Coping with endometriosis: strategies employed by women with endometriosis and their male partners

Abstract

Endometriosis is a chronic gynaecological condition affecting women of reproductive age. Common symptoms include severe pain during menstruation, chronic pelvic pain, fatigue, heavy menstrual bleeding, and pain during sexual intercourse. It is also associated with 40% of attendances at infertility clinics. Endometriosis can significantly impact upon intimate relationships, however there has been little previous research into how couples experience and cope with endometriosis. The aim of the ESRC-funded UK-based Endopart study (grant ref ES/J003662/1) is to explore the impact of endometriosis on couples. This paper describes female and male participants’ accounts of coping with the condition. Qualitative, in-depth, face-to-face interviews with 22 heterosexual couples were conducted. Women and their male partners were interviewed separately (n=44). Inclusion criteria were a laparoscopic diagnosis of endometriosis and that couples were living together at time of interview. Principles of systematic sampling were employed to ensure diversity regarding age, ethnicity, illness trajectory, and recruitment route. Data are being analysed thematically, informed by an interpretivist approach. Initial analysis suggests that female participants used a coping strategy of “just getting on with it”, by limiting discussions about the impact of their condition with others (including their partner) and using techniques to distract themselves. Male participants talked of being optimistic about the condition, needing to negotiate their partner’s mood swings, and refraining from speaking to others about their partner’s endometriosis. Information on how women and their male partners report coping with endometriosis will aid the development of an evidence-based intervention to support couples living with this gendered condition.