Improving the wellbeing of couples living with endometriosis

Study question \nHow do heterosexual couples experience living with endometriosis? \n \nSummary answer \nOur data demonstrate that endometriosis and its management significantly disrupts the lives of both women and men in many domains and that healthcare providers and support groups need to give further attention to the specific needs of men and of couples in the management of this common, chronic condition. \n \nWhat is known already \nEndometriosis is a chronic gynaecological condition affecting women of reproductive age with an estimated incidence of 5-15%. Symptoms include severe dysmenorrhoea, chronic pelvic pain, fatigue, heavy menstrual bleeding and dyspareunia. It is associated with 40% of attendances at infertility clinics. Studies report strain on social and marital relationships, as well as identifying partners as an important source of support. Such studies only capture women’s experiences, however, and male partners remain largely absent from the literature. \n \nStudy design, size, duration \nThe UK-based ‘Endopart’ study is a qualitative, cross-sectional interview study. Inclusion criteria for couples were a laparoscopic diagnosis of endometriosis and that couples were living together at the time of interview. Interview data were collected between April 2012 and December 2012. \n \nParticipants/materials, setting, methods \nIn-depth, face-to-face interviews with 22 heterosexual UK couples were conducted. Women and their partners were interviewed separately (n=44). Interviews were fully transcribed and entered into NVivo for analysis. Data were analysed using a systematic, thematic method, informed by an interpretivist relational approach. Findings were discussed with clinicians and recommendations produced. \n \nMain results and the role of chance \nIn heterosexual couples, the impact of endometriosis is not confined to women, but has significant implications for the male partner and for the couple’s relationship. The practical and emotional impact on men was found to be substantial. Couples experienced considerable disruption, loss and anxiety in the following seven domains: managing daily life; sex and intimacy; planning for and having children; mood and tensions; communicating and supporting each other; accessing and negotiating health care; and utilising information and external support. \nPrinciples of systematic sampling were employed to ensure sample diversity regarding age, ethnicity, illness trajectory, and recruitment route. Interim outcomes from the study were discussed at an expert stakeholder workshop in order to enhance interpretive validity. \n \nLimitations, reason for caution \nThe cross sectional design makes it difficult to capture the dynamic nature of the impact of endometriosis across the life course. The sample contained a significant proportion of well educated individuals. It would be helpful to confirm findings from the rich and detailed interview data with a larger quantitative study. \n \nWider implications of the findings \nAn estimated 176 million women are affected by endometriosis worldwide. There is no known cure, and treatment has variable impact on symptoms. Finding effective ways to manage the condition is crucial. Discussions of management are focused on the woman, largely ignoring the impact on couples. These findings have implications for the development of couple-centred management and counselling, adding unique data to the knowledge base of clinicians and others providing support to people living with endometriosis.