I dont like being inactive. I like contributing. My boyfriend lives with me and we have a household.M38

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147 She went on to say: cleaning up and doing things, that are my wa y of coping and thats one of my outlets because it makes me feel productive. I can go at my own pace. If Im hurting I can rest. It doesnt require a lot of heavy strenuous exertion Its cathartic for me to take care of the home and also as a woman I know about the wo mens lib stuff and Im all for it except I really need a bra because my boobs are too big to not have one but I like its that nurturing side of me.-M38 One woman expressed her motivation to keep go ing despite pain to be based on a family example she was trying to avoid: Im not going to put my life on hold because Im in pain. I watched my mother do that I think and Im not going to do th at. There is too much livi ng to do then just waddle around, thats how I feel anyway... I just ha ve mountains I want to climb. M43 Others shared the following: Im recently back at work; Im doing it (worki ng) now because I need the income and it makes me feel worthwhile.-M38 It helps me if I keep myself going; I get pani c attacks; if I keep going it is better.-M17 Im currently not working because of it; I used to work 10-15 hours a day. Ive never not worked since I was 15; I didnt realize until I was off that you cant get well when you are so busyIts like my body says s top-you take care of yourself.-M19 This was the first time in my entire life th at I havent worked. I havent worked, not because I didnt want to, but because I coul dnt walk. I couldnt sit. It was horrible Im recently back at work; Im doing it (working) now because I need the income and it makes me feel worthwhile. M38 I worked in the law library as a librarian. I ha d to walk five floors qui ckly like you. I had to move fast, get there, I had to have patrons. I had to have a sharp mind and I had to know what I was doing because I was dealing with th e law. I was dealing with cases when the attorneys called and they needed things it had to be precise. I had to have a sharp mind and I had to be able to move around. I got to the point where I couldnt do those things anymore. I would get to work and didnt re member how I got there. I would do my days work and wouldnt remember what I did. I would read over things and itd be like oh girl you were really sharp in the mind. It just came out automatically but I wouldnt remember. I would read my work and it was like it was someone elses. M40 Sexuality Wom ens descriptions of their sexual behavior s, attitudes and beliefs were categorized under the theme of sexuality. Sexual intercourse was reported to be painful by most of the

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148 women in the study, some chose to abstain because of the pain; others described continuing to engage in intercourse despite th e pain, usually out of a desire to satisfy their partner. Some women reported desire to resume pain free interc ourse both for the relationship and for their own pleasure, others reported indi fference to sexual activity except for its role in maintaining a relationship with significant ot hers. Beliefs about sexuality and sexual activity were not investigated in depth, however, the perception that it was normal to be sexually abused as child and that it was normal for women to be less in terested in sex than men were both commonly reported. Sexual Behavior-Endure Pain or Abstain? It was funny because I h ave an ex-cousin, it was my first husbands cousin who was gynecologist, and he was one of those people th at I knew well enough that I could talk to about you know sexual problems or whatever. He said what you have is called dyspareunia and he said the only thing you can do is have your husband come in and well whack it off and youll be fine. Theres a j oke among doctors that its bette r to have dyspareunia than have no pareunia at all.-M55 Apparently not all women find dyspareunia is better than no pareunia, although many women continued sex even if it hur t, others take the opposite appro ach to not participate in sex without losing their marriages. One woman in Knoxville described pain during intercourse that as almost bad enough you dont want to keep on However, she apparently was keeping on. She shared the following details: The intercourse pain is not better yet, just the arousal pain. The arousal pain is probably about a 9 (out of 10). Its almost bad enough where you dont want to keep on. Its very bothersome. The pain during intercourse, it kind of eases off... Once I get past that initial arousal pain it kind of goes to about a 6. The pain afterwards I just feel really I guess sore. The level 6 kind of stays afterwards-K14 Another woman from the Knoxville clinic shared this: I have cramping after intercourse. Sometimes I have cramping during but thats just like if that happens its just stopped. Mainly I get more easily than I used to. Im just sore. Its like a 3 or 4 on the 10 point scale afterwards; it s nothing compared to the other pain I have

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149 but I wouldnt have sex again you know for ma ybe a day or two because of the soreness. During intercourse I can go to a 7 before I have to stop. K8 The reasons given for continuing to have sex despite pain largely focused on meeting the partners needs. A desire to be close to the part ner emotionally was also expressed as was a fear for the relationship if the sexual aspects of it did not continue. One woman reported losing a boyfriend when she explained that sex hurt and so she didnt like to do it ve ry frequently. Others described marriages that ended because of it. As one Memphis woman told me: Im fearful of not being able to pleasure him during sex-M17 Some women described avoidance strategies to deter the frequency of painful intercourse: Sex is the most stressful thing (in my life); I will pick an argument with my husband to avoid it; Im non-involved during sex because it hurts more if I move; if we go slowly with music it helps me relaxM6 One woman described giving up intercourse with little impact on her relationship with her husband telling me: At home my husband is very understanding; it (pelvic pain) li mited our physical intimacy 100%.-M39 Another relates changes in her relationship w ith her husband because of the lack of sex: We never have intercourse a lot, not as much as we shoul d but its not been a real issue but I think my husba nd and I would be a lot closer if we could have more relations...-K64 Another initially gave the impr ession that lack of sex is not a problem in her marital relationship saying her husband is an angel about the situation, but as we talked further, their mutual distress over the situation was rela ted. The exchange went as follows; K10 : My husband is wonderful. Hes an ange l. We havent had sex for two years. PK : How does he handle that? K10 : Horribly The last time I had sex it stayed at a 10 for two or three days. I want to be able to have sex with my husband again?

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150 Attitudes-Sex and Intimacy Very few wom en expressed a desire to resu me sexual activity because they personally enjoyed it and wished to resume it for their own pleasure or mutual pleasure. The following exchanges illustrate some of the common attitudes expressed by women in the study. M40 : Now it is much better. I dont go to bed with a yearning and a desire PK : Despite the fact it hurts to have intercour se youve always desire d it? The pain never affected your interest? M40 : No, I never liked intercourse. PK : You said you were going to bed with this yearning and desire. M40 : Because I wanted my husbands affection; I didnt want intercourse, I wanted his affection. M21 : Being a wife is the most stressful thing in my life because my husband hates the pain and then trying to be that wife thats fantastic and cuddle and all that stuff that affects (me) because I dont want him touching me but I try bit I hate it (sex). With pain I hate it moreI wish if I didnt have the pain. I w ould be able to do it e nough just to please him but I wouldnt care if I didnt do it The pain makes me not want to have sex; pelvic pain stopped me from being able to take care of my husband. Attitudes-Abuse and Pain are Normal? I thought all girls were m e ssed with, werent you?-M8 Although none of the women with a history of ab use or assault reacted neutral to it, they all had negative responses, and expressed a variety of negative emotions and reactions. However, many described it as a relatively normal part of life, in some cases, a normal part of being a child. Abuse and assault perpetrated by authority figures (family or community) as well as abuse or assault that was repeated or continual or that they also witn essed others experience contributed to some perceptions of normalcy. ...That whole atmosphere was sexual, part of it I think is normal curiosity that starts around that time but it went beyond that. (Discussing expe riences at ten years old) Your daughter better tell you if the boys are bothering her. It is some thing I just thought about recently because I was watching just the other day on a show they were talking about kids who had been bullied and harassed and stuff and about how if these were actions that were taking

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151 place when we were adults they would be ha rassment. I thought this kid that came up and was always putting his hands on me, grabbing me from behind, saying things. Im like you know, because we were in the fourth grade it was kids being kids... K6 When I was a kid there was some pervert who would flash us on the way to school and the policemen knew him and knew where it happened and all this; I forgot about him. We had all kinds of names for him. There were five of us and we all walked to school at the same time K13 When I was in high school I guess I was deve loped pretty well so I had old men all the time try to get me to go out to dinner with them try to get me to spe nd the night in a hotel. This was in a farming community in the MidWest... It happened probably about 20 times during the time I was in high school that I wa s kind of like what am I doing wrong. I think it was Id run a lot of errands for my mom and so Id be out by myself instead of with somebody so I think that may have been. Thats the closest Ive come to being scared. One time some man put his hand on his arm to try to lead me somewhere and I jerked it and said do not ever do that again and walked off. I was kind of shaken. Other than that fortunately it didnt go any further. K16 ...Not rapes, just forcing sexual act; this guy got kicked off campus actually. It was my freshman year. He was harassing me afterwards like stalking me kind of and my RA, I just turned 18, RA figured out what was going on and took me through the whole process. I never had to see him again. Years later I found out that all of this one group of people this guy was with them and everyone there knew-K8 I was molested as a child. I thi nk the first time it happened I was about five that I recall. It was actually by my older brother. Hes three year s older than I am. It started out as like a playing doctor type of a thing and it kind of progressed to you know; its come out in later years that he himself might have been raped. He told his fi rst wife that he was actually raped by an uncle who we know is a pedophile. To make a long story short he would play games As soon as I got a little bit older, I think I was about nine I would say no Im not going to do that anymore. He left me alone but then he went afte r my younger sister who is five years younger and we found out that sh e had been very molested and maybe even raped for ten years by him but she would never tell. -M51 My dad was pretty abusive, physically and just always him always f eeling us and stuff; I was seven, eight, nine, probably to twelve years old then I lived with my grandparents My mom didnt know what he was doing he was abusive to her.-K15 I think most black women were tampered with as kids.-M6 Fragmentation Fragm entation was a theme expected to be reflecte d in descriptions of health care that also extended into descriptions of fragmented se lves. Many women describe d alienation from their bodies, their emotions as well as from their friends and families and in some cases even from

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152 their sense of self as a result of or part of the illness expe rience with chroni c pelvic pain. Fragmented health care was reflected in stories of complex treatment regimes and consultations with a wide array of practitioners that enco mpassed numerous medical diagnoses and multiple medical procedures, in many cases, over several years time. Extensive medical care that was fragmented along the lines of medical specialties was described by most women in the study. One woman even discussed her observation of the mind-body split informing the health care she received. She complained about th e inability of the practitioners she had seen to connect the trauma of abuse to her physical pain saying: They (health care professionals) did not unders tand (the relationship between abuse and my pain). They were saying that it was in my mind-that my illness was psychosomatic. They were saying depression I had was border line manic depressive and all these things. When I realized that it wasnt my fault that I didnt do anything to make that happen to me then I didnt have those problems anymore.-M40 Other stories of fragmented care were more about lengthy experiences with a variety of specialized practitioners than about mind-body disc onnections. For example: Well it certainly helped me since Ive seen the new doctor the past three years. He ended up doing two surgeries which after the first one well that was actually my second one helped me and then I got worse and then he found some more endometriosis in there and took it out. That has certainly helped seeing him and learning things that help make it better like swimming and Pilates and noninvasive types of things...within that time I had like four cystoscopies on my bladder. Then I had gallbladder removal and three weeks later I had an ovary remnant and they put me back in and that was a four hour surgery. They had to remove some of my colon as a part of the ovary remnant. That was in November, a couple days before Thanksgiving. Ive had about ten to eleven procedures since January 15 of last year.-M32 Comments from women describing the supportive nature of thei r health care encounters, including participation in the study include the following: Im more relaxed now (that Ive ha d) a chance to talk about it a get it out; it helps to have a woman to talk about it to; helps to get it out M7 This has really helped; I talked about a lot of things I hadnt talked about that I realize I needed to talk about.-M6

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153 My social world pretty much consists of my coming to the doctors office. When I leave the doctors office because Im out Ill go by my moms or one friends. The reason that I do that because when I sit down I may go to sleep and sleep four hours and I cant go to other peoples houses and do that so I was not going anywhere. Of c ourse I just started driving myself in these last few months.-M40 I feel better seeing you. I have felt so hopeless and even sometim es not exactly suicidal but to the point where if I have to be like this th e rest of my life it would be okay if I just dont wake up. I have my daughter and I think well Ive just got to go on. My mammogram is a year and a half late and I dont even care. My cholesterol is very high and she gave me medication and I wont take it. The last time I took the Lipitor it near ly killed me. It put me in an ulcerative colitis bout that last ed three months. I was literally home bound on steroids and I couldnt leave the bathroom. I m terrified that another drug will do the same thing. I think Ive got enough going on right now to have to deal with Im surprised I havent had a flare up with all the Motrin and stuff Ive been on. My colonoscopy is overdue. I just cant think a bout it. I dont care about it. This just consumes me.-M51 Although the narrative accounts de scribed health care that wa s often complex and carried out by a variety of practitioners in several different locations, when the women told of the experiences, they told them as one story; one very long and complex story. Underlying the description of fragmented health care delivery was the story of one person who received that very complicated care, perceiving all of the appointments and procedures as one combined experience rather than as many separate experi ences, which was the mode of their delivery. One of the difficulties or pitfalls of providing health care for pelvic pain by a team of providers in various clinics is establishing and maintaining effective communication between practitioners; clarity, frequency and completene ss of communication between providers can be challenging to attain and maintain those situations. In addition to the complications of effective communication across the health care team, patient practitioner communication is also frequently imperfect For example it was obvious in several conversations that participants in the study often did not share all their symptoms with the providers they were seeing for pelvic pain. One exchange that illustrates that went as follows: M32 : Yesterday I just took a bite of a wheat sa ndwich with cheese on it and got severely nauseous. Ive been nauseous really bad for two days now.

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154 PKB : Youve actually had vomiting too. M32 : Oh yeah. PKB : Does Dr. Ling know about that? (The do ctor now treating her for endometriosis) M32 : Im not sure. The vomiting is not as freq uent as the nausea and diarrhea. That is more predominant. It can be occasionally on the vomiting I would say its every month. The Zofran they got me on has helped as far as the vomiting. The nausea I took three yesterday, not at the same time but I had three Zofran yesterday and it still didnt do much. In that example, the practitione r is receiving a fragmented rath er than a complete view of the womans symptoms. Fragmentation was also reflected in womens description of th eir relationship to their pain and their bodies. Many women descri be the pain as something outsi de themselves, for example: Its not there all the time like it used to be like every day, all day. When it does come every often I can hardly move. Lately it is though but not before I guess. I started not trying to take anything. Thats why I like it not to be there.-M27 Its like my body says stop-you take care of yourself.-M19 It (the pain) does whatever it wants to!-M23 Fragmentation also appeared in coping strate gies described by many women, for example, the following comments were made while discussi ng having painful intercourse for 17 years of marriage and painful urination si nce a childhood bladder infection: Being still and closing my eyes and trying to mediate, trying to do mind over matter before I resort to medicationCause I hate f eeling like Im a walking drugstore-M21 I might have ignored it more than I should have. M27 In many cases social isolation and alienation from friends and family were described. I find like I dont want to go out to the movies as much to be with people, Im kind of right now not hibernating but kind of recharging myself. I do that as kind of a safe retreat. If I can just relax and be okay then, I guess Im finding myself doing less of that now. Im working on it; its not like I wont go but if my husband says do you want to do something tonight? Im like no. I just like wa nt to stay home tonight. Hes like sure and we do. If he really wants to go somewhere Ill go with him. K16

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155 I thought I was going to die, and I was really ready, not afraid, and just ready. It was in the beginning when I was in the house and nobody unde rstood. I was in the dark. My husband would come home and I couldnt make him understand. They dilated my eyes and I couldnt see and cant stand light. I couldnt read and wa tch TV. I couldnt work.-K10 In some cases it appears the women become separated from themselves as well as lack of social wholeness becomes the standard state for daily functioning. Separation from emotions is one example: Im not a crier so for me to cry its a big deal, like today; but it did feel better. K10 Fragmented self as a strategy for self-care was related in the following manner by one of the women from Knoxville: To me taking care of myself is getting up in the morning and making myself look good. I have an attitude where if I make myself look good then yall think I feel good. That to me is taking care of myself, goi ng in my room, closing my door, doing stuff by myself that kind of thing K14

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156 CHAPTER 5 DISCUSSION Social and Demographic Characteristics Ethnicity. Many m ore African American women were expected to participate in this study than were recruited; this was particularly tr ue for the Memphis clinic. This expectation was based in part on the demographics of Memphis, as well as on the perceptions of the Memphis clinic staff regarding the number of African American women in their care for chronic pelvic pain (CPP). The expectation was th at at least 50% of the women recruited in Memphis would be African American rather than the 20% who were actually recruited. The clinic that served as the study site in Memphis was a newly established private medical office located in suburban East Me mphis. Although the practice site was newly established, it was operated by physicians with ov er twenty years of practice and research experience in Memphis with women with chronic pe lvic pain. (King et al 1986; King et al 1991; Myers et al 1991; Ling 1993) Until a few weeks prior to data collection for this study, the physicians practiced through universit y based clinics in both the eastern suburban part of the city where the study site was located as well in th e medical center in downtown Memphis. At the time of the study they no longer had a clinical office in downtown Memphi s. The lack of access to downtown Memphis likely contributed to the relatively low numbers of African American encountered during the study timetable compared to expectations from the previous patient population served by those particular physicians. Th e residential population in East Memphis is predominantly middle to upper income as well as predominately white, whereas the residential areas surrounding downtown are predominately lower income and black and/or African American. The clinical records kept in Memphi s do not include racial or ethnic information, so the expectations of the clinic staff that larger numbers of African American women would seek

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157 care during the study timetable were not statistically ba sed, but rather on the perceptions of the clinicians and staff about the racial mix of the patient population, which calls into question the realistic nature of those projections. In Nashville, two African American wome n were recruited; however, other African American women who were approached in Nashv ille declined to participate. The two primary attempts to recruit participants in Nashville occurred in group se ttings where a presentation was made on pelvic pain followed by invitation to pa rticipate in the study; both of those sessions were attended by several African American women. During one of the meetings in Nashville, questions were raised by one woman as to why th ere was a specific interest in recruiting African Americans to the study. She was skeptical about th e motivation to consider race and ethnicity when studying women with pelvic pain. Mistrust of biomed icine is common among African Americans. (Belgrave 1992; Davis 1981; Dula 1994; hooks 1989; Jazieh and Buncher 2002; Kilgus, Pumariega and Cuffe 1995) In contrast to the recruitment experience in Nashville, all the African American women in Memphis who were approached about the study ag reed to participate. The nature of the relationship the African American women in Memphis had with th eir physician lik ely reconciled any concerns, fostering a positive attitude toward the project. Study participants often articulated trust and confidence in the practitioners operating the clinical sites in Memphis and Knoxville. Comments such as the following were common: Recruiting participants from clinical sites in the downtown area of Memphis would likely not only have increased the percentage of Afri can American women encountered, but also the percentage of women who had not completed high school and/ or were not employed. Although it was unintentional, the study sample was biased aw ay from recruiting women of the lowest SES

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158 at all sites. A clinical presence in the downtown area of Memphis could have alleviated this as well as a clinical presence in Nashville at loca tions known to serve lower income women such as those at Meharry Universitys medical school and those at Nashville General Hospital both of which are located in resi dential areas predominately popu lated by lower income African Americans. The church that was utilized for recru itment in Nashville is located in that area of Nashville, however, as previously mentioned, th e recruitment method was a one shot attempt and relationships, well known in anthropological research for their impor tance attaining participants, were not established with the women encount ered there (Agar 1980; Bernard 1994). Working through churches makes sense as a strategy for recruiting both more African American women and lower income women to future studies that could be utilize d in all geographic areas. The church community is often utilized as an access point for health and research initiatives aimed at African Americans and church attend ance is often associated with be tter health; for example, in a study of church attendance and health practice re lated to breast health screenings, Aaron (2003) found church attendance was not only associated with increased likelihood of positive health care practices, including health care seeking, but that it was particul arly linked to better health practice, especially an increase in the number of doctor visits, for th e less healthy and the uninsured. Establishing relationships within a church community could not only facilitate recruitment of a non-clinical sample, but would also provide a means of recruiting both men and women with CPP who may or may not s eek health care for their condition. Transportation, clinic schedules and locations are all well known barriers to accessing health care for lower income and minority women. (Lieberman, Stoller, Burg 1997) During the course of this study only one African American woman was inte rviewed who previously made appointments with the Memphis physicians at the downtown clinic and followed him to his new

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159 practice. She was employed and owned a car. Fina ncial assistance for transportation was offered to study participants to c over cost of travel to appointments for interviews. Only one participant, one of the African American women in Memphis, requested assistance. In addition to the issues of local demographi cs and clinic access, differences in care seeking behaviors may partly explain the sma ller percentage of Afri can American women. (Aaron, Levin, Burstin 2003; Belgrave 1992; Dignam 2000; Miller et al 1996 ; Mitchell 2002 ; Pikler and Winterowd 2003). Afri can American women are known to be less likely to ask for help, perceiving themselves as strong and capab le of enduring pain and physical hardship. (Banks and Malone 2005; Davis 1981; Lieb erman, Probart, Schoenberg 2003; Pikler and Winterword 2003) The experiences of slavery and on going racial discrimination contribute to attitudes of self-reliance, mistrust and possibly an increased desire for control of ones body as well as to disparities in physical health and health care. (Collins, David, Handler, Wall and Andes 2004;Davis 1981; hooks 1989; Lackland et al 2004; Lieberman, Probart, Schoenberg 2003) Abuse and Ethnicity. The ethnic variation in abuse rate s was not statistically significant; however, the difference was notable, (69.2% am ong African Americans compared to 57.1% of European American women), which combined with the strength of associations between African American ethnicity and risk factors for abuse support further examina tion of racial/ethnic variation in abuse/assault histor y in larger samples of women with CPP. Explanations for the statistically significant et hnic variation in pain intensity w ith sex found in this study could be related to differences in the characteristics of sexual assault such as those reported by Golding (1996) however, with the excep tion of noting whether the age at the time of abuse/assault was thirteen or earlier or fourteen or older, data regarding the circumstances of sexual abuse/ assault

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160 were not collected in consistent detail in this study. Many women who part icipated in this study provided lengthy and detailed accounts of abusive or assaultive experiences,; others chose not to discuss it at all. I did not attempt to retrieve comparative data on circumstances of assault due due to the variations in both the quantity and qu ality of information on the topic acquired during the interviews. Future work that provides more focused ethnogra phic exploration of differences in pelvic pain variables, sexual behaviors and attitudes as well as e xperiences of abuse and assault among ethnically diverse women are needed to clarify the relevance of these interrelated social characteristics and experiences to the development and treatment of CPP. African American women historically experienced more sexual objectification than their white counterparts (hooks 1989); bell hooks states that black women with a history of physical abuse frequently have a lack of interest in sex, which she explains as based in a lack of trust. She discusses the development of atti tudes of self-reliance and enduring in order to cope as a child with racism and abuse, but goes on to note that What may have worked well as a child doesnt work so well as an adult referring to African American womens difficulty in developing a positive attitude towards sex. African American women are more likely to have experienced abuse and may have more intense need for body control than do white women, influencing both their attitudes toward sexuality and to medical intervention. Age. The mean age of the women in the study samp le (40.7 years) is consistent with other reports that CPP peaks at midlife. (Howard 2000a ; Latthe et al 2006; Steege 1998) The mean age for women in the study who were on health related work disability was of interest, being slightly below the study mean age at 37.1. Only three women in the study sample related the cause their pelvic pain to be life stresses a nd all three of those women, notably, were in their 50s. In addition, all three were also either in the process of changing their work conditions or

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161 had already made a change to their work conditions because of pain and stress. It appears that women past mid-life may recognize the role of stress in CPP when they reflect back on the experience, whereas, in the earlie r years while actively engaged in diagnosis and cure seeking, the role of life stress may not be clear. The one woman in the study from Virginia, who was one of the women who identified life stress as a cause of CPP explai ned it this way: ...I thought it was either irritable bowel or some cancers internally because there was constant pain. I thought I had something se riously wrong with me. I think now, what with what was going on (in my life) at that ti me, I think it was most likely stress.-W1 Whereas many women in the study emphasized the importance of working and described enduring severe pain while working long hours outside the home, these older women were choosing to limit the time spent at work. Maturit y, the greater self-confidence that often comes with age for women as well as higher levels of personal economic resources accumulated from earlier work could all factor in to the change in attitude towa rd work noted in this group of women who were now over 50 years old. African American were sli ghtly younger (mean age 39.07) th an the European American women (mean age 40.39), a difference that was not statistically significant but of interest nonetheless. Considered the small size of the sample, it may be this difference would emerge with a higher level of signifi cance in a large sample. The youn ger age of African American women could possibly be e xplained by the fact that cyclic (menst rual cycle) pelvic pain is more common among both younger women (age less than 30 years) and African American women.(Latthe et al 2006) Many women in this study had dysmenorrhea and non-cyclic pelvic pain as well as episodic dyspa reunia (intercourse pain); relati onships between the subtypes of CPP and racial, ethnic and sociode mographic variables were not a focus of this study, however, a

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162 research design that facilitates that type of analysis could provide insightful information from future studies. Younger women from minority gr oups, including African Amer icans, are more likely to experience both sexual and physical assault, whic h increases their risk of developing pelvic inflammatory disease (PID) a risk factor for all types of CPP. Exposure to abuse and assault as a precursor to PID increases th e likelihood of minority women developing CPP at earlier ages (Champion et al 2005; Golding 1996; Walker et al 1998). Early age exposure to violence has been related to changes in blood pressure in minority teens (Ewart, Jorgensen, Schroder, Suchday, and Sherwood 2004); systemic hypertension was identified as a co rrelate of uterine fibroids in black women many years ago (R ubin and Ford 1974). Ut erine fibroids, or leiomyomata, are somatic pathologic conditi ons commonly occurring in women with CPP; hypertension affects the highly vascularized ut erine lining, resulting in end-organ remodeling that manifests as fibroids and possibly as e ndometriosis. This study by design addressed only adult women over 18 years of age; considering th e implications from the literature that the precursors of CPP begin at earlie r ages, the inclusion of adoles cents and younger girls in future studies, particularly those aimed at promo ting prevention and/or or understanding the developmental course of CPP and suscepti bility to the condition seems warranted. Marital Status. Marital or relationship strife, particularly over sex, was described by many of the women interviewed. Many women expressed distress that their family members (spouse, and/or children) had to take on more domestic responsibilities because of the limits on their function from CPP. Those who were divorced ofte n cited the pain experience, and particularly sexual problems related to the pain, as contributing factors to the br eak up of the marriage. African American women were more likely to be divorced than their white counterparts, with 4

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163 of the 14 African American women (just under 30%) were divorced; whereas only two of the 45 Euro women (less than 5%) were divorced. It appears that am ong women in this study sample, African American women who were married were more likely to divorce during the experience of CPP than were the European Am erican women. More detailed exploration of marital relationships than was carried out in th is study is needed to clarify and explain the influences between marriage, divorce and C PP in women from multi-ethnic background. Being married was inversely related to health related disability among women in this study, with seven of the ten women on disability being married; one of the women on disability was divorced and two identifie d their marital status as single. It may be that the financial security associated with marriage increa ses the likelihood a woman will pursu e disability status; or it could be that pelvic pain is complicated by th e marital relationship, exa cerbating the effects of the condition. Some studies indi cate marriage increas es the risk for CPP with lack of a supportive spouse (which in many cases may in fact be an oppressive spous e) being a significant variable in sexual dysfunction (Randolph and Re ddy 2006) as well as in depression in women. (Baker Miller 1986; Doyal 1995; Ussher 1991; 2001) According to Engels, monogamous marriage transformed the nuclear family into th e basic economic unit of society with women and children dependent on an individual man, facilitating the social oppression of women (Humphries 1987; Leacock 1972). From that perspec tive, the only way for women to be liberated is to participate in social pr oduction, which further deteriorates the position of women by moving domestic work to a private service assigned to women of lower class (Marx 1906). Marital relationships during the pelvic pain experience need further ex ploration; perhaps beginning by examining dialogue from women w ith CPP about the nature of th eir marital relationships and how they see those relationships effec ting and being effected by their pain.

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164 CPP as a life problem Although not statistic ally significant, th ere was a notable difference in the percent of Af rican American women (64.3%) compared to European American women (51.2%) who ranked CPP as the number one probl em in their life. (Table 4-9) Structured follow up questioning aimed at understanding ho w women decide on the rank of their life problems among ethnically diverse women with CPP could shed light on the reasons for this variation as well as any relevance it may have to either susceptibilit y to the condition or recovery from it. Work and Productivity Work was the only value I had--M7 The m ajority of the women in the study (34 of 59) were employed (31 full time and three part-time); approximately 60% of both African American and European American women were working full time. None of the African American women who worked held part-time jobs, which may be related to SES and household need for income. Ten women were on health related disability eight of whom are white Euro-Americans and two are African American. The women on disability represented just fe wer than 20% of all white women in the study and approximately 12% of the African American women. Seven of th e women on disability were married; two were single, both white; and the one divorced woman is African American. The mean age for the women on disability was 37.1, slightly below the study sample mean age. The conversations in this study made it clear that most women with C PP strongly desire to co ntinue to work and do so. The reasons why they work and the influence of marital and family relationships, SES, on the decisions about working are pertinent for furthe r study. Asking a sample of women from a range of with CPP about their reasons for working per tinent to the continued study of CPP in women. Most women in this study insist that pelvic pain will not stop them from working, especially not working outside the home. Women talked, sometimes at length and often

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165 passionately, about the importance of being able to work; they spoke of their willingness to tolerate pain on the job in order to keep wo rking. The stereotypical perspective biomedical practitioners have of patients with chronic pain syndromes is that they do not want to work and are seeking care in part to seek a way out of work. In opposition to that expectation, women in this study expressed a commitment to maintain th eir status in the work force was extreme in some cases, and the majority of them were in fact working. Although the motivation not to give up or give in can be interpreted as a positive coping strategy, it may in f act be detrimental to health and recovery as was point ed out by one of the study particip ants. The question is raised as to why women with CPP are willing to work so hard while in so much pain? What does staying productive, either outside or inside the home, provide that women are willing to physically suffer to maintain it? A Mexican woman in th e study noted that througho ut her life work was the only value I had; she describe d a variety of social difficulti es, and an almost equal number of somatic complaints all of which lim ited her in her domestic responsibilities. Emily Martin (1992) suggests from that the pain associated with premenstrual syndrome is womens embodied resistance to sexist oppr ession, emphasizing the oppressed position of women and domestic work in th e process of social production. Women in this study also spoke of oppression with similar commentary on the monotony of domestic work and of sexist workplace practices and attitudes. While descri bing her around the clock schedule of housework and work outside the home one woman in Me mphis said Im like every woman you know (M19) However, the women of this study spoke less about boring and monotonous jobs and more about personal violence, assault, and physi cal and/or emotional harm. Many of them lived the horrific realities of sexual abuse and violence, some more cognizant of the ongoing influence of those experiences on their mental and physical health than others. One African American

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166 woman in Memphis said, The doctors dont unders tand that all my problems are related to the rape Women often expressed resolve to establish and maintain their status as valued workers. For some, it seemed the value gained from work ing was worth enduring pain. Perhaps the most telling insight came from the Mexican-American wo man in her twenties who as previously noted commented that ...work was the only value I had. The need to continue to feel normal is suggested as an explanation for women with CPP to maintain high levels of function. (Grace and Zondervan 2006) Women with CPP clearly do no t feel normal although pelvic pain is one sense normalized as something that women get(Grace and MacBride-Stewart 2007); the normalcy of the condition, particular ly in the absence of a clear cut, organic or real medical diagnosis could contribute to womans need to continue to appear normal. The determination expressed by many women in this study to continue to work and their ability to do so despite severe pain, not only raises questions about why they want to work despite pain, but also about how they do it. Con tinuing to function while in pain is difficult at best. It seems that staying productive, especia lly outside the home, as well fulfilling sexual obligations to spouses and signifi cant others provides women with a social or emotional return so valuable that they are willing to physically suffer to maintain it. One possible explanation lies within the psychological profile of victims of abuse and viol ence. Trait dissociation, common among abuse victims (Hall 2003) an d considered maladaptive in biomedicine. (Castillo 1997) Perhaps dissociation contributes to the ability of women with CPP to remain highly functioning despite extreme pain. I approached this study with th e expectation that work woul d factor significantly into womens experiences with CPP. I expected that women would describe multiple social roles (Spurlock 1995) that they desired relief from in order to relax and heal. In fact, I framed the

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167 initial questions to lead to discussions about overlapping and burdensome daily routines. I expected to hear themes of resi stance to the many social obliga tions and perhaps see pain as a means for some women to escape the least desirabl e of those obligations. In some cases, that theme did emerge. Most notably in two mid-life women who clearly stated their desire to leave unhappy work situations drawing cl ear connections between the onsets or worsening of pain and the work related problems. The ma jority of women, however, clearly related a strong desire to stay on the job both at home and at work, despite pain. When participants described the effects of C PP on their ability to carry out their daily responsibilities, most were much more likely to describe modifying their work at home than modifying their work outside th e home. That aspect of the productivity theme, continuing to function at work outside the home, is consiste nt with other reports on work and women with CPP. (Grace and Zondervan 2006) Women may be more limited in their ability to negotiate changes in roles and responsibilities outside th e home than in the home. Although variations certainly exist between family units, women may be more willing to express their social distress in the home, however, the reasons women with CPP continue to work and how they decide not to work are topics pertinent for continued study of women with CPP. The division of labor (DOL) typical of patriarch societies is such that women typically have less access and control over financial resources than men (Burn 2000; C hodrow 1999; Leacock 1972; Margolis 1984). When access to wealth is limited, perceptions of lack of power, control as well as a real and perceived lack of independence and value result (Burn 2000; Durkheim 1984; Leacock 1972; Margolis 1984; Marx 1906). Capitalistic societies place valu es on people based on their ability to produce wealth. People whose work is primarily dom estic and not directly wealth-producing are considered low on the social value and power scale (Burn 2000; Casti llo 2997; Martin 2001;

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168 Margolis 1984; Marx 1906). Domestic work is most often carried out by women and girls across cultures and so by association with domesticity, women and girls of ten find themselves in a place of low social value. A particularly low value is placed on women directly involved in domestic occupations, and this low value can be associated with even lower status if the female domestic worker is also a member of a minority ethnic gr oup. Low social value is reflected in the low wages and minimal benefits, such as lack of hea lth insurance as a benefit for domestic workers. The same type of value system is often a pplied in the home when members of a family consciously or unconsciously evaluate each other s contributions, usually giving heavier weight to the contributions that produce economic weal th than to those associated with domestic functions. (Doyal 995) It is likely that women who contribute substantially to the household income are less likely to modify their work schedules than women w ho produce discretionary income for the household. Other social and psychologi cal factors likely factor in as well; further contextual examination of the decisions women with CPP make about work are needed to fully understand the meaning and clinical relevance of their productivity in a nd out of the home. Sex and Sexuality The slightly higher m ean level of pain inte nsity among women without a history of sexual or physical abuse or assault, compared to that of women with a history of sexual or physical abuse or assault found was not statistically signif icant, however, the weig ht of the statistical analysis was limited due to the small sample size, in particular the small number of African American participants. Further examination of ethnic differences in pain variables among women with CPP in studies that include larger numbers of ethnically diverse women is warranted. The non significant differences in pain variables be tween abused and non-abused women in the study also warrant further study as the relationship betw een abuse and clinical ma nifestation of pelvic pain is not yet well understood. Comparing pain intensity with sex between women who are

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169 premenopausal and those who are post-menopausal is another logical next step with this data set or in future studies as painful intercourse is known to be more common among post-menopausal women with CPP; however, pain intensity was not examined between those groups for this report. Further examination of associations between pain intensity and characteristics of abuse/assault among the participan ts in this study compared with women without an abuse history and in future studies may shed light on relationships between abuse/assault and the clinical course and presentation of CPP. Sexual abuse The majority of the women in the study had a history of sexual abuse (60%). The positive association between sexual a buse and CPP is well established, and plausible theories exist to support the etiol ogic nature of abuse for CPP. A biological causality from abuse to CPP is suggested by Champion et al (2005) in their report on risk of PID in a sample of abused minority adolescents. Ot hers suggest that re lationships between abuse and development of chronic pain syndromes may be related to the emergence of malada ptive coping skills in response to abuse. (Toomey et al 1995) From the perspective of anthropology and feminist science, CPP is likely an expression of social distress, the embodiment of pain caused by abusive experiences (Kleinman 1988a; 1988b; Kleinman 1992; Kleinman, Das and Locke 1997). The stories shared by the women in this study reveal distress about past traumatic, abusive, and/ or threatening experiences. Comparative examinati on of the social and psychological aspects of CPP from the perspective of the abused wo men who get it (Grace and MacBride-Stewart 2007a) would help to enhance our understanding of sus ceptibility to CPP as well as the links between its clinical course and th e various factors that contribute to it. Further explorations of the belief that sexual abuse and sexual and reproductive pain are nor mal may provide insight into care seeking behavior, sexual behavior, coping stra tegies and self-care st rategies used by women

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170 and girls with CPP. Early intervention for pelvic pain that targets abused and assaulted women as well as those already diagnosed with an STD or PID could prev ent the development of CPP; understanding womens thinking ab out their symptoms would be key to the development of effective prevention program. Causality and Diagnosis What do I think causes it? its a little bit of a mysteryto me and the doctors... K2 One woman described the process of health care seeking for CPP as waiting to know acquiring an explanation for the pain is important in the biomedical process to determine the course of treatment, since treatment is diagnosis-driven for the most part. Many women indicated that knowing what is causing the problem would have a therapeutic benefit, and for some, it seemed to be the most they hoped for at this point as resolution of the symptoms did not seem possible. When asked to define an acceptable level of pain is, many women gave values above zero. Similar to the New Zealander wo men with CPP (Grace 1995; Grace and MacBrideStewart 2007) both black African American a nd white-Hispanic and white-non-Hispanic women in this study were focused on gaining a clear, singular biological explanation their pain. The disease model of catching pelvic pain as you might catch a cold was verbalized by one participant as she tried to make sense of the diagnostic inform ation she had been given. Using biocultural models to direct th e development of both patient and clinician education programs and materials in a manner that is accurate and meaningful will be challenging, but has the potential for improving both diagnostic processes as well as understanding of pelvic pain as both an illness and a medical condition. Biomedical diagnostic profile of the study partic ipants revealed complex histories, with the review of systems (ROS) positiv e in almost all body systems on almost all participates. The majority of participants had multiple diagnos es across many body systems; some of the women

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171 were beginning to question the me dial diagnostic labels similar to the women in Martins (1992) study of childbirth who began to question info rmation they were provided, however, all the women in this study were continuing to seek the cau se as well as effective treatment. Selfe et al (1998) questions the relevance of a specific biomed ical diagnoses based on their research using clinical samples in Britain; similar recommendations are suggested by others, however, the standard approaches of system by system examina tion to establish a diagnosis continues to be the most common approach for most women with the condition. Most of the women in the study have symptoms consistent with a diagnosis from each of the possible contributing systemsreproductive, urogenital, gastroin testinal, musculoskeletal and ps ychological. Although most of the women described signs and systems indicative of multi-system problems, most are receiving body system specific health care. The finding that multiple systems are involved could, from a reductionist perspective, support the suggestion from Selfe et al (1998) that diagnosis is not helpful in this population. Although the fact that that these wome n have symptoms of so many different body systems points out the inadequacy of a singular diagnosis, promotion of an interdisciplinary diagnosis seems more appropriate than completely condemning the concept of a somatic diagnosis for women with CPP. Effectiv e diagnostic approaches to CPP would seem to be ones that views body systems in a collaborati ve rather than a hier archal model. The psychological and social value of having a name for the pain repeated by women in this study and others (Grace 1995) illustrates the importance of diagnostic labels to the women suffering with CPP. For women with CPP the diagnostic la bel provides validati on of their pain to colleagues, friends, and family and legitimizes th eir symptoms to themselves as well; self-doubt related to not knowing what is wrong was commonly articulate d by women in this study. In more practical terms, the diagnos is, and the related me dical code, is the primary determinant of

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172 payment for health care services from both private and government agencies. One recommendation from this study would be for the development of interdisciplinary clinics for CPP and/or increased attention to CPP in primar y care with a primary care practitioner serving as the case manager for women with CPP. Increased involvement of primary care physicians in the management of CPP has been suggested in the pa st (Rosenfeld 1996) and is an approach that may or may not fit well within health care paym ent guidelines. Clearly attention to diagnostic categories appropriate for CPP car e in the primary clinic may need to be developed, with recommendations for needed modifications in payment plan closely following. The specialist and consulting cen ter nature of the clinical practices where the study data was collected could possibly have contributed to the broad range of diagnostic variables found so consistently across the study population. The clini cal sites in Memphis and Knoxville, where the majority of the women were located, specialize in chronic pelvic pain and so provide services to many women referred by other clinic ians after failed courses of treatment. It seems likely that women with more complicated social and medi cal histories are less likely to respond to traditional biomedical care and so are more likel y to find their way through professional or selfreferral to specialty clin ics such as those used in the st udy. The possibility exists that the complicated medical care could be iatrogeni c for some of the multi-system involved, for example, chronic pain medica tion and antibiotic use, both co mmon among women with CPP, could have ramifications in the gastrointestinal system. At this point in time, multi-system problems among women with CPP have not been approached from that perspective. Fragmentation The division of labor within the biomedical system is problem atic for women seeking care for pelvic pain. The American women in this study, consistent with the New Zealander women in previous studies (Grace 1995; 2000; 2007) reveal experiences w ith health care for CPP that

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173 leave them frustrated, doubting th emselves and continuing to look for the answer to the primary question that brought them to hea lth care-what is causing this pelv ic pain and what can be done about it? The system is set out so that al l body systems are not thor oughly addressed without consulting across clinical specialty areas, which for women with CPP means multiple clinic appointments, in multiple locations and of ten with multiple and many times conflicting directives on how to manage the condition. Altho ugh integrated and interdisciplinary approaches to CPP are the recommended approach to biomed ical management, establishing a diagnosis is a reductionist process aimed at id entifying a singular etiology respons ible for a patients symptoms that is often prolonged, perhaps contributing to the chronicity of the condition (Grace 1995; Grace 2007) Although integrated approaches are recomm ended and supported by this study as they have been in others, including a randomized clinical trial (Peter s et al 1991), it appears that reductionist diagnostic approaches to CPP prevailed in the experien ces of many of women in this study as they sought medical care for CPP. It ap pears that Gynevision (Ling 1993) continues to survive to some degree. Bates ( 1996) discussed the shortcomings of a fragmented approach to chronic pain management (i.e. health care provi ders choosing to address either physical or psychosocial aspects of pain) in her biocultura l study of chronic pain patients. She emphasized the importance of practitioners placing both psychological and phys ical findings in the context of socio-cultural roles and beliefs for effective management of chronic pain. In practice, it appears that a biomedical holisti c approach is conducted in a frag mented fashion as the division of labor in biomedicine is such that each body sy stem has its one speciali zed practitioner with a separate office and separate appr oach. Holistic biomedical care tu rns out to add variables rather than pull them together as women are move d through various medical specialties, being

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174 examined and treated one body system at a time. Women in this study, as in others, described how their senses of self as well as their understandi ng of the problem both become increasingly fragmented during the course of treatment. Ma ny women presented a fragmented perception of the problem as well as of their medical care. Th e extensive and complex medical history of many of the women in this study bears witness to th e phenomena of fragmentation of both self and health care common for women with CPP. Several women in this study described the ch aracter of their health care encounters as supportive, many times emphasizing their appreciation for the care they were currently receiving. The frequent medical appointments, which I exp ected to be described as problematic, were viewed by many women in the study as a positiv e attribute of their care as the continual interaction with health care professionals provided not onl y needed interventions, but also support. Biomedical caregivers may need to be convinced that enha ncing the function as a support mechanism is effective and appropriate role. Although trained to be compassionate and patient centered, biomedical pr actitioners are instructed to weigh most heavily the physical realities of a patients condition, keeping involvement with social aspects of the problem to a minimum (primarily consist of making appropria tor referral) and keeping their own emotions separate from their practice. Conclusions and Future Work For wom en with CPP, biocultu ral perspectives on the causes of their suffering and their responses to treatment have the potential to contribute meaningful information about their health and the rehabilitation process. This study provi des an account of how African American and European American women with CPP view the cause s of their pain, the eff ects of pelvic pain on their lives at home, at work and in the community and their perceptions of the effectiveness of treatments that gives direction to future cont extual studies. This study also contributes an

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175 examination of racial and ethnic differences in the known diagnostic and social correlates of CPP to the relatively sparse literature that describes racial and/or ethnic corre lates of the biomedical profile of the condition. Despite th e limitations of the sample size, the study findings corroborate findings in previous studies and support further ex amination of ethnic differences in the clinical and social characteristics of wo men with CPP as well as more focused study on the relationships between sexual and physical a buse and womens experiences w ith pelvic pain. The findings support further study aimed at explaining why some women exposed to abuse do and others do not develop CPP, and as well as why women without an abuse history ar e also susceptible. In addition, further study is warranted to clarify wh at role, ethnic background contributes to the development of CPP among women. Susceptibility to developing CPP, the developmental course of the condition from simple and acute to ch ronic and complex, and the responsiveness of symptoms to treatment are all important issues on the future research agenda for CPP in women that will be best addressed from a biocultural perspective. Cross-cultur al studies as well as cultural and feminist critiques that examine ethno-cultural and socio-demographic characteristics among women with CPP with larger sample sizes that encompass both clinical and non-clinical samples of women with CPP will be helpful to gaining a better understanding of this problem and to alleviating the suffering associated with it. Health Care for Women with Chronic Pelv ic Pain Throu gh a Biocultural Lens The diagnostic profiles of the women in this study support an interdisciplinary, integrated bioculturally informed approach to CPP manageme nt. A biocultural approach to health care for women with CPP would ultimately be characterized by changes in delivery models to a more patient centered, comprehensive/interdisciplinary clinical examination and treatment than most women are currently experiencing. Cl arifying causality would also be a priority as women in this study, consistent with the New Zealander women interviewed by Grace (1995), indicated that

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176 they want to understand the cause of their pain almost as much as they want it to be alleviated. Considering this, a biocultural approach to CPP would emphasize explanatory models that clarify for women how both the biological and th e cultural aspects of their lives interact to contribute to their pain and to th eir recovery from it. Cognitive and behavioral therapies would also be central to a biocultural approach to hea lth care for CPP. Behavior al conditions associated with CPP such as depression, anxiety and post-tr aumatic stress disorder (PTSD) are routinely treated with medication designed to alter the biochemistry that drives the behavior. The recognition of the interaction be tween biochemistry and psychol ogical pathology is consistent with an integrated approach that recognizes psychological and biologi cal factors and their interaction. Physiological intervention is, however, the more cust omary first line approach to the clinical management of psychological, social and emotional issues. Family and individual counseling was infrequently a component of treatment for women in this study with less than 10% reporting referrals to counseling services but the majority reporting treatment with antidepressants and some point in their course of care for CPP. Testing and expanding biocultural models in clin ical situations will facilitate the continued acquisition of information about th e social context of CPP and enhance the ability of biomedical practitioners to provide health care that better meets the needs of the many women affected by this condition. Changed approaches to biomedical practice would also in pr actical terms, need to be supported in the curricula of medical and other health professions schools addressing ethnocultural as well as psychological and biological aspe cts of CPP. Biocultural studies such as this one will help inform such broadened training and practice.

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177 APPENDIX A MEASURMENT INSTRUMENTS Biocultu ral Correlates of Chronic Pelvic Pain in Women Patricia Marie King Baker Guiding Questions: Explanatory Mo dels-Cause of Pelvic Pain 1. What do you think causes your pelvic pain? 2. What do you think is causing the symptoms/c hanges you are experiencing during sexual activity? 3. Why do you think it started when it did? 4. What does pelvic pain do to you? How does it work on your body? 5. How long do you think it will last? 6. How have you treated it so far? 7. Are there other treatments you would like to have or th at you think would help? 8. What are the main problems that pelvic pain has caused you? 9. What do you fear most about your pelvic pain problem? 10. I know very little about your cult ure, is there something thats been suggested for to treat your pelvic pain that does not fit with your beliefs about pelvic pain or how to treat it? Biocultural Correlates of Chronic Pelvic Pain in Women Patricia M. King Baker

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178 Ethnicity Survey 1. Do you consider yourself to be a member of any of the ethnic group? If you have more than one ethnic affiliation, which is primary and which is secondary? African American Hispanic Irish Polish Italian French Canadian American Indian/Native American Other group? Did you grow up in a country other than the US? Your parents or grandparents? 2. If you are currently religiously active, wh at affiliation? Is it different from your childhood/ Participant ID: Biocultural Correlates of Chronic Pelvic Pain in Women: Patricia M. King Baker Semi-structured Interview-Social Role s, Responsibilities & Resources (SRRR)

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179 Interview Guide Part I. Introduction to this part of the interview Introductory statement: This is the part of the interv iew where we will talk about your daily routine. Ill be asking you questions about the jobs you do each day---not ju st paying jobs, but other things like, for example, your responsibilities at home, with your friends and family and in your neighborhood, in your church. I have the idea that the number of things people have to do each day and the amount of time they have to do their jobs and to take care of themselves might have some affect pain and other illnesses. Just like with the othe r parts of the interview, you dont have to answer any question you dont want to answer. There ar e no right or wrong answ ers to any question. I will ask you some questions about your income and other resources that are available to you to do the things you want and need to do each day. And again, you dont have to answer any question you dont wish to answer. A ll of your answers will be kept strictly confidential, as is all the information from todays session. A. Social Roles How many people in your home? Kinship or other relationship to people in home? Family, friends and gr oups (regula r contact) Occupational roles and responsibilities Household roles and responsibilities Community roles and responsibilities Other? B. How Roles are altered by Pelvic Pain? Any changes in how roles altered fo r better or worse with treatment? Average day: types of thing do for other and time spent?

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180 Average day: types of things do for self and time spent? Average day: types of things others do for you and time spent? II. Health Behaviors A. Free List What types of things do you do on a regular basis to take care of your health? Has pelvic pain changed those things? B. Sleep Do you sleep well at night? How many hours a night woul d say you sleep each night? Has sleep been altered by pelvic pain? What time do you go to bed? Get up/ B. Exercise How much time do you exercise each week? Type of exercise Has exercise been altered by pelvic pain? C. Health Care How often do you see a doctor or other health care practitioner? Has pelvic pain altered the frequency of doctor visits? C. Stress How would you describe your stress level? Whats the most stressful thing on an average day? How to you respond?

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181 III. Lifestyle How has pelvic pain changed your life: At work? At home? Socially? In the Community? Other Ways IV. Treatment Response Are you better? Whats helping if a nything? What do you think will help? Bio-Cultural Correlates of Chronic Pelvic Pain in Women Study Physical Assessment Form Participant ID: _______________ Date : ____________________Examiner Initials:____________ Group A. Lumbar Posture Assessment Inclination Angles L5-S1_______________Degrees T12-L1_____________Degrees

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182 Group B: Hip Mobility-Flexibility and Range of Motion Assessments Hip Passive ROM Test Po sition: ________Sitting ________Supine ________o Internal Rotation (Right) _________o External Rotation (Right) ________o Internal Rotation( Left) _________o External Rotation (Left) Thomas Test _________o Hip Flexion (Right) _________o Hip Flexion (Left) Group C: Muscle Performance Assessments 1. Kendall Abdominal Test I N (5)________G (4) _________F+ (3)_______F (2)________P or below (1)______ Kendall Abdominal Test II N (5)________G (4) _________F+ (3)_______F (2)________P or below (1)_______ Trendelenbergs Test Right Gluteus Medius: _______(0) Negative ________(1) Positive Left Gluteus Medius: ________(0) Negative _________(1) Positive November 1999, The International Pelvic Pain Society This document may be freely reproduced and distributed as long as this copyright notice remains intact (205) 877-2950 www.pelvicpain.org (800) 624-9676 (if in the U.S.)

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183 Pelvic Pain Assessment Form Physician: Initial History and Physical Exam Date: Contact Information Name: Birth Date: Chart Number: Phone: Work: Home: Is there an alternate contact if we cannot reach you? Alternate contact phone number: Information About Your Pain Please describe your pain problem: What do you think is causing your pain? What does your family think is causing your pain? Do you think anyone is to blame for your pain? Yes No If so, who? Do you think surgery will be necessary? Yes No Is there an event that you asso ciate with the onset of pain? Yes No If so, what? How long have you had this pain? < 6 months 6 months 1 year 1 2 years > 2 years For each of the symptoms listed below, please bubble in your level of pain over the last month usin g a 10-point scale: 0 no pain 10 the worst pain imaginable How would you rate your present pain? 0 1 2 3 4 5 6 7 8 9 10 Pain at ovulation (mid-cycle) Pain level just before period Pain (not cramps) with period Deep pain with intercourse Pain in groin when lifting Pelvic pain lasting hours or days after intercourse Pain when bladder is full Muscle/joint pain Ovarian pain Level of cramps with period Pain after period is over Burning vaginal pain with sex Pain with urination Backache Migraine headache What would be an acceptable level of pain? What is the worst type of pain Kidney stone Bowel obstruction Migraine headache that you have ever experienced? Labor & delivery Current pelvic pain Backache Broken bone Surgery Other 1999, The International Pelvic Pain Society

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184 Page 2 1999, The International Pelvic Pain Society Demographic Information Are you (check all that apply): Married Widowed Separated Committed Relationship Single Remarried Divorced Who do you live with? Education: Less than 12 years High School graduate Bachelors degree Postgraduate degree What kind of work are you trained for? What type of work are you doing? Health Habits Do you get regular exercise? Yes No Type: What is your diet like? What is your caffeine intake (number per day, include coffee, tea, soft drinks, etc.)? 0 13 4 >6 How many cigarettes do you smoke per day? How many years? Have you ever felt the need to cut down on your drinking? Yes No Have you ever felt annoyed by criticism of your drinking? Yes No Have you ever felt guilty about your drinking, or about something you said or did while you were drinking? Yes No Have you ever taken a morning eye-opener drink? Yes No What is your use of recreational drugs? Never used Used in past, but not now Presently using Choose not to answer Heroin Amphetamines Marijuana Barbiturates Cocaine Other Have you ever received treatment for substance abuse? Yes No Coping Mechanisms Who are the people you talk to concerning your pain, or during stressful times? Spouse/Partner Relativ e Support Group Clergy Friend Doctor/Nurse Mental Health Professional I take care of myself How does your partner deal with your pain? Doesnt notice when Im in pain Takes care of me Not applicable Withdraws Feels helpless Distracts me with activities Gets angry What helps your pain? Meditation Relaxation Lying down Music Massage Ice Heating pad Hot bath Pain medication Laxatives/enema Injection TENS unit Bowel movement Emptying bladder Nothing Other What makes your pain worse? Intercourse Orgasm Stress Full meal Bowel movement Full bladder Urination Standing Walking Exercise Time of day Weather Contact with clothing Coughing/sneezing Not related to anything Other Of all of the problems or stresses in your life, how does your pain compare in importance? The most important problem Just one of several/many problems

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185 Menses How old were you when your menses started? Are you still having menstrual periods? Yes No Answer the following only if you are still having menstrual periods: Periods are: Light Moderate Heavy Bleed through protection How many days between your periods? How many days of menstrual flow? Date of last menses? Do you have any pain with your periods? Yes No Does pain start the day flow starts? Yes No Starts days before flow starts: Yes No Are periods regular? Yes No Do you pass any clots in menstrual flow? Yes No Bladder Do you experience any of the following: Loss of urine when coughing, sn eezing, or laughing? Yes No Frequent urination? Yes No Need to urinate with little warning? Yes No Difficulty passing urine? Yes No Frequent bladder infections? Yes No Frequency of nighttime urination: 01 2 or more Volume: Small Medium Large Frequency of daytime urination: 8 or less 915 >16 Volume: Small Medium Large Do you still feel full after urination? Yes No Bowel Is there discomfort or pain associated with a change in th e consistency of the stool (i.e., softer or harder) ? Yes No Would you say that at least one-fourth (_) of the occasions or days in the last 3 months you have had any of the following (Check all that apply) Fewer than three bowel movements a week (02 bowel movements) More than three bowel movements a day (4 or more bowel movements) Hard or lumpy stools Loose or watery stools Straining during a bowel movement Urgency having to rush to the bathroom for a bowel movement Feeling of incomplete emptying after a bowel movement Passing mucus (white material) during a bowel movement Abdominal fullness, bloating, or swelling 1 The Functional Gastrointestinal Disorders, Drossman, et al. Chapter 4, Functional Bowel Disorders and Functional Abdominal Pain. 1994. Gastrointestinal/Eating Do you have nausea? No With pain Taking medications With eating Other Do you have vomiting? No With pain Taking medications With eating Other Have you ever had an eating disorder su ch as anorexia or bulimia? Yes No 1999, The International Pelvic Pain Society Page 7

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186 Have you ever been hospitalized for anything besides surgery or childbirth? Yes No If yes, explain: Have you had major accidents such as falls or back injury? Yes No Have you ever been treated for depression? Yes No Treatments: Medication Hospitalization Psychotherapy Birth control method: Nothing Pill Vasectomy Hysterectomy IUD Rhythm Diaphragm Tubal Ligation Condom Other: Is future fertility desired? Yes No How many pregnancies have you had? Resulting in (#): Full 9 month Premature Abortions (miscarriage) # living children Any complications during pregnancy, labor, delivery, or post partum period? 4 Episiotomy C-section Post-partum hemorrhaging Vaginal lacerations Forceps Medication for bleeding Other: Has anyone in your family ever had: Fibromyalgia Chronic pelvic pain Scleroderma Endometriosis Lupus Interstitial cystitis Cancer Depression Irritable Bowel Syndrome Recurrent Urinary Tract Infections Place an X at the point of your most intense pain. Shade in all other painful areas. Page 8 1999, The International Pelvic Pain Society Sexual and Physical Abuse History Have you ever been the victim of emotional abuse? This can include being humiliated or insulted. Yes No No answer As a child (13 and younger) As an adult (14 and over) Circle an answer for both as a child and as an adult. 1a. Has anyone ever exposed the sex organs of their body to you when you did not want it? Yes No No answer 1b. Has anyone ever threatened to have sex with you when you did not want it? Yes No No answer 1c. Has anyone ever touched the sex organs of your body when you did not want this? Yes No No answer 1d. Has anyone ever made you touch the sex organs of their body when you did not want this? Yes No No answer 1e. Has anyone ever forced you to have sex when you did not want this? Yes No No answer 1f. Have you had any other unwanted sexual experiences not mentioned above? If yes, please specify: Yes No No answer 2 When you were a child (13 or younger), did an older person do the following? a. Hit, kick, or beat you? N ever Seldom Occasionally Often b. Seriously threaten your life? Never Seldom Occasionally Often 3 Now that you are an adult (14 or older), has any other adult done the following: a. Hit, kick, or beat you? N ever Seldom Occasionally Often b. Seriously threaten your life? Never Seldom Occasionally Often Leserman, J., Drossman, D., Li, Z: The Reliability and Validity of a Sexual and Physical Abuse History Questionnaire in Female Patients with Gastrointestinal Disorders. Behavioral Medicine 21:141, 1995

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187 Dear Healthcare Professional: The Research Committee, headed by Deborah Metzger, M.D., Ph.D., along with the Board of Directors of The Interna tional Pelvic Pain Society are proud to present this Pelvic Pain Assessment Form for use in the medi cal community. This form has been developed by clinicians who treat chronic pelvic pain on a daily basis, and is the culmination of two year s effort. We hope that you find it useful. The Pelvic Pain Assessment Form is designe d to be printed front and back to yield a total of 10 pages on 5 sheets, for your convenience. It is our desire that this form become a standard in your intake procedures. We solicit your constructive comments. It is only by open communication from the clinician who uses this form consistent ly that we will impr ove it. You can phone your comments to the number shown on the form, or e-mail us at pelvicpain@aol.com Sincerely, C. P aul Perry, M.D., Debor ah Metzger, M.D., Ph.D. Chairman of the Board of Direct ors Chairperson, Research Committee

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188 APPENDIX B IRB APPROVAL AND INFORMED CONSENT Please type or w ord process the following information. UFIRB # _2003-U-523___ PRINCIPAL INVESTIGATOR __Patricia M. ing_____________________________ PROTOCOL TITLE _Bio-Cultural Correlates of Chronic Pelvic Pain in Women: Examining Relationships Among Ethnicity, Social Roles, Pa in Character, Physical Impairments and Level of Function_____________________________________ Continuing Review/Study Closure Report To help us keep our records current, please co mplete the following and return it to the UFIRB Office, PO Box 112250, Gainesville, FL 32611-2250. If you have any questions, please call 3920433. (This form is also available at http://www.ortge.ufl.edu/irb/irb02.) Check all items that apply to your protocol a nd provide requested information. (You may attach additional sheets if necessary.) 1. On what date did data collection begin? ___will begin 5/10/04_______ 2. Please indicate the statement that best describes the status of this protocol: ____ a) I have completed work on this prot ocol. I will answer the remaining questions on this form to enable the IRB office to officially close the protocol. ____ b) I have not begun data co llection. I plan to start on ____ _X_ c) Human participants are currently bei ng recruited. I have attached 3 clean copies of the current informed consent. Upon approval, the IRB will stamp an expiration date on them, and return one copy for me to duplicate. ____ d) No further recruiting wi ll occur after the expi ration date. However, the data collected during the research shall be analyzed. ____ e) No further recruiting of participants w ill occur, but data collection will continue on at least one participant. ____ f) No further recruiting wi ll occur. All interven tions are completed on all participants, but follow-up is being conducted as described in the informed consent. These follow-up activities are described as follows:

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189 3. If there have been any additions or deletions to the list of researchers involved with this protocol, I have described the reason for each change below and have updated the informed consent form to include only the current researcher(s): N/A 4. If the protocol is externally funded, and th e information about sponsorship is not correct in the protocol, the revised IRB form identifies the following sponsor(s): Self-funded by PI: no changes 5. Please indicate the following: ____ a) The total number of participants recruited during th e past year:_________ ____ b) The total number of participants to be recruited during the next year:________ ____ c) I have recruited, or pl an to recruit, more participan ts than originally estimated because: __X_d) I have recruited no participants because: I relocated from Virginia to Tennessee after the study protocol was approved. I put th e study on hold during the transition period when I had teaching responsibilities in both locations. I am now settled in the new location in Tennessee and have establis hed new contacts here for participant recruitment and will begin data collection in Tennessee in May. A small number of participants (less than 20) are expected from the Virginia location. Data collection in Virginia is scheduled for May 25June 4, 2004. 6. Was written informed consent required by th e IRB and obtained from each participant? __Yes__No N/A If the answer is YES, attach to this form a photocopy of the last signed consent that you obtained. If the answer is NO, please explain the circum stances under which written informed consent was not obtained:

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190 7. Were any changes, however minor, made to your protocol last year? __X_Yes__No One change is included in this report. Local support groups for women with chronic pelvic pain will be utilized to recruit study participants in addition to clinic al sites where women are seeking care. Written and verbal explanations of the study will be provided to support group members during meetings with the prior approval of support group leaders. If YES, were those changes reviewed and appr oved by the IRB prior to their implementation? ___Yes___No If changes were made to the protocol that were not submitted to and approved by the IRB, please describe the revision and explain why it was not sent to the IRB for review: N/A 8. Did any unanticipated outcomes or adverse events occur the past year?__Yes_X_No If YES, please indicate which ones were previously reported to the IRB: 9. Did any participant withdraw from this research project during the past year? __Yes_X_No If YES, please indicate the reason for EACH participant's withdrawal: 10. The research participants in this protocol include the following that are checked: ___Infants ___Children __Adolescents _X_Adults ___Prisoners _X__Pregnant women ___Mentally or emotionally challenged individuals Participants in the above categories w ill be recruited for this protocol. 11. The IRB, the University of Florida, and the Federal regulatory agencies consider continuing reviews to be extr emely important. Research st udies are approved based on an estimated ratio of potential benefits to possible risks. Comment on how your participants re sponded to the study and tolerated your interventions. (This item may be omitted only if no data were collected on research participants in the last year.) N/A Give your opinion about any changes in the risk-benefit ratio. Is there any new information (e.g. alternative procedures, new information published in the literature) that might affect the risk benefit ratio?

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191 I plan to add additional compensation for trav el to the study site for participants who make a special trip to the sites outside their re gularly scheduled clinic visits. Otherwise, there is no new information to report regarding the risk benefit ratio. If data from your study have been reporte d, attached one copy of each published report. Principal Investigator:_______________________ Date __________________ Supervisor (of student PI)____________________ Date __________________ Department Chair__________________________ Date __________________ Thank you for completing this information. Please re turn this form to the UFIRB Office, PO Box 112250, Gainesville, FL 32611-2250. If you have any questions, please call 392-0433.

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192 APPENDIX C CODING AND TEXT ANALYSIS Code Book Chronic Pelvic Pain DataExcel F ile: CPPdataKingBaker07 Trish King Baker, Biological Co rrelates of CPP in Women A=Case #001-063 In chronological order of signed Informed consen t beginning with partic ipants from Memphis, followed by Nashville, Winchester and Knoxville (1-63) B=Ethnicity 1=African American 2= White non=Hispanic 3=Other Self-report C=Age Age in years on date Informed consent was signed D=Marital status 1=Married 2=Single 3=Divorced 4=Committed Relationship5=widowed 6=separated E=Head of Household (HOH ) Adult with sole financial responsibility for household 1=Yes, participant is HOH 2=No, not HOH F =Work Status (WrkStat) 1=Full time employed 2=Part-time employed 3=Homemaker 4=student not working 5=not working due to health 6=retired 7=not working not due to retirement/ health G=Education 1=less than 12 years 2=High School Graduate 3=some college or technical school after high school 4=BS degree 5=graduate school H=Musculoskeletal Pattern (MSKPtrn) 1=participant fits the Musculoskeletal CPP Patte rn (at least 2 positive findings on physical exam-+Thomas Test, +Hip Rotation Restriction, +increased Lumbar lordosis (12> at L5-S1), Abdominal strength 3/5 or less) 2=Participant does not fit pattern in 2 or more findings I=Pain Intensity (P!Intensity) 0-10 scale (0=no pain, 10 worst imaginable, need to be s een in hospital) Overall worst level of pain associated with CPP

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193 J=Pain with intercourse (Sex!P !) 0-10 scale Highest # selected on scale for either deep pain with intercourse, pelvic pain lasting after intercourse or burning pain with in tercourse from page 1 IPPS form K=Pain Location (P!Location) 1= abdominal-midline or both sides 2=right abdominal is predominant 3=left abdominal is predominant 4=pelvic floor, vaginal or re ctal pain is predominant From pain drawing IPPS form, description of problem page 1 IPPS L =Acceptable level of pain (Acceptp !) 0-10 Participant rating of an acceptable leve l of pain on 0-10 scale (page 1 IPPS) 99=Missing data M= Gynecological Signs or Symptoms 1=Yes, reports Gynecological signs or symptoms associated with problem either currently or in past 2=No, Gynecological Signs or Symptoms not reported Coded Yes if reports pain with orgasm, ovarian pain, positive response to pain with periods (during before or after-non cram ping), diagnosis of endometriosis, dysmenorrheal, ovarian cyst, uterine fibroid, gynecological adhesions, hi story of hysterectomy to resolve CPP) N=Urological Signs or Symptoms 1=yes, reports Urological Signs or Symptoms 2=No, does not report Urological signs or Symptoms Reported on IPPS form page 1 (pain with full bla dder) and page 3-reported as yes if answered in positive to questions re: SUI, frequency, urgency, nocturia 0=Gastrointestinal Symptoms 1=Yes, reports Gastrointenstinal Signs or Symptoms on Drossmans Bowel Disorders questionnaire page 3 IPPS form 2=No, does not report Gastrointe nstinal Signs or Symptoms P=Exercise Regularly 1=Yes, reports participates in exercise regularly (page 2 IPPS) 2=No, reports does not particip ant in exercise regularly Q=Depression Treatment 1=Yes, reports current or previous treatment for depression (page 7 IPPS) 2=No, reports no current or prev ious treatment for depression

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194 R=Problem Rank 1=CPP is the most important problem in the womans life 2=CPP is on of many problems/stresses in the womans life (page 2 IPPS) 99=Missing S=Treatment Response-are you getting better (Better ?) 1=Yes, Participant reports CPP is getting better (final question, semi-structured interview) 2=No, reports not getting better 3=Better only when taking medication 4=Reports unsure if better or not 99=Missing T =Number of Pregnancies (Preg#) 0-10 number of pregnancies 99=missing U=Low Back Pain as co-morbidity? (LBP) 1=Yes, LBP reported as co-morbidity either on pa ge 1 IPPS, on pain drawing or during interview 2=No, LBP not reported V=Abuse History (AbuseHx) 0=no history of emotional, physical or sexual abuse as child or adult 1=sexual abuse as child/adolescent 2=sexual abuse or assault as adult (over age 18) 3=physical abuse as child 4=physical abuse as adult 5=sexual & physical as child 6=sexual & physical as adult 7=emotional abuse 8=emotional & sexual child 9=emotional & sexual adult 10=EPS child 11=EPS adult 12=Emotional & physical child 13=emotional & physical adult 99=missing W=Clinic Location (Clinic) 1=Memphis 2=Knoxville 3=Nashville 4=Winchester

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195 X =Number of Children 0-10 number of children reported 99=missing Y=Total number of people currentl y living in participants home 0-10 number reported living in home 99=missing NARRATIVE THEME: CAUSALITY Cause Unknown African American Women M2: The pain started at age 14 when I was raped. What do I think is the cause of the pain? I have no idea. M21: I dont know what causes it; Im on the go all the time; my mom thinks its because I dont get enough rest M22: I dont know what is causing my pain. Dr. Ling says it is my muscles Its not normal to have pain there. PK: What do you think is causing it? M36 : I dont know. PK : Sometimes even though they havent told y ou but you might have something in your mind that kind of seems like it is but nothing like that, no clue? M36 : No clue PK : Did they do the hysterectomy because of the pain or for some other reason? M36 ; The pain and also he said I had a lot of scar tissue. PK : What was the scar tissue from? M36 : I dont know. PK : Did you feel better for a while in term s of the pain after the hysterectomy? M36 : Yes. PK : Is the pain you have now the same as before the hysterectomy? M36 : Yes it was. PK : It got a little better but for the last 10 years you still have it? M36 : Yes. It never really went away. I thought it was maybe from the scar tissue because he went in and he never did get anything out because I started bleeding real bad so he had to close me up. Ever since then it never stopped.

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196 White American Women-Memphis M9 : I do not have a clue what is causing the pain M17 : Pelvic? Trying to understand (me and my family) PK : In terms of an event that st arted it initially when it first st arted was there anything you had related having this pain? M32 : When I was young. PK : Has it been constant since then? M32 : Yes. Since I was 13 or 14 and I went to a doctor, a gynecologist, when I was about 15 and he said I was too young to have this, to have prob lems like this and he kept putting me on the pill which my body reacts very negatively to. I get violently ill and ended up in the hospital a few times. Anything that increases my hormone levels just sends my body in more pain. M32 : There has never been any rhyme or reason to any of it. Ever since I was 13 or 14 I had a really bad one then I wouldnt for months. Its b een that way. Its never changed as far as the roller coaster. Its not the same ev ery month. Some mont hs I feel great. M34 : At times I just feel like I need to start my period and you know of course I havent had one going on seven years so Ill ju st get in a ball and try. M37 : I dont know. I thought adhesions since Ive ha d so many surgeries and Dr. Ling has ruled that out with a CAT scan PKB : Whats the worst part of this experience? M37 : Not knowing; and the sleep (interrupted sleep ) When its going on (pain) often it is in the middle of the night PKB : Cause of your pain, you have a question mark. M43 : I dont know. PK : You just dont really have any idea? M43 : Ive had every test and Im sure theres more out there but Ive had a lot of tests and its not showing anything. PK : Sometimes we will have an idea in our mind lik e it seems to me like it s this or that? M43 : I have said from the beginning of it I thought it had something to do with the screen that he put in to repair the hernia only because it started after that surgery but it doesnt feel like anything else Ive had before. PK : Okay. And in terms of what you think is causing the pain, endometriosis is it? M52 : I have no idea. PK : You really feel like you have no idea? M52 : I really dont; since Ive had so many surgerie s and it just doesnt seem to help and Ive tried every hormone drug available and you know anti-inflammatory and everything and it doesnt seem to help that you just kind of thi nk it could be something else, you know what is it

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197 M52 : People dont know but sometimes people have ju st like something that doctors never said it or doctors never acknowledged it but it just feels like if this w ould just happen or that would just happen it might get better. M52 : On the cause and what might help: Thats just a big question mark. White American-Knoxville K1 : Concentrating on staying on ice, going to th e doctor, trying to find out what was wrong, staying on ice, getting in the be d, doing a load of clothes then getting back in the bed, get on heat, alternate, alternate to be able to get up and go back to wor k. Work on ice all day, why cant I see it, nobody has a reason you know. It was just a continuation of that until I started doing this (physical therapy) on my own. K2 : Well, the physical therapist thou ght all along that I had two lumbar issues and I do have, but she doesnt think thats whats causing my problem. I think its a little bit of a mystery to her too. K9 : Interstitial cystitis causes the bladder pain. It just came out of the blue as far as I can tell. I used to drink a lot of coffee and Im sure that I ate, of course I ate all those other things, acidic things that were irritating. It just hit me like a bolt out of the blue--knocked me off my feet I have burning pain in my vagina; I dont know what causes that K10 : You do think what is this horri ble pain? I still want an answer about this swelling. I want to know why K14 : I dont feel like theres an actual explana tion. Even when they did the surgery for the endometriosis he was expecting to go in and fi nd a whole bunch and that would explain and they even cut the nerves that connect to my uterus and ovaries and apparently it didnt work because I still feel all the pain. He wont tell me that he s run out of options. He keeps telling me well try different things. He sent me here. He sent me to the IC clinic. Childbirth African American White American-Memphis M23 : Cause: Giving birth and placenta not coming out. Children are 2 years old and 6 years old, pain related to having children; no pain with periods, no intercourse pain. M39 Actually its been seven years, it started after my second chil d, hell turn seven in August. The pain got to the point where I couldnt walk, I couldnt function any more and that started at five years ago. One year after having him I we nt to an OB/GYN and she said oh thats just normal for two kids and she just kind of sent me away. K3 : This last doctor I went to said that it could be a scar from childbirth

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198 M5 : My daughters do whatever they can to help me; they think the problem is their being born and stuff. I said its just from what I had to go through to bring you into this world but it is not your fault. M5 :My husband thinks the doctors are too bl ame that it was from problems with 2nd c-section; during the 2nd pregnancy I was humiliated by physician a nd 5 residents in front of my husband the decision for the C-section made by the doctor and my husband, I did not want it; I did not want pregnancy or the C-section due to pain from 1st c-section; I was already upset to be pregnant 4 months after the first Caesarea n Section (C-section)N ow that Ive had a hysterectomy I think the pain is mostly muscular. Abuse/Assault African American M2 : The pain started at age 14 when I was raped. What do I think is the cause of the pain? I have no idea. M4 I did think it was because of the rape; it started after I was raped when I was 18 years old. I bled for 2 days after I was raped. Ive been told it is because of ovarian cysts and scar tissue. M40 : My daddy kicked my mom in the behind when she was pregnant with me, kicked a hernia in my stomach so I was born with a hernia n eeding hernia surgery a nd they couldnt wait any longer. I had it at two but they couldnt wait any longer. I was wounded before I was born. PK : Do you have memories that far back? M40 : I remember hurting in my thighs. Thats all I remember. White American Knoxville Life White American Memphis PKB : What do you think is causing your pain? M25 : Life-my husbands disability, my kids. I internalize a lot. PKB : Was there an event associat ed with onset of your pain? M25 : Yes, it was work; we were moved to a different office; I didnt want to go. W1: I thought it was either irritabl e bowel or I had a tumor in my stomach or cancer. I thought I had some cancers internally becau se there was constant pain. I thought I had something seriously wrong with me. I think now, what it that was goi ng on there at that time was, I think it was most likely stress. There was someth ing else that was going on. M19 : Maybe its stress; Ive had a lot. My brothe r committed suicide; my husband lost his job; There were changes at work that have made work environment miserable for the last 4 years but Im now the primary breadwinner at home so I ha ve to put up with it; our children are having problems that are costing us moneyit goes on. Th e last episode of incr eased pain did start while I was at work a few months ago

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199 Injury/Accident African American M6 : It started after I was injuries in a car acci dent 14 years ago; I was mainly hurt on my left sidearms and legs W hite American Memphis Whit e American Knoxville K7 : My mother and I were talking about this last weekend. I was working ta bles in a restaurant in college. I had an episode in my lower back and who knows thats when this could have all started. I was leaning over a table and wiping it. I just stopped. It was to the point where I got down on the floor and couldnt get back up kind of th ing. I went to a chiropractor at that time. That kind of worked out. I had episodes that ha d gone through my mind that were what I called lower back and diagnosed many times with lower back problems. Medical Diagnosis African American M1 : I mean Ive read a lot about it (endometriosis) so I mean thats basically my only question is the endometriosis and then what actually is th e pelvic floor pain, I mean I know what they are but, and the muscle spasms, how des that actuall y, if its not caused from the endometriosis, how is another way that I could have got this? White American Memphis M28 : I know that a lot of it is period related and my guy (doctor) said thats definitely the worst time and my pain is the worst then. M32 : Pt: I think Ive read every book on endometrios is and womens disorder and I just wanted to be sure you didnt have a nything else that I could do. PK : When you had the gallbladder surgery it didnt make it any better, right? M34 : Right. My main thing is adhesions that th e surgeries they tried to do laparoscopies and they get in there and cant see because Im so ba lled up with adhesions and this and that. I feel thats the main factor White American Knoxville K5 : Thats what I think it is the endometriosis causing my pain; most of the doctors and my therapist agree I think, one may be a little more one way and one ma y be a little less another way but all around about my doctors thinks I have intersti tial cystitis as well as hes the one that said I had the chronic pelvic pain. You know I was associating it with my periods and the fact that this all seemed to get at its worst point when I got, when I did tubal ligationa lot of times I just honestly feel like if I could just cut those bands off this pain would end.

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200 PKB : What do you think is causing your pain? K8 : Endo and IC PK : You are pretty comfortable those are the answ ers? You dont have an idea it was something else out there they havent figured out yet? K8 : I have such good doctors. I just cant go through life like what if I have this, what if I have that. I look at the Internet. Before I had interstitial cystitis my dad would look up a bunch of stuff and I was like dont tell me anything. I dont wa nt to know unless I have it. If I have it well look at it but I dont want to know K9 : Interstitial cystitis causes the bladder pain. It just came out of the blue as far as I can tell. I used to drink a lot of coffee and Im sure that I ate; of course I ate all those other things, acidic things that were irritating. It just hit me like a bolt out of th e blue--knocked me off my feet. I have burning pain in my vagina; I dont know what causes that K15 : Im thinking maybe its arthri tis, I dont know. My mother ha d osteoarthritis. She had a hard time with that. it didnt start happening un til after my surgery but I was thinking because Im not on any hormone replacement that it could be from that. Medical Procedure African American M3 : I think it start after the colon resection surgery and from scar tissue from hernia surgery; the pain I have now got wors e after the hysterectomy PK : That was a hysterectomy? M48 : No, they went in and tried to stop the flow of the blood going to the fibroid tumors and they went in through the main artery on the right side M48 : Nobody knew what was the problem that is w hy I came to Dr. Ling. One doctor thought it was appendicitis but they didnt ta ke it out; they said it was ok ay. They ruled that out. One doctor said irregular bowel syndrome because it cause s so much pain in that area. One time they said it was musclesThey put me on medicationthat didnt help. PKB : You think the problem does come from the surgery you had? M48 : I kind of think so, it may not be but I kind of think so. I started having the day I had the procedure done. White American Memphis M35 : I used to blame God for a while. I worked that out. Now I blame birth control. I was on birth control pills when I was a bout 14-years-old. I really think that maybe it played a part. I started my periods just before my 10th birthday. PKB : How old were you when the hysterectomy was done? M35 : Just after my 22nd birthday. PKB : You dont think it is endometriosis?

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201 M35 : Not anymore PK : Just really feel like you dont know? M35 : My personal opinion it might be from eight surgeries. You cut into somebody eight times youre going to cut nerves and youre going to cut muscles and eventually things cant form back the way they are supposed to be you know no matte r how much scar tissue tries to develop. I dont have to be a doctor to know that. Its kind of like embroidery. You stitch and stitch and eventually you remove stitches and the fabric never goes back to the way it was originally. PKB : Cause of your pain, you have a question mark. M43 : I dont know. PK : You just dont really have any idea? M43 : Ive had every test and Im sure theres more out there but Ive had a lot of tests and its not showing anything. PK: Sometimes we will have an idea in our mind lik e it seems to me like i ts this or that? M43: I have said from the begi nning of it I thought it had something to do with the screen that he put in to repair the h ernia only because it started after that surgery but it doesnt feel like anything el se Ive had before. White American-Knoxville K2 : I have a chiropractor in town and thats when the problem really started; it started with the chiropractorI was having a mid back (bra strap level) adjustment but it was not a problemI had a herniated disc in my thoracic spine In fact I had MRI because of the problem I was having. But I was with the chiropractor and he was doing some mid back adjustments and during that time I went in one day and my tail bone was bothering me. Well I had been sitting hours at the computer and I could find a reason for my tailbone to be bothering me. I said to him that day I said my tailbone is bothering me. He said we can take care of that. He took films and said you tailbone is out of line so he adjusted it and after that, well And so that was on a Wednesday and by Saturday I felt like something, like I said in the beginning, was sticking in me and I called him and he told me to come back in and he tried adjusting me several more times and finally said that what he was doing was not helping and suggeste d at that time that I have an MRI. He said he could get it adjusted but it was holding and that s where I associated w ith the problem starting but if he had anything to do with it I dont know. Im not trying to put blame on him K5 : Thats what I think it is the endometriosis causing my pain; most of the doctors and my therapist agree I think, one may be a little more one way and one ma y be a little less another way but all around about my doctors thinks I have intersti tial cystitis as well as hes the one that said I had the chronic pelvic pain. You know I was associating it with my periods and the fact that this all seemed to get at its worst point when I got, when I did tubal ligationa lot of times I just honestly feel like if I could just cut those bands off this pain would end

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202 FRAGMENTATION Fragmented Health Care K8: I always think Im going to fe el better after surgery. You f eel happy when you go in there and think youll wake up and be fine. African American M22 : They said were going to have to send you to have surgery to have your ovary removed. Were going to send you to Memphis to this doctor named Dr. Something and blah, blah, okay. I got up there, he didnt take no kind of x-rays or anything, hes just going by what they told him so he said he would inspect me and told me that it is small and not a big cyst and all that stuff. He said I really dont see no reason to operate so he put me on some birth control pills to shrink it. He still never took no tests or ultrasound on me. I star ted having real bad again so I called him and I told him I can hardly, I said this pain has gotten worse. I said it is even hurting in my vagina. I said something can be done. I kn ow Im in pain. I said something is going on and I dont know what it is but th e last thing he told me was well Ill tell you what, I know coming here hasnt helped you out but there is such a lot in pelvic pain so he sent me here. M40 : They (health care professionals) did not und erstand (the relations hip between abuse and my pain). They were saying that it was in my mind-that my illness was psychosomatic. The depression I had was borderline manic depressive and all these things. When I realized that it wasnt my fault that I didnt do anything to make that happen to me then I didnt have those problems anymore. M40 I have a doctors appointment every week. E ither with Dr. Ling, who is my pelvic pain specialist, I also have a gynecologist. Dr. Ling is not my gyn ecologist. I stopped seeing my rheumatologist. He wants to put me on a medication that I dont want to take. M48 : Nobody knew what was the problem that is w hy I came to Dr. Ling. One doctor thought it was appendicitis but they didnt ta ke it out; they said it was ok ay. They ruled that out. One doctor said irregular bowel syndrome because it cause s so much pain in that area. One time they said it was musclesThey put me on medicationthat didnt help. White American Memphis PKB : You have had pelvic pain for over five years. M17 : They kept diagnosing me well I told you the last time they thought it was gallstones at the time but they kept telling me I had pelvic infl ammation. They never diagnosed me as pelvic disease until I got with Dr. Ling abou t five years ago, four years maybe. PKB : When did the gallstone thing start? M17 : I was 22-years-old. PKB : Did they take them out? M17 : Yes maam. I had my gallbladder out. I kept having a lot of that pain stuff going on where my pelvic area, now that Im understanding it, an other doctor, Dr. Show he couldnt decide if there was endometriosis. He ju st didnt know what to do. When I got pregnant I went through

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203 UT because I was a specific cas e, apparently this one doctor I dont even like him, it was a blessing in disguise because I now have the appropriate care that I need. PK : You do have irritable bowel symptoms. M32 : I do. Ive had the upper and lower GI and even had a colonoscopy. I have had all three of those. They didnt necessarily diagnose me with IBS more than you are saying you have these other symptoms and I know its a factor with endometriosis that you ca n get that. Thats basically what its been. PKB : Nausea is with eating and with pain. M32 : For instance yesterday I just took a bite of a wheat sandwich with cheese on it and got severely nauseous. Ive been nauseo us really bad for two days now. PKB : Youve actually had vomiting too. M32 : Oh yeah. PKB : Does Dr. Ling know about that? (the doc tor now treating her for endometriosis) M32 : Im not sure. The vomiting is not as frequent as the nausea and diarrhea. That is more predominant. It can be occasionally on the vom iting I would say its every month. The Zofran they got me on has helped as far as the vomiting. The nausea I took three yesterday, not at the same time but I had three Zofran ye sterday and it still didnt do much White American Knoxville K2 : I started that with an orthopedic doctor and he wanted to give me a steroid epidural but he thought first that I should GYN check that.So I went to my GYN and he didnt find anything and so he sent me to a colorectal doctor; he did a colonoscopy-that came back all right-I had polyp. So he took it out, but I dont think he thought that was what te problem was, so he ordered an MRI and sent me to a neurosurgeon and when I went to the neurosurgeon I went with my MRI pictures in hand and he looked at them a nd said it was not coming from my lumbar and really didnt offer anything. His (neurosurgeon) suggestion was the pain c linic and my doctor at that time didnt, want o throw me to the wolves (h e didnt want me to go that route). So we tried several things; I went on Neuron tin for a while and later saw a specialist. Ive been through all of that. Ive had an EMG, nothing showed up. I had the body scan and nothing showed up. Finally someone on the internet, I kept getting posts from people or females saying you need to look at potential nerve entrapment .l I actually havent been dia gnosed with it but I went on the web site and read some information that they have there and for a long time and from what I read from the other people on the site and their symptoms were much th an mine it felt like. So one girl had sent me some e-mail and went back to getting the coccyx adjusted and she said you need to try to find somebody that deal s, a physical therapist that deal s in womens health or pelvic pain-that was two years ago this past April. I had already had two rounds of physical therapy in and they didnt know much to help my problem. They did ultrasound a nd electrical stimulation and massage and would stretch me and thats it. So when this girl told me this, I thought, and I knew the chiropractor she went to did internal work so I began to search myself and I found Donna and I went to Donna for about six months and I did get a little better at that time, in fact there was one point during that I felt like maybe that feeling that I was having right there at the rectum was going away but there was some little pa rt that just stayed there, you know. Then when Donna went and opened practice for herself I came back to her and we didnt make much progress with my symptoms. I just recently we nt to a GYN and he did the nerve block and it

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204 didnt make any difference. He gave it vaginally right there at the liga ment where there is a nerve there is and Donna and I were just talking about all though I was numb all over I could still feel that, it was like somebody was taking a little marble and ju st bust it right there at your rectum K6 : He (doctor) had given me my prescriptions to take. My other doctor is saying dont take them. What am I supposed to do? He says Im suppos ed to have this particular bacterium. She says that my levels are too high. Im going to tr ust her because shes th e woman who stuck with me through all this, not him who keeps telling me theres nothing wrong. He asked me if I had diarrhea and I said no I havent but if you look at th e list of medications Im on about all of them cause constipation. It could be that. If I was on them I could have diarrhea. K6 : Im mad that Ive had to fight so hard to get good treatment. I mean youre feeling at your worst and you dont have the energy to fight but you have to Doctors care but at the end of the day they dont go home with me so Im just ama zed there are people who call themselves health care providers. Im very angry at the unwillingness of physicians to treat pain. This fear that they are going to get somebody hooked on drugs. Th ere is a huge fear of that and so they do under treat pain and that does not help you get better. I feel like th is is taking my life away from me. K7 : This physical therapy is different in that one thing she said the other places think that youre thigh stops here and so Donna you know who has gone up into the muscles that theres a muscle running from here to here underneath the, around the bottom of, right there, thats probably the culprit of all this for me and I complained of it the whole time but nobody She did some internal massage on that muscle more hands on than a nybody else. Most of the other places theyd take a look to see if you needed adjusting in terms of was something out of whack and then about 15 minutes of some sort of soft tissue massage Usually you were on the hip and down the side here and like I say occasionally ri ght in here but no further up pr obably than right there. I had exercises to do. Fragmented Bodies White American Knoxville K9 : Interstitial cystitis causes the bladder pain. It just came out of the blue as far as I can tell. I used to drink a lot of coffee and Im sure that I ate all those other things, acidic things that were irritating (to the bladder). It just hit me like a bolt out of the blue--kno cked me off my feet. I have burning pain in my vagina; I dont know what causes that. K8 : (Regarding pain descriptors ) It depends on when, you know what I mean. Throbbing I would say thats mild. That happe ns after the shooting pain. The IC flare is Sharp, no other word to describe it. Cramping obviously is severe. Gnawing is mild. Aching is constant, all the day all the time. Im pretty tender most of the time. It does make me throw up sometimes too. K10 : Well my urethra was really inflamed. She does work on that. It has a tendency to want to stay inflamed. Mine I feel like it is more my urethra than it is my bladder. When you try to catch yourself, it just doesn t want to go through it

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205 White American-Memphis M39 : We now know the reason was my uterus was hi tting continuously my intestines. They did the gallbladder surgery for it...My bile duct was bl ockedThe pain was worse. Nine days after that surgery I was bedridden. M43 : I had an ovarian cyst that had gotten so bi g it had pushed my ovary back into my kidney. The doctor went in there to take my ovaries out I was all filled up with adhesions. She told my husband she wouldnt be able to do surgery on me. I asked her what it was like and she said it was like someone had thrown a can of latex paint in there. African American-Memphis M40 : scar was stationary. It wouldn t move. Everything from here was just stuck. Thats where Deanne came in. We pulled and st retched and then she did the electrical stim ulation therapy and the apparatus on the inside which is a cross and everything. We got things to moving in there because I felt like something was stuck. I always to ld Dr. Ling I think my bladder is stuck inside. It feels like something is stuck. We moved things around and everything, pulling, stretching and exercising and all that M40 : Sitting on chairs with no pa d causes extreme pain and I th ink that has to do with the osteoarthritis pubis. Sitting on a chair and that make s the vaginal pain worse. Its a separate pain but because its a very hard pain they kind of mesh. Does that make any sense? Fragmented Self / Alienation from Self and Others Pain Mexican American-Memphis M7 : I try to (appear happy a nd upbeat) at work. I try real ly hardAlmost too hard sometimes White American-Memphis M19 : Its like my body says stop -you take care of yourself. M23 : It (the pain) does whatever it wants to! African American-Memphis M27 : I might have ignored it more than I s hould have. (While discussing have painful intercourse for 17 years of marriag e and painful urination since a bl adder infection at age 13) African American Memphis

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206 M27 : Pain is crucial sometimes. Im painful some times. I just dont wa nt to be bothered PKB : You just dont want to be bothered. Im ha ving a hard time imaging you saying just dont bother me. Do you ever actually do that? M27: I think it. PKB : So you feel it in your mind but you giggle and keep going, right?! M27 : Oh my gosh, I just leave it alone I guess. I dont really know. I guess its hard for me to sit down and not do it. Im scared if I dont do it, it wont get done. I gue ss I kind of push it back. Ive learned that. White American-Knoxville K8: There are two different parts of my life, there is a part where I can be in pain every day and I feel kind of you know when I talk to somebody Im limited and then when there is a lot of pain when Im flared up, thats the word Im going to use when I have an episode of having pains and that just seems to be like more and more freque nt recently. Its rea lly taking up a significant part, like I feel like I lost yest erday. Yesterday I didnt do anything. I cant even read because I feel loopy. It just sucks. I wish today was Wednesday but so I mean as far as thats like if Im in a lot of pain I wont be able to climb any stairs or do anything K8 : In some ways I feel like I c ontrol my pain like I can take me dicine to make it feel better when it gets really bad and I can try to do all my exercises so thats controlling it but this morning I still feel like it controls me Emotions White American-Memphis M17 : I pull together; I have to be the strong one my mother tes tified for her father in her mothers murder...she is never st rong; I get tired of al ways being the strong one; I only had my father to be the strong one. I act like Im so me tough girl and Id really like to just lay down maybe for 2 weeks M32 : I kind of separate depression and emotional. Th ey are separate. I have always pretty much been a happy person but I say the only time I get really emotional is when Im just not feeling right and I know Im not. I was like that about three weeks ago a nd I totally went off on one of my friends and Im not the type of person who does that. Ive had what my mother calls communist moments. When I was 17 maybe I came home and she had cleaned up my room PK : You called your mother a communist when you were upset once. M32 : Its like an out of body experience that I have no control over. Thats when they finally diagnosed me with PMDD along with the endometri osis and everything else and they put me on the combination of Prozac and Wellbut rin to kind of calm things down. M35 :Emotions, I can take it, I can do that thing where you step outside and say you shouldnt feel this way, you should understand thisThats why I write, my writing is cathartic. I do

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207 write. I have actually managed in the last thre e months to write two poems about it which actually my husband says he refuses to read them because he says it is something sad and my poetry is very heart felt and it is very emotional and its obvious to anybody who reads it that it is very emotional but he (my husband) refu ses to read it which makes me mad. White American-Knoxville K10 : Im not a crier so for me to cry its a bi g deal, like todaybut it did feel better. Fragmenting to Cope White American-Winchester W1: : I try to get my mind off of it, thats what I ve found works the best is to either, often times I dont do the right thing though. I wi ll just keep doing like, I should relax but I dont. I try to just work through it. If I can distract myself that works best, ge t my mind off of it. But really sometimes thats not very smart., because if its really getting bad, I just need to stop what Im doing and rest. Its like sitting at the comput er, I will sit there longer by putting it out of mind, but I should stop and get up. White American-Knoxville K14 : One of therapists I saw for the depression di d a good job to help with relaxation, breathing techniques, stuff like that. Especi ally at night when Im able to lay down and relax and get ready to go to sleep I can do most of th at. It still hurts me during the da y; just try to get your mind off of it. You dont have a lot of time to sit th ere and count to 100 or stuff like that. K14 : To me taking care of myself is gett ing up in the morning and making myself look good. I have an attitude where if I make myself look goo d then yall think I feel good. That to me is taking care of myself, going in my room, closing my door, doing stuff by myself that kind of thing K7 : I smoked off and on since I was in college wh en I was in the masters program. Probably three years off and on. I was a social smoker and my sisters smoke. We went on sisters trips which we did a lot. When I retired I decided that I was thinking more about it and didnt like it so I just quit. Once I decided, its just a matte r of time for me. Being in a certain category I figure I didnt do heroin, I didnt do other stuff and its around so I allow myself other pleasures. I let myself feel free to breathe or do things. Part of what I liked too is just having that time to myself. Most of the time if I was over my sist ers I did do it myself, not around my husband. It was giving myself the liberty to do. I hid it-I did it for relaxation; I would normally consider it frivolous. K4 : The pain is probably more intense but to me I can tolerate the pain pretty well. I think the worst pain I had was when I lost the baby and th at was just a lot of pain. ..Im kind of, I dont know, just to me pain is not real severeI dont li ke to think about itI I grew up with a mom that was a pain sharer and to me I thought she was a hypochondriac so I try not to focus on

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208 things.She had a lot of things going on with her. She died of ovarian cancerShe had diabetes and a lot of other stuff that was going on and thats all you hear d was pain all your life and I think it just kind of overwhelmed us cause that was a majority of our life. I try not to focus on that because I know there are more important thi ngs to do No I try to just ignore it.. I know a lot of people focus on their pain and it probably is worse than what I think it is I just try not to focus on it and I dont know if its because of my background White American-Memphis. M32 : Id rather not be around people when I get in th at state and I just had a really bad moment two weeks ago with my friend, Brian. I just totall y went off on him. Most of my friends and family know, they can tell Im really in that st ate because Im not really a person that complains or gets upset or anything like that. Im pretty even keel so when Im like that they know. They say you need to be alone African American-Memphis M21 : Being still and closing my eyes and trying to mediate, trying to do mind over matter before I resort to medicationCause I ha te feeling like Im a walking drugstore Social Alienation African American-Memphis PK : What about your family, do they have any idea what causes it? M36 : My mom and grandma I dont discuss it with them. PK : What about your kids, do they know you have trouble? M36 : No. White American-Memphis M39 : I think the most frustrating thing does not know how to verbali ze it because it was so internal. M38 : Its been frustrating and its been a learning experience and its made me more thorough in my health and my care and my knowledge of me I guess. I have a lot of time on my hands. I have a lot of times to explore myself and really think and get to know myself on a more intimate level which is definitely part of th e at a better place than a year ago White American-Knoxville K6 : When I was trying to just get diagnoses I was never there, I was always at the doctor trying to find out what was going on, wasnt available to people. Theres a whole spiritual side that my faith has stayed pretty strong thr ough all this but there is the whole spiritual side of excuse me God you know whats going on and why am I not getting better. How do you counsel somebody that comes in to your office when you feel like you dont have control of yourself? Its really interfered with all of that.

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209 K6 : I feel (socially) undependable, unreliable and that is not me. Thats one of the most frustrating things I want to be somebody that people can count on an d I dont feel like Ive been that. I dont do as many social type things as I used to or they are much more last minute types of things. K6 : I feel (socially) undependable, unreliable and that is not me. Thats one of the most frustrating things I want to be somebody that people can count on an d I dont feel like Ive been that. I dont do as many social type things as I used to or they are much more last minute types of things. K8 : I just feel like Ive always been a really social person. I think social connections and emotional connections are really, really important Even though my family and my friends are really great, I feel like totally alone. No one can possibly understand. Not that they dont understand, like it makes me feel selfish to say this but I just feel like blocked off and limited from everybody. Like I put up a wall and I cant explain how Im feeling and I dont want to because it makes me weak. I dont feel as connected to anybody. K8 : I loved being an only child. Th e one thing I would like want to warn your daughter about is when you do ever get sick, you tend to isolate yourself. Im good at being by myself. It wasnt necessarily the best thing for me. I stopped callin g all my friends. It doesnt seem abnormal to be alone. No one from college knows Im sick ex cept for one person. People in my graduate program know because my stepsister told them and that made me really mad. I didnt want anybody to know. I was missing a lot of school obvious ly. I had surgery right in the middle of the semester. A couple people knew just having surg ery but I just like always blew it off, no biggy. My stepsister told them everything and it made me mad K6 : Oh yeah I pray a lot. I dont know that it has helpedMy prayer lately has been God are you still there? K10 : I thought I was going to die, and I was really ready, not afraid, and just ready It was in the beginning when I was in the house and nobody understood. I was in the dark. My husband would come home and I couldnt make him understa nd. They dilated my eyes and I couldnt see and cant stand light. I couldnt r ead and watch TV. I couldnt work K6 : Ive just learned that, Im the one who has to live with this body Doctors care but at the end of the day they dont go home with me K16 : I find like I dont want to go out to the movies as much to be with people, Im kind of right now not hibernating but kind of rech arging myself. I do that as kind of a safe retreat. If I can just relax and be okay then, I guess Im finding myself doing less of that now. Im working on it.; Its not like I wont go but if my husband says do you want to do something tonight? Im like no. I just like want to stay home tonight. Hes like su re and we do. If he really wants to go somewhere Ill go with him.

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210 PRODUCTIVITY OVER PAIN Why and how do they work so hard while in so much pain? Is it resistance as described by Martin, resistan ce embodied or is it resolve to establish and maintain their worth in the only socially a cceptable ways they knowstaying productive at home and at work and fulfilling their sexual obligations. Psychological trait of dissociation, considered maladaptive, may contribute to abil ity to remain high functioning despite extreme pain Work outside the Home Mexican American M7 : Yes. The fear of losing this house was greater than the pain I was going through. Work was the only value I had. Maybe thats all I know. I mean my sister and I have been working, I was 10 and she was 12. My dad opened a store up so that is all we known. ..My dad owned a restaurantSo we would alternate days, we work ed every other day with my father from the time we would get out of school to like 9 or 10oclock at night. So weve been working, you know... from the age of 10. M7 : it seems like at night because I just don t have busy-ness going around me it feels like everything kind of settles and it hurts a lot more and then on the weekend because Im not as active as I am during the week. So it seems like on the weekend or when Im at home it seems to be much worse... You know during the weekend I rest all night. And during the week you know at least I have something to take up my time which is work African American women M6: I still work despite it; I go to work no matter; Id stay at work even if I had to stay in a wheelchair. M22 : I have to climb stairs at wo rk, I do it, but it hurts a lot. PK : How would you say pelvic pain, has changed your lif e at home, at work or out socializing? M36: It hasnt. M48 : I dont just dwell on it. It hurts and I conti nue to do things. Its alright one way or the otherI just keep going. White American-Memphis M10 : At work, its really changed it because I can t pick up the kids as much as I would like and I feel like I am neglecting my job Im there every day but I stil l feel like Im neglecting. M10 : Im not able to sleep at night because of th e painthe assistant director is off again (at work) and I have been trying to open and close and I think that may be another reason I am

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211 hurting morethen not being able to sleep at night makes it worse and then having two boys with ballgames and everything else, you know, it is tough at night. M10 : But my husband is like, we got to get you fixe d because youre just i rritable and all this stuff. Youre working so much. M16 : So the week before I actually got married they had to wheel me into the office (because of pain). M34 : Ive had to miss several meetings just because of the pain. Ive had to put a lot of things off on my vice president. My kids have had to go to my parents house a lot because of it. PK: And then you missed some work too. M34 : I missed a lot of work. PK : Did that put your job in jeopardy at all? Pt: It did not put it in jeopardy but it made me feel worse and wo rse just because I did not want to miss. M19 : Im currently not working be cause of it; I used to work 10-15 hours a day. Ive never not worked since I was 15; I didnt realize until I was off that you cant get well when you are so busyIts like my body says st op-you take care of yourself. M38 : This was the first time in my entire life that I havent worked. I havent worked, not because I didnt want to, but because I coul dnt walk. I couldnt sit. It was horrible Im recently back at work; Im doing it (working) now because I need the income and it makes me feel worthwhile. White American-Knoxville K1 : I then packed myself in ice to be able to go to work the next day and thats when he (exhusband) said you got to quit it. Y ou are suffering far too much. PKB : the most stressful thing in your life on an average day? K4 : Probably not working probably is the thing I feel lik e I cannot control like I used to be, Im not as busy. I always thought Id want to be home, but not full timeMy time management is not as good as it used to be. K5 : Because of the pelvic problems. Ive lost ma ny jobs. I got part-time jobs in between for a little extra money and I lost them and its been due to the periods, to the pain, to just overall wellness and then because during that time Im getting my period Im not capable of doing much of anything and it may not be a whole nine days, it may just be the first three days or the first four days or the first two da ys, just depending on the period bu t I mean it literally you dont know, you dont know. Ive had to call them saying Im not coming in today, Im not coming in todayI am frustratedI want to be able to do part-time. Im going out for substitute teacher in August I thought that was something that I could, something that would work because you have the capability of saying well when Im having that kind of period to say no I cant do that.

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212 K6 : I dont want my life to be al l about this and for the past tw o years my life has been going to doctors, therapists, hospitals, having tests and I want to be able to work again and participate in society and life and not just sit in doctor waiting rooms and know which ones have the best magazines. The pain clinic has terrible magazi nesI can tell people who has the best magazines and which ones look dirty, who is going to make you wait an hour and a half, who will see you on time. I dont want to know that. I want to be, I worked really hard to get my education and to pursue a certain career path and right now I cant do that. K8 I would push myself to the limit then Id be in excruciating pain for two days then Id be depressed. I felt like I failed or something K10 : went from A++ personality. I could do everyt hing I ever thought I wanted to do I would do it and could do it and did do it. I went from runni ng a business that I owned and I started to have to pay people to do it all and th ats where I am still today. I dont do any of the physical work. Its all my brain because I cant sit at the computer. I cant si t long periods of time. I cant physically go out and see my stores. They dont see me. They have to trust my voice on the phone. It had changed my family as I told you before. There is nothing the same about me except who my inner core is and thats a positiv e researching, I will sti ll try to do it with the acceptance I know I cant. I have enormous limitations. Work at HomeKeeping the home fires burningwhile it hurts Im like every other woman you know. White American-Memphis M18: I can either take medicine or get it fixed or I can just shut up and go on. Im like every other woman you know. I get up at 4:45 and st art exercising. I get my house cleaning done before I come to work. I do all those things so I have to get up in the morning so thats why I think Im so tired at night.. Literally if I fi nish the kitchen at 8 oclock and sit down in the recliner to watch TV Im asleep at 8:05 and then Ill get up at 10 and go get in the bed and sleep to maybe until 12 or 1 then I wake up and not get up to go to the bathroom or anything just wake up and toss and turn for a few minutes then go back to sleep. Im usually backed up about 2:30 or 3:00 then 4:30. M10 : I cook dinner when we are home at night and we cant eat out, I do the cooking and I will clean the kitchen and the housework and he alwa ys helps me with the laundry and my boys do tooI cannot push the lawn mow, thats just out of the question. But I do help like bag the grass. I did mulch my flower beds last week and I should have never done that. You know I do try, I would say I think that to a halfway point M17 : It helps me if I keep myself going; I get panic attacks and if I keep going it is better. M23 : I keep it going; the pain hasnt changed m lifestyle except for doctor appointments and some limits to playing with my kids. M24 : I still do everything I always did, doing it all just means Ill have less ease; exercising is the only thing I had to stop because it hurt t oo badly. (gave up cardio training on a glider)

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213 M24 : I rode my riding lawnmower yesterday for 5 hours yesterday. (This woman is 71 years old, retired) PKB : Do you feel that pain while you are riding or is that afterwards? M24 : Well, yesterday it was when I was ridi ng, then it went away, its not something thats going to kill me, it just hurts. M37 : I like to clean house. I like to put th ings in order. I like things in order M38 : I dont want to be (limited in what I can do). Im the kind of person that will push myself to do what I want to do even if it means Im going to pay for it later. I don t like being inactive. I like contributing. My boyf riend lives with me and we have a household. PKB : You have not been feeling good and still had all the responsibilities for your home? M38: It is still okay because he buys the groc eries and it is a way for me, like cleaning up and doing things, that are my way of coping and thats one of my outlets b ecause it makes me feel productive. I can go at my own pa ce. If Im hurting I can rest. It doesnt require a lot of heavy strenuous exertionIts catha rtic for me to take care of the home and also as a woman I know about the womens lib stuff and Im all for it exce pt I really need a bra because my boobs are too big to not have one but I like it s that nurturing side of me. I like doing the taking care of (the home) as most women do but not to the extent where my needs get excluded and that is sometimes a point of contenti on. (In our relationship) M43 : Im not going to put my life on hold because Im in pain. I watched my mother do that I think and Im not going to do that. There is too much living to do then just waddle around, thats how I feel anyway .. I just have mountains I want to climb. M? : Ive been really lu cky. My husband has been very s upportive. My daughter is very helpful. PKB : Shes 14? M?; Shes 14. She never says to me or you know ne ver gets angry that I cant go to the movies with her or that wed all love to eat out and maybe those two will go. Like tomorrow for instance theyre going to Graceland and I wont go b ecause I dont want to be a burden to them. I want them to go and have fun and not have to d eal with can mom sit here or can mom sit there, oh her back hurts. PKB : How much fun would that be for you? Mexican American-Memphis M7 : I feel like a burden (to my fami ly/socially) because of the pain.

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214 African American M21 : It limits what I can dolike washing a sink full of dishes or standing will cause a problems; I have to put it off or not do it or modify what Im doing; it takes more time to do everything White American-Knoxville K1 : It seems to be the hardest thing is the hous e cleaning. My little boy helps me you know. If Im really bad or dont feel like, come and pull these out and bring them in here and Ill fold them up. He helps me. K4 : If I could change anything about my daily responsibilities it would Be to keep my house up more with more orga nization one of my form er employers said one time that that would be my downfall because I was too organized K13 : its funny though you think that when the ki ds are gone and stuff like that I mean you think that you would do something to play and all that, are you kidding Im like lets go home, lets get this house cleaned while they are not here its so much easier to do. Thats just the way my brain operates. Its very rare that I just do someth ing I wont say frivolous because its not frivolous but just something you know. K11 : I pay much more attention to getting more sleep and Im tr ying to eat healthy. Im trying to do things that are fun like sometimes I pull out a box of crayons, havi ng fun, just doing those things Im giving myself permission to do things th at are fun. A lot of wh at I do right now is not fun. Im trying to make sure its okay to have fun. I had fun as a kid; I played. I think that somewhere though I lost permission to do that. Im not sure if it was pressure I put on myself, I dont know how that happened but became more seri ousI think that if we would all sit down and do some of those things like finger paint or play with Play-Doh or whatever every once in a while it would be a better world because we tend to make everything very serious. Im not trying to make light of things that are really serious but I just think we can calm down Sexual Relationships-Doing it when it hurts Its almost bad enough where you dont want to keep on. African American M22 : I would like to have sex again; I want somethi ng stablealso a little afra id of the pain.(last intercourse was three months prior to the inte rview; she experienced pain intensity of 10/10 with intercourse that lasted several hours afterwards PKB : Its worse with intercourse, worse with your pe riod. It lasts for a wh ile after your period is over and it goes up to a 10/10. M27 : Yes maam. I can take something and kind of keep pushing. I try to go on and pretend its not there... I have vaginal pain but no t burning anymore, that is better. White American-Memphis

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215 M17 : Im fearful of not being able to pleasure him during sex M55 : It was funny because I have an ex-cousin b ecause it was my first husbands cousin who was gynecologist and he was one of those peopl e that I knew well enough that I could talk o about you know sexual problems or whatever. He said what you have is called dyspareunia and he said the only thing you can do is have your husband come in and well whack it off and youll be fine. Theres a joke among docto rs that its better to have dys pareunia than have no pareunia at all. M28 : Intercourse is complicated. PKB : Has that gotten any better? M28 : No. PKB : That hasnt changed at all with any of this. M28 : Its more painful sometimes. I don t want to because its painful. PKB : How is that going? M28 : Dr. Ling prescribed Tylenol with codeine to take afterwards. PKB : Do you feel really tense at the start like it s hard to even get started because of pain? M28 : Yes maam. Is that normal? PKB : It happens a lot but it is not normal. I mean its not what we want you to be going through normally. A lot of women experience that. Prev iously you didnt have a problem right? There were times in your life that it didnt hurt. PKB : It just wasnt as bad as it is now. PK : I understand you are still having pain with in tercourse, and you are s till having intercourse. After intercourse how long does the pain last, hours or days? M34 : At least one to two days burning, hurting. M35 : Theres no burning pain with intercourse at al l. The real pain is after intercourse. 55: I had a lot of problems before I had my hys terectomy, it hurt to have sex, not to have sexAfter the hysterectomy, it didnt hurt to have sex anymore but yet I still occasionally would get that particular pain. White American-Knoxville K1 : When I have intercourse that builds my pain le vel, I have a little burning and it gets better but theres nothing really in it for me, why do it you know. Then after then the next day the next day its worse and the next day burning, this was before surgery, I knew Id be in the bed like a 7, but now I dont have sex so I don t have that pain; the physical therapist said not to do that (sex) right now K7 : In terms of sexual activities, I think every time we set about to it I think my husband i in the back of his mind is thinking You dont want to hurt her. So it has change d little bit, not for the best

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216 K14 : I was having pain with sexual arousal that seems to be muscle pain. Its amazing what shes (the physical therapist) been doing. I didnt realize that I was having that much pain from that. It has helped a lot the dull pain. The intercou rse pain is not better ye t, just the arousal pain. The arousal pain is probably about a 9. Its almost bad enough where you dont want to keep on. Its very bothersome. The pain during intercourse ,it kind of eases off. Once I get past that initial arousal pain it kind of goes to about a 6. The pain afterwards I just feel really I guess sore. The level 6 kind of stays afterwards K15 : the sex we couldnt have without it being very painful. We had it but it was uncomfortable. I think when you have a healthy sexual relationship with your husband I think that in and of itself thats been relaxing, enjoyabl e, stress relieving activity that if that happened and everything is right with that th en the stress, even if you have st ress at work, is not as severe. If you have stress somewhere else its not as se vere because theres that release when you have been all that other stu ff youre working on I think. Its not that everythi ng revolves around that because my husband and I talk about that. Thats not what our relationship is based on but I also know that in a healthy relationshi p like that and like weve had up until that it wasnt tense or tight. Avoiding Sex-Pain and Indifference African American M21 : He (my husband) gets irritated but he tries to act concerned PKB : You think it is an act? M21 : Yes, I really do but everyday hes like I just worry about you...I think he is actually angry, especially because I do not want to have se x because its painful. He gets really angry with meHe gets on my nerves M21 : Being a wife is the most stressful thing in my lie because my husband hates the pain and then trying to be that wife thats fantastic and cu ddle and all that stuff, that affects (me) because I dont want him touching me but I try bit I hate it (sex). With pain I hate it more. (said with emphasis) I wish if I didnt have the pain. I would be able to do it enough just to please him but I wouldnt care if I didnt do it The pain makes me not want to have sex; pelvic pain stopped me from being able to take care of my husband. M6 : Sex is the most stressful thing (in my life); I will pick an argumen t with my husband to avoid it; Im non-involved during sex; if we go slowly with music it helps me relax M40 : I never liked sex. It always hurt. I was never comfortable because it was wrong. Id think this is dreadfully wrong. PKB : Were you taught that or you think it was a feeling from these experiences? M40: Both. PK : Of course if you were taught that it was wrong, then have to hide it, I was just wondering if there was someone in yourself freeing you up?

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217 M40 : A Christian auntie, old school C hurch of God in Christ Christ ian so she said this is wrong, that is wrong, so I lost my boyfriends a lot b ecause when they asked me for sexual favors I quit them. A couple of boys that I rea lly liked one of them raped me. PK : How old were you with that? M40 : 15 M40 : In I learned that it (Marijuana) was he lpful and with sleeping with my husband it made it less painful. So my girlfriend showed me ho w to do it and everything so then Id come home and I wouldnt bleed or any of that; usually if I had intercourse with my husband. I would just tighten up and he couldnt get in or Id tighten up and he couldnt get out. PK : So you would use marijuana to relax? M40 : Yeah. It would make me less, Im not ashame d of it because this is something that weve talked about for years. I am so glad we can have intercourse now and I dont have to go to bed with that yearning desire. PK : Despite the fact it hurts to have intercourse, and you never li ked it, youve always desired it? M40 : No I never liked intercourse. PK : You said going to bed with this yearning and desire. M40 : Because I wanted my husbands affection. White American-Memphis M39 : At home my husband is very understand ing; it limited our phys ical intimacy 100%. M48 : It has changed with my husband. We dont do things. I cant stand nobody to lay on this side or that side. This side here is limited to just me putti ng my leg over, its just irritable. You cant put any kind of pre ssure to this side. White American-Knoxville K10 : My husband is wonderful. Hes an ange l. We havent had sex for two years. PK : How does he handle that? K10 : Horribly K10 : The last time I had sex it stayed at a 10 for two or three days. I want to be able to have sex with my husband again Will you help me with my sex problem? K4 : We never have intercourse a lot, not as much as we should but its not been a real issue I think my husband and I would be a lot closer if we could ha ve more relations K10 : Im not the same, intercourse wise and its an issue they (doctors) cannot deal with. They choke up on it. This is any kind of doctor. The physical therapist Im seeing now is the first person to address it. SELF-CARE-NON-PR ODUCTIVE TIME Me? No, I take care of other people, Id rather do that PK : Do you feel like you spend much time taking care of yourself each day?

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218 M39 : Me? No, I take care of other people. Id rather do that. The walking Ive done every morning except the last three because I was on a deadline. My mother-in-law her husband died and shes a widow so Im her honey do list person. M52 : Pt: Um, doing things for myself pretty much I am just sitting down and watching a movie or something because Im hurtingOtherwise Im running errands. We have five dogs and six cats and thats a nice load, working for my mom and stuff like that. My best friend is always busy. My boyfriend didnt even get me a birthda y card this year. He was in the dog house for one week. PKB : What kind of things do you do for yourself? K4 : Um. PK : So zero time spent on self. K4 : Probably not, yeah maybe 30 mi nutes at night taking a bath. PK : And the reason for this is? K4 : I dont know, I just ge t doing other things. PK : Okay and the type of things that other people do for you on an average day. K4 : My husband does the laundry and he ll help do dishes and stuff like that and he helps with things like the vacuum. PK : Do you do things for yourself on a regular basis? M37 : No. It sounds like youre not doing anything I have trie d to do more for myself. Ive been very uncomfortable with it. Ive been trying to read M19 : Im currently not working be cause of it; I used to work 10-15 hours a day. Ive never not worked since I was 15; I didnt realize until I was off that you cant get well when you are so busyIts like my body says st op-you take care of yourself. K8 : Sometimes I feel selfish. I feel selfish or guilty. I think guilt is something that definitely plays into my stress level. I feel guilty because my dad has to take me to treatment every week and that hes going to have to take a couple days off for my surgery. Sexuality, Sexual Attitudes and Behaviors Sex, Abuse and AssaultIsNormal? M8 : I thought all girls were messed with growing up; werent you? (white woman) M6 : I think most black women we re tampered with as kids. M1 : Something happened to me when I was thre e-years old, what I dont know. All I know is it was my moms friend and all she told me that se xually abused me.She wont tell me what it is. She wont tell me who, I mean I kno w who it is but its all I know. Grandmother : Im Christian, if Id have known that Id have killed him. He really kept that quiet M1 : It wasthat guy she dated right after dad and her got a divorceActually my mom didnt know that I knew nothing about it. Actually I hear d my mom telling to my grandma about it, my

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219 other grandma...I brought it up to her one day and she just, she dont want me to know about it right now because of ev erything thats going on. Grand mom: But you need to know so that they can help you. M1: I mean it dont bother me. I dont remember it. Grandmom: But deep seeded into your brain, dont it happen? M32 : Pt: My biological father was abusive emoti onally and sometimes physically and my mom divorced him when I was very young. She was married to him for 12 years. She experienced that as well. PK : She divorced him when you were 12? M32 : They were married for 12 years. I havent had a relationship with him and even when I was younger I had to legally go see him for years but I havent seen him since I was 17 or 18 maybe. PKB : Was he the one who did the sexual abuse too? M32 : No that was one of his family members. Thats really something that I dealt with at quite a young age because Ive seen women that go through, I mean one out of three women are abused. Ive seen a lot of women go through this and Ive s een how they allow it to affect their lives. I dont believe its something that I ever wanted to affect my life because it wasnt my fault. It was nothing that I did. I dealt with the esteem issues and all that. PK : Okay so some history of abuse. M37 : From what I hear its from my uncle, from other people. Supposedly I dealt with it. PK : Did you have therapy? M37 : No. PK : Just dealt with it on your own? M37 : Yes. PK : How old were you? M37 : I dont know how old. I know what house I lived in which means I was less than 10-yearsold. PK: OK. M37 : My cousin was the source and I didn t like him for a lot of years but PK : One time or multiple? M37 : Twice. Once he exposed himself and once touching. PK : It happens too often. M37 : My dad somewhat had a temper and he kicked me one time and that really has bothered me off and on a lotThe issue is that I have a flash temper and I dont want to be like himAnd my brother has a flash temper and my cousin and my uncle and my dad. Its a family history of this temper and that I get anxious when I get that way. I dont get that way oftenI have had some counseling with my children and how I dealt with them because I also had a flash temper when they were young but I think I got over that too, I thought I did. My biggest problem now is just students when they push me sometimes I have to go outside and leave, my administrator got mad at me last year and I jumped all over him and embarrassed myself like that. So maybe I should (get more counseling) I dont know. M40 : Yes. I found out it had a lot to do w ith all the molestation and the rapes. PK : So youve done quite a bit of th erapy to deal with that?

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220 M40 : Yes, I had to. I didnt know what was wrong with me. PK : At what point in your life did you do that? M40 : I had a nervous breakdown. My baby was mont hs and I went into the baby blues. My grandmother died the same day. I went into the baby blues. I didnt know what was wrong with me. PK : How old is your baby now? M40 : That baby is 3, I was 23, PK: This was quite a while ago? M40 : Yes. Ive been institutionalized three times not knowing that it was the molestation and the rapes that was keeping me depressed all the ti me and unable to functi on and not feel good about myself, low self-esteem. Not knowing that this was the source of the problem. I noticed that whenever I did anything and I had my classes I made very good grades, its just that I would stop because I didnt have the confidence in myself. My teachers did so in the middle of study they recommended me for th e jobs anyway all the jobs that I received. I did very well with the jobs. It was just that I didnt have the confidence. PK : You had these things bothering you. M40 : Yes. I thought it was something I did, it had to be to make this happen to me. there were three uncles, they were all uncles, PK : That did it to you? M40 : Yeah. PK : They all had sex with you? M40 : Yes. We were children. We had the full beds so that meant that I was maybe third grade, fourth grade something like that. We then went to the bunkbeds then I had to be pretty young. I dont remember what age. PK : You were very young. Eight to nine. M40 : Eight, nine and ten is when my uncle wa s molesting me so I was younger than that. PK : It came first? M40 : Yes. The two-year-old thing came first because I was wearing yellow training pants. That was my mothers brother. Hes dead now. He di ed. His girlfriend shot him because she said he molested her daughter. He went away with a sm ile on his face actually because he was relieved that she did that. PK : You remember that? M40 : I kept having the dream that somebody was pu tting their hands under my panties and I had the dream and I would always wake up sweating a nd I would always wake up scared. Then one time during the dream I saw the face and after I sa w the face I didnt have the dream anymore. I just remember laying on the sofa with no top on, yellow training panties, I remember they were yellow, and I was laying on the sofa in th e living room. Thats all I remember. PKB : So you were two or three? M40 : I had to be. I was in training pant s. I wet the bed until I was eight It was pretty rough. I know why a lot of my life was sto pped and I couldnt continue on in a lot of things because I nev er felt good about myself M40 :Thats when it was really bad. Thats when he actually penetrate d. I was 11 or 12. I never had a chance to be a virgin. That bothered me. I still had a hymen because when I had my first consensual scared to death sexual experien ce barely penetrated I bl ed all over the bed so

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221 after I got older and I read that was still having a hymen. I never liked sex. It always hurt. I was never comfortable because it was wron g. Id think this is dreadfully wrong M40 : Pt: Im being honest. When I was married be fore my husband stopped sleeping with me, he had a girlfriend. He is a pretty faithful guy so he was faithful to her. After I had the 25-yearold he came in one day and he just tore my clot hes off and he raped me. The day before I had gone to my friends who is now my husband and as ked him if he would do me a favor. So we got in the room and I couldnt do it but we had petted heavily but I co uldnt have intercourse, I just couldnt do it. M51 : I was molested as a child. I think the first time it happened I was about five that I recall. It was actually by my older brother. Hes three year s older than I am. It started out as like a playing doctor type of a thing and it kind of pr ogressed to you know; its come out in later years that he himself might have been raped. He told his first wife that he was actually raped by an uncle who we know is a pedophile. To make a l ong story short he would play games As soon as I got a little bit older, I think I was about nine I woul d say no Im not going to do that anymore. He left me alone but then he went after my younger sister who is five years younger and we found out that she had been very molest ed and maybe even raped for 10 years by him but she would never tell. K6 : It (emotional abuse) is one of those things that I endured from my parents. You know when youre little you think thats normal and what everybody is like. Later on my job a relationship became very abusive toward the end of the position and I got out of there. I did allow it to go on because I had hoped there was potential for it to ge t better so, I stayed, bu t I finally stopped it. K6 : I look back now at these two bo ys in the fourth grade that were allowed to harass all of us (all the girls). Now I can very much say that they sexually harassed us. They stuff like coming up, fourth and fifth grade girls we re starting to wear bras, they would pop our bra straps. They would come up and grab girls from behind and do different things. At the time it was really frustrating when that was going on and I learned some self defe nse moves and got one of them pretty good. He came up from behind me and he got me and I took my elbow like that and I took my head like that back into his face. They woul d grab us, any part of our bodies. That was in 1980, 1981 something, I dont know. People didnt ta lk about sexual harassment of fourth graders then and I see shows like Oprah and stuff and Im going you know thats exactly what they did. My parents knew it was going on and the teachers knew it was going on. I complained. I found out later that the teacher told my mom that she knew I could take care of myself; which I did but I had to resort to violence to get this kid to leave me alone. Now theres a name for it and now I couldnt say what it was but at the time it just wasnt an issue you talked about. Now I know that he was really out of line and my teachers should have stood up for me; my parents too. That whole atmosphere was sexual, part of it I th ink is normal curiosity that starts around that time but it went beyond that. Your daughter better tell you if the boys are bothering her. It is something I just thought about recently because I was watching just the other day on a show they were talking about kids who had been bullied and harassed and stuff and about how if these were actions that were taking place when we were adu lts they would be harassment. I thought this kid that came up and was always putting his hands on me, grabbing me from behind, saying things. Im like you know, because we were in the fourth grade it was kids being kids.

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222 K8 : Not rapes, just forcing sexual act; this guy got kicked off campus actually. It was my freshman year. He was harassing me afterwards like stalking me kind of and my RA, I just turned 18, RA figured out what was going on a nd took me through the whole process. I never had to see him again. Years later I found out that all of this one group of people this guy was with them and everyone there knew. Also, I have vague memories of a doctor that I think was like inappropriate and I found out later ; wh en I became a camp counselor at the Jewish Community Center my other friends used to call him Dr. Lust Chester because everyone felt the same way about him. He was my pediatrician. My step mom worked with him so she just didnt want to hear it. I dont have memories of it being bad I just have memories of being very uncomfortable. I dont have memories of being touched or anything like that. I do remember him looking at my privates when I had the flu or something and I was just like its not necessary buddy. Thats never really been a big deal, I know it sounds weird but it real ly hasnt. A lot of my friends had the same experience. Id like to see him shut down. He lives across the street from my parents. I told my stepmother about and I stopped going to him pretty quickly K10 : Somebody showed me their body at UT when I was about 20. A telephone man and I just went oh. I was a student. There was a telephone guy, he was asking for dire ctions and stupid me kept saying what, what and ge tting closer then I saw it. He was in his truck. K13 : When I was a kid there was some pervert who would flash us on the way to school and the policemen knew him and knew where it happened a nd all this; I forgot a bout him. We had all kinds of names for him. There were five of us and we all walked to school at the same time. K15 : My dad was pretty abusive, ph ysically and just always him al ways feeling us and stuff; I was 7, 8, 9, probably to 12 years old th en I lived with my grandparents My mom didnt know what he was doing he was abusive to her. K16 : When I was in high school I guess I was deve loped pretty well so I had old men all the time try to get me to go out to dinner with them, tr y to get me to spend the night in a hotel. This was in a farming community in the Mid-West.. It happened pr obably about 20 times during the time I was in high school that I was kind of like what am I doing wrong. I think it was Id run a lot of errands for my mom and so Id be out by myself instead of with somebody so I think that may have been. Thats the closest Ive come to being scared. One time some man put his hand on his arm to try to lead me so mewhere and I jerked it and said do not ever do that again and walked off. I was kind of shaken. Other than that fortunately it didn t go any further. S ex: Doing It When It Hurts Its almost bad enough where you dont want to keep onK14 -Intercourse is complicated-M28 M55 : It was funny because I have an ex-cousin b ecause it was my first husbands cousin who was gynecologist and he was one of those peopl e that I knew well enough that I could talk o about you know sexual problems or whatever. He said what you have is called dyspareunia and

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223 he said the only thing you can do is have your husband come in and well whack it off and youll be fine. Theres a joke among docto rs that its better to have dys pareunia than have no pareunia at all. Something like that. At least he actually put a name on what the problem was. Every time I would have sex it didnt actually hurt that much during but afterwards my side would hurt so badly. M21 : Being a wife is the most stressful thing in my lie because my husband hates the pain and then trying to be that wife thats fantastic and cu ddle and all that stuff, that affects (me) because I dont want him touching me I try but I hate it (sex). With pain I hate it more (said with emphasis) I wish if I didnt have the pain. I would be able to do it enough just to please him but I wouldnt care if I didnt do it The pain makes me not want to have sex; pelvic pain stopped me from being able to take care of my husband. M6 : Sex is the most stressful thing (in my life); I will pick an argumen t with my husband to avoid it; Im non-involved during sex (because of th e pain); if we go slow ly with music it helps me relax M17 : Im fearful of not being able to pleasure him during sex M22 : I would like to have sex again; I want so mething stablealso a little afraid of the pain.(note: last intercourse was three months prior to the in terview; she experienced pain intensity of 10/10 with intercourse that lasted several hours afterwards) M28 : Intercourse is complicated. PKB : Has that gotten any better? M28 : No. PKB : That hasnt changed at all with any of this. M28 : Its more painful sometimes. I don t want to because its painful. PKB : How is that going? M28 : Dr. Ling prescribed Tylenol with codeine to take afterwards. PKB : Do you feel really tense at the start like it s hard to even get started because of pain? M28 : Yes maam. Is that normal? PKB : It happens a lot but it is not normal. I mean its not what we want you to be going through normally. A lot of women experience that. Prev iously you didnt have a problem right? There were times in your life that it didnt hurt. PKB : It just wasnt as bad as it is now. PK : You are having pain with intercourse still, thats no good, and when you lift. After intercourse how long does the pa in last, hours or days? M34 : At least one to two days burning, hurting. PK : And youve done the Valium vaginally right and that gave you relief? M35 : That has helped. Its completely nixed my sex life. PK : The Valium or the pain? M35 : The Valium and the pain

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224 M35 :Theres no burning pain with in tercourse at all. Theres r eally during intercourse no real pain its after intercourse. M39 : At home my husband is very understand ing. It limited our physical intimacy 100%. M40 : I never liked sex. It always hurt. I was never comfortable because it was wrong. Id think this is dreadfully wrong. PKB : Were you taught that or you think it was a feeling from these experiences? M40 : Both. PK : Of course if you were taught that it was wrong, then have to hide it, I was just wondering if there was someone in yourself freeing you up? M40 : A Christian auntie, old school C hurch of God in Christ Christ ian so she said this is wrong, that is wrong, so I lost my boyfriends a lot b ecause when they asked me for sexual favors I quit them. A couple of boys that I rea lly liked one of them raped me. PK: How old were you with that? M40 : 15 M40 : In I learned that it (Marijuana) was he lpful and with sleeping with my husband it made it less painful. So my girlfriend showed me ho w to do it and everything so then Id come home and I wouldnt bleed or any of that; usually if I had intercourse with my husband. I would just tighten up and he couldnt get in or Id tighten up and he couldnt get out. PK : So you would use marijuana to relax? M40 : Yeah. It would make me less, Im not ashame d of it because this is something that weve talked about for years. After my hysterectomy in my husb and stopped sleeping with me so we didnt have intercourse for 15, this will be the 16th year. We just started again. M40 : Three years it was just gr eat then after the hysterectomy he (husband) stopped sleeping with me. Dr. Ling even called him in and told him do I need to write you a prescription to sleep with your wife. She needs you. Shes got a lot of surgeries and she needs to have things moved around in there and nobody can do it but you. If you could just move things around in there so they wont go back together. Dr. Hamby was seei ng the same thing that he needed to intercourse me so that or palpitate it or something because I had surgeries that were inside and things needed to be moved around. My scar was stationary. It wouldnt move. Everything from here was just stuck. Thats where Deanne came in. we pulled and stretched and then she did the electrical stim shock and the apparatus on the inside which is a cross and everything We got things to moving in there because I felt like something was stuck. I always told Dr. Ling I think my bladder is stuck inside. It feel s like something is stuck. We moved things around and everything, pulling, stretching and exercisi ng and all that. At that ti me I couldnt go up and down stairs either because of the multiple surg eries. He didnt intercourse you. Now it is much better because were talking and I dont have to worry about those things. I dont go to bed with a yearning and a desire and wake up the next day the same then day after day after day the same thing with no explanation so that makes it less. PK : Despite the fact it hurts to have intercourse youve always desired it, that never affected your interest? M40 : No I never liked intercourse.

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225 PK : You said going to bed with this yearning and desire. M40 : Because I wanted my husbands affection. M48 : It has changed with my husband. We dont do things. I cant stand nobody to lay on this side or that side. This side here is limited to just me putti ng my leg over, its just irritable. You cant put any kind of pre ssure to this side. 55: I had a lot of problems before I had my hys terectomy, it hurt to have sex, not to have sexAfter the hysterectomy, it didnt hurt to have sex anymore but yet I still occasionally would get that particular pain. K1 : When I have intercourse that builds my pain le vel, I have a little burning and it gets better but theres nothing really in it for me, why do it you know. Then after then the next day the next day its worse and the next day burning, this was before surgery, I knew Id be in the bed like a 7, but now I dont have sex so I don t have that pain; the physical therapist said not to do that (sex) right now K4 : We never have intercourse a lot, not as much as we should but its not been a real issue I think my husband and I would be a lot closer if we could ha ve more relations K7 : In terms of sexual activities, I think every time we set about to it I think my husband i in the back of his mind is thinking You dont want to hur t her. So it has changed little bit, not for the best. K8 : Sometimes I have cramping after intercourse. Sometimes I have cramping during but thats just like if that happens its ju st stopped. Mainly I get more easily than I used to. Im just sore. Its like a 3 or 4 on the 10 point scale afterwards; its nothing comp ared to the other pain I have but I wouldnt have sex again you know for mayb e a day or two because of the soreness. During intercourse I can go to a 7 before I have to stop. K10 : Im not the same, intercourse wise and its an issue they (doctors) cannot deal with. They choke up on it. This is any kind of doctor. The physical therapist Im seeing now is the first person to address it. K10 : My husband is wonderful. Hes an ange l. We havent had sex for two years. PK : How does he handle that? K10 : Horribly K10 : The last time I had sex it stayed at a 10 for two or three days. I want to be able to have sex with my husband again Will you help me with my sex problem? K14 : I was having pain with sexual arousal that seems to be muscle pain. Its amazing what shes (the physical therapist) been doing. I didnt realize that I was having that much pain from that. It has helped a lot the dull pain. The intercou rse pain is not better ye t, just the arousal pain. The arousal pain is probably about a 9. Its almost bad enoug h where you dont want to keep on. Its very bothersome. The pain during intercourse ,it kind of eases off. Once I get past that

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226 initial arousal pain it kind of goes to about a 6. The pain afterwards I just feel really I guess sore. The level 6 kind of stays afterwards. K14 : I had a boyfriend and explained the whole issue about sex is not pleasurable, its not something I want to do on a daily basis. He was oka y with it for a little bit and now hes not very nice he moved on. K15 : the sex we couldnt have wit hout it being very painful. We had but it was uncomfortable. I think when you have a healthy se xual relationship with your husband I think that in and of itself thats been relaxing, enjoyable, stress relieving activity that if that happened and everything is right with that then the stress, ev en if you have stress at work, is not as severe. If you have stress somewhere else its not as severe because theres that release when you have been all that other stuff youre working on I think. Its not that everything revolve s around that because my husband and I talk about that. Thats not what our relationshi p is based on but I also know that in a healthy relationship like that and like weve had up until that it wasnt tense or tight.

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227 LIST OF REFERENCES Aaron, Kaytura Felix, with David Levine and Helen R. Burstin 2003 African Am erican Church Participation a nd Health Care Practices Journal of General Internal Medicine 18(11):908-913. Abraham, Karen 2003 Report from the National Institutes of Health Conference on Chronic Pelvic Pain. Journal of Womens Health P hysical Therapy, September. Addis Ilana B., with Stephen K. Van Den Eeden Christina L Wassel-Fyr, Eric Vittinghoff, Jeanette S. Brown., David H Thom. 2006 Sexual Activity and Function in Middle Age and Older Women. Obstetrics and Gynecology 107(4):755-764 Agar, Michael H. 1980 The Professional Stranger: An Inform al Introduction to Ethnography. Orlando: Academic Press. Allen, J and S. Szanton 2005 Gender, ethnicity, and cardiovascular di sease. Journal of Cardiovascular Nursing. JanFeb;20(1):1-6. American Psychiatric Association. 1994 Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. Washington, DC: American Psychiatric Association. Antolak, S. J. 2005 Male Pelvic Pain. 13th Annual Scie ntific Meeting on Chronic Pelvic Pain. International Pelvic Pain Soci ety. Program Book, Atlanta, October 7-8. Antolak, S. J., Jr., D. M. Hough, W. Pawlina and R. J. Spinner 2002 Anatomical Basis of Chronic Pelv ic Pain Syndrome: The Ischial Spine and Pudendal Nerve Entrapment. Medical Hypotheses (5993):349-353. Apgar, B. S. 2002 Case 4: Challenges of Fragmented Care Long-Term Management of Pelvic Pain. Journal of Family Practice (56)3:S2092. Arnold, L. D., with G. A. Bachmann, S. Kelly, R. Rosen and G. G. Rhoads 2006 Vulvadynia: Characteristics and Associ ations with Co-morbidities and Quality of Life. Obstetrics & Gynecology 107(3):617-624.

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229 Banks, A. D., and R. E. Malone 2005 Accustomed to Enduring: Experi ences of African-American Women Seeking Care for Cardiac Symptoms Heart Lung 34(1):13-21 Baker, Patricia King 1993 Musculoskeletal Origins of Chronic Pelvic Pain. Obstetrics and Gynecology North America 20:719-742 1998 Musculoskeletal Problems. In Chronic Pelvic Pain. Steege, John A, Metzger, Deborah A. and Levy, Barbara S. Philadelphia: W.B. Saunders. Barnard, K., with S. M. Frayne, K. M. Skinner and L. M. Sullivan 2003 Health Status among Women with Menstrual Symptoms. (Bedford Va. Medical Center, Bedford, Mass.). Jo urnal of Womens Health 12:911-919. Bashford Robert A 1998 Psychiatric Illness. In Chr onic Pelvic Pain-An Integrated Approach. Steege, John A, Metzger, Deborah A. and Levy, Barb ara S. Philadelphia: W.B. Saunders. Bates, Maryann S. 1996 Biocultural Dimensions of Chronic Pain--Implications for Treatment of MultiEthnic Populations. Albany: Univ ersity of New York Press. Bates, Maryann S., and W. Thomas Edwards 1992 Variations in the Chronic Pain Experience. Ethnicity and Disease 2(1):6 3-83. Beard, R.W., with P. W. Re ginald and J. Wadsworth 1988 Clinical Features of Women with Chronic Lower Abdominal Pain and Pelvic Congestion. British Journal of Obst etrics and Gynaecology 95:153-161. Belgrave, Faye Z. 1992 Improving Health Outcomes of Afri can Americans: A Challenge for African American Psychologists. In African American Psychology Theory Research and Practice. A. Burlew, Kathleen Hoard, W. Curtis Banks, Harriette Pipes McAdoo and Daudi Ajaniya Azibo, eds. Ne wbury Park, Calif.: Sage. Bergant, A. M., and M. Widschwendter 1998 Chronic Pelvic Pain (CPP)--Gynaecologic and Psychosocial Factor Archives of Womens Mental Health 1:103-108. Berkley, Karen J. 2002 Neural Mechanisms of Pelvic Pain : Viscero-Visceral Interactions and Reproductive Status. Conference Proceedi ngs Chronic Pelvic Pain: Pathogenic Mechanisms, Treatment Innovations and Res earch Implications. National Institutes of Health, Bethesda 2005 A Life of Pelvic Pain. P hysiology and Behavior 86(30):272-280.

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254 BIOGRAPHICAL SKETCH Patricia Marie King Baker holds a Bachelor of Science degree in community health education from East Tennessee State University; a Bachelor of Science in Physical Therapy from the University of Tennessee, Memphis; and a Master of Arts in Medical Anthropology from the University of Memphis. She is a Board Certifie d Clinical Specialist in Orthopaedic Physical Therapy and a Certified Orthopaedic Manual Physical Therapist. Sh e is past Editor-in-Chief of the Journal of Womens Hea lth Physical Therapy official publication of the American Physical Therapy Associations Section on Womens Health.