'I don’t know what sex is like without pain’: the impact of endometriosis on sexual relationships in couples

Abstract

Background Endometriosis is a common, chronic, disabling condition of unknown aetiology which affects an estimated 5-15% of women worldwide. Common symptoms include dysmenorrhoea, heavy menstrual bleeding, pelvic pain, fatigue and dyspareunia and it is associated with infertility. While there is evidence of a negative socio-psychological impact on women, there is little research internationally which explores the experience of male partners or the impact on couples. Aims The aims of the UK based Endopart study* (funded by the UK Economic and Social Research Council) are to explore the impact of endometriosis on couples and to provide an evidence base for improving couple support. Method Contextual interviews with key informants (n=11) were followed by a qualitative interview study of 20 heterosexual couples within a critical realist framework. Separate, in-depth, face to face interviews (n=40) were carried with men and women [March to November 2012]. Data were analysed thematically and dyadically, informed by an interpretivist and gender relational approach. A participatory stakeholder workshop with couples, healthcare providers and support groups enabled a critical dialogue on emergent findings and development of recommendations. Results Endometriosis can have a major and often devastating impact on all aspects of life for both women and their male partners. In this paper we highlight the impact of endometriosis on the sexual relations of couples and the difficulties some couples experience communicating with each other and with healthcare providers in this highly sensitive area. Discussion and conclusion Hegemonic ideas of femininity, masculinity and gender relationships shape couples’ experience of endometriosis. Healthcare providers need to understand the impact of endometriosis and its treatment on quality of life, especially on sexual relationships. The paper uniquely advances knowledge of couples’ experiences of living with endometriosis and argues for nurses to consider the implications of this enigmatic condition for nursing practice.

* see www.endopart.co.uk