Pain management, intimacy and parenthood amongst couples living with endometriosis

Background: Endometriosis is an enigmatic, chronic gynaecological condition of unknown aetiology affecting women of reproductive age. Incidence is difficult to assess but has been estimated at between 5 and 15% of the female population. Common symptoms are severe dysmenorrhoea, chronic pelvic pain, fatigue, menorrhagia, and dyspareunia. It is also associated with 40% of attendances at infertility clinics. As there is no cure for endometriosis the management focuses on removal of ectopic endometrial tissue and symptom relief which can involve a range of interventions including analgesics, hormonal therapy and surgical interventions, with varying and unpredictable rates of success. The aims of the UK-based Endopart study (funded by the UK Economic and Social Research Council: ES/J003662/1) are to explore the impact of endometriosis on heterosexual couples and to contribute to enhancing the well-being of people living with endometriosis by providing an evidence base for improving couple support. Methods: Contextual interviews with key informants (n=11) were followed by qualitative interviews with 22 heterosexual couples which were analysed within a critical realist framework. Separate, in-depth, face-to-face interviews (n=44) were conducted with women and men. Inclusion criteria were a laparoscopic diagnosis of endometriosis and that couples had been living together for at least one year. Principles of systematic sampling were employed to ensure diversity amongst participants regarding age, ethnicity, illness trajectory, and recruitment route. Data were analysed thematically, informed by an interpretivist and gender relational approach. A participatory stakeholder workshop with couples, healthcare providers and support group representatives enabled a critical dialogue on emergent findings and the development of recommendations for couple support in endometriosis. Results: Endometriosis pain can have a major and devastating impact on all aspects of women’s lives and those of their partners. Two key dilemmas relating to pain management are discussed. First, dyspareunia requires women to make a difficult choice between abstaining from sex, with resultant feelings of guilt and concerns about risks to relationships, and enduring painful sex to experience desired intimacy and closeness. When male partners are aware of dyspareunia, they become reluctant to instigate sex and experience associated feelings of guilt. Second, treatments that alleviate pain often prohibit conception and findings demonstrate the difficult choice couples have to make between pain reduction and achieving parenthood, while simultaneously assessing risks that their treatment may be ineffective or that conception may not occur. The decision making process is further complicated when partners have differing priorities. Conclusion: Desires for motherhood and intimacy shape women’s choices concerning endometriosis pain management, and are, for some, prioritised over pain reduction. This study also uniquely illuminates that men also have to consider their own desires for fatherhood or intimacy in the context of their partner’s endometriosis. Healthcare providers need to understand the impact of endometriosis pain on couples and the complex factors that influence attitudes and actions concerning endometriosis pain management