Endometriosis-Associated Dyspareunia: the Impact on Women’S Lives Elaine Denny, Christopher H Mann
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ARTICLE J Fam Plann Reprod Health Care: first published as 10.1783/147118907781004831 on 1 July 2007. Downloaded from Endometriosis-associated dyspareunia: the impact on women’s lives Elaine Denny, Christopher H Mann Abstract pain was found to limit sexual activity for the majority of the sample, with a minority ceasing to be sexually active. Background and methodology Endometriosis is a Lack of sexual activity resulted in a lowering of self- chronic condition in which endometrial glands and esteem and a negative effect on relationships with stroma are present outside of the uterus. Whereas partners, although the experience differed between chronic pelvic pain is the most commonly experienced younger and older women. pain of endometriosis, many women also suffer from deep dyspareunia. In order to determine how much of an Discussion and conclusions The experience of impact endometriosis-associated dyspareunia has on dyspareunia is a significant factor in the quality of life and the lives and relationships of women a qualitative study relationships for women living with endometriosis. For using semi-structured interviews, supplemented with most of the women in the study it was very severe and quantitative data on the extent of dyspareunia, was resulted in their reducing or curtailing sexual activity. conducted in a dedicated endometriosis clinic in the Qualitative research can produce salient data that West Midlands, UK with 30 women aged from 19 to 44 highlight the impact of dyspareunia on self-esteem and years. sexual relationships. Results The main outcome measures were the extent of Keywords dyspareunia, endometriosis, qualitative dyspareunia within the sample of women, and the impact research, quality of life, sexual relationships of dyspareunia on quality of life. The experience of dyspareunia was found to be higher than in previous J Fam Plann Reprod Health Care 2007; 33(3): 189–193 research. Three main themes emerged. The experience of (Accepted 12 October 2006) Introduction Endometriosis is a chronic condition in which endometrial Key message points glands and stroma are present outside of the uterus. This G Dyspareunia is a more common symptom of abnormal tissue is most commonly, but not exclusively, endometriosis than previously reported. found in the abdominal cavity. The cyclical hormonal G The experience of dyspareunia has an impact on quality influence of progesterone and oestrogen on these of life and relationships for women. endometrial deposits causes activation of the tissue, G The importance placed upon the consequent avoidance leading to the typical symptom of pain.1 The frequency of of sexual activity varies among women. diagnosis of endometriosis has increased over the last 15–20 years.2 However, this may not reflect a rise in the true incidence of the condition, rather in the methodology been a common finding in previous studies on employed in diagnosing the condition, as this increase in endometriosis and chronic pelvic pain.4–8 Ferraro et al.4 the number of cases diagnosed coincided with the used a sexual function questionnaire in order to introduction of laparoscopy for the direct confirmation of characterise sexual functioning among women, and http://jfprhc.bmj.com/ the presence of endometrial tissue in the abdomen.3 It is found that women with endometriosis experienced also thought that later and less frequent childbearing, with higher prevalence of deep dyspareunia than controls a consequent increase in menstrual cycles, theoretically (60.6% of the sample compared with 34.9% of controls), presents more opportunity for endometrial tissue to implant and women with disease of the uterosacral ligaments had outside the uterus.2 higher prevalence than those with endometriosis in other The true prevalence of this disease is unknown, but it sites. Intensity of pain in Ferraro et al.’s study was is usually estimated to be present in between 5% and assessed using a visual analogue scale. The same authors 15% of women of reproductive age.2 Whereas chronic also found that women with endometriosis have on September 27, 2021 by guest. Protected copyright. pelvic pain is the most commonly experienced type of frequently experienced deep dyspareunia throughout pain in endometriosis, many women also suffer from their entire sexually active lives. deep dyspareunia4 (deep pelvic pain associated with Fauconnier et al.5 utilised medical records and sexual intercourse). The symptom of dyspareunia has descriptions of the findings at the time of surgery in order to gauge the relationship between the anatomic location of deeply infiltrating endometriotic lesions and nature and severity of pain symptoms. The retrospective data analysis Faculty of Health, University of Central England, of Fauconnier et al.’s study found that 78.6% of women Birmingham, UK experienced dyspareunia, and it also showed that deep Elaine Denny, PhD, Head of Health Policy and Public Health dyspareunia was associated with endometriotic lesions in Division the uterosacral ligaments. This finding was also reported by Birmingham Women’s Hospital, Birmingham, UK Porpora et al.6 in their study considering the correlation Christopher H Mann, MD, Senior Lecturer in Gynaecological between endometriosis and pelvic pain, but Vercellini,7 Oncology who considered whether prevalence and severity of pain Correspondence to: Professor Elaine Denny, Department of are related to endometriosis stage and site, found that deep Community Health and Social Work, Health Policy and Public dyspareunia was associated more with vaginal Health Division, University of Central England, Perry Barr, endometriosis. Most of the current literature does not, Birmingham B42 2SU, UK. E-mail: [email protected] however, have dyspareunia as its primary focus, but ©FFPRHC J Fam Plann Reprod Health Care 2007: 33(3) 189 Denny and Mann J Fam Plann Reprod Health Care: first published as 10.1783/147118907781004831 on 1 July 2007. Downloaded from Table 1 Characteristics of the study sample the interviews. It allowed them to communicate the complexities of their lives and also enabled them to set Characteristic Value parameters around what they were prepared to reveal.10 This type of qualitative research is particularly useful if Average age in years (range) 31 (19–44) 11 Socioeconomic status experience and subjectivity are actively sought, and for Social class 1–3 27 researching sensitive issues such as sexual function. Semi- Social class 4–5 3 structured interviews took place in a location chosen by the Marital status woman, or acceptable to her, and all the interviews were Married/cohabiting 20 taped-recorded with the permission of the participants. Single 10 Sexual orientation Women were initially invited to tell their story of living Heterosexual 30 with endometriosis from the time at which they first Homosexual 0 experienced symptoms of endometriosis. Fourteen women Women with children (n) 11 (plus two pregnant spontaneously discussed painful sexual intercourse at this at interview) Parity (range) 1–3 time. Follow-up questions by the researcher expanded on Ethnicity the issues raised by participants, and introduced the White British 27 concept of dyspareunia to those women who had not Afro-Caribbean British 1 mentioned it originally. Indo-Caribbean 1 South American Indian 1 All interviews were transcribed verbatim. Rigour in the Average time from symptoms to 5.65 (1–18) research process was achieved by sending women a diagnosis in years (range) transcript of their interview and asking them to confirm its veracity, and by both researchers being involved in the interpretation and analysis of data, and in the generation of research into other aspects of endometriosis frequently key themes. finds that deep dyspareunia is a common theme in the experience of endometriosis. For example, Momoeda et Ethical approval al.8 found that the frequency of dyspareunia increased with Ethical approval for this study was obtained from the disease stage in women with endometriosis whose primary University of Central England Faculty of Health Ethics complaint was either chronic pelvic pain or infertility. Committee and South Birmingham Research Ethics All of the studies cited above used quantitative Committee. methodology to correlate dyspareunia with the site of endometriosis. One of these studies was also retrospective Analysis and utilised medical records in order to obtain data.5 The As a storytelling approach was utilised for the collection of data, narrative analysis was considered most appropriate, study reported here is primary research, and although 9 primarily qualitative in order to assess how much of an the specific model used being thematic analysis. This impact the experience of deep dyspareunia has on the began with intensive reading and re-reading of interview quality of life in women with endometriosis, it also transcripts, which was carried out independently by both gathered quantitative data to gauge the extent of the authors. It resulted in the generation of themes, and also a problem. framework by which to classify the data. Common themes and divergent cases were elicited and explored. Rigour in Methodology the analytical process was achieved by both authors Sample independently analysing the data and agreeing the The sample was recruited from women attending a emergent themes. Rigour was increased by the involvement dedicated endometriosis outpatient clinic. The sole of the women in the sample in confirming the veracity of http://jfprhc.bmj.com/ criterion for inclusion was laparoscopically diagnosed data from their own interview, and agreeing the relevance endometriosis, and this was confirmed in all 30 cases by of themes. the same surgeon macroscopically, and by histological examination of biopsy samples. It therefore constituted a Results purposive sample. Women who met the criterion were Reported incidence of dyspareunia invited to participate and given an information leaflet to It was found that dyspareunia was experienced by 23 take home. They were telephoned a week later to confirm (86%) of the valid sample (i.e. those 27 women out of the participation and written consent was obtained before total study cohort who were sexually active) (Table 2).