‘I’ve gone into a consultancy to really lay the law down, you know, get it sorted’: men’s perceptions of their role in treatment-seeking for endometriosis

Introduction \nEndometriosis 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. 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. \n \nMaterial & methods \nQualitative in-depth interviews with 22 heterosexual couples were carried out, with men and women interviewed separately (n=44 interviews). 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. \n \nResults \nEndometriosis can have a major and often devastating impact on all aspects of life for both women and their male partners. Involvement in treatment-seeking and associated decision-making was one way in which men provided support to their female partners. In this paper we explore the role that male partners took in: interactions with healthcare providers; decisions about treatment; and supporting their partners through treatment regimes. \n \nConclusions \nThis study uniquely advances knowledge of the couple experience of living with endometriosis and argues for health care professionals to consider the implications of this enigmatic condition for the support they provide to women and their male partners. It highlights the central role of male partners in women’s decision-making and subsequent management of endometriosis. \n \n* see www.endopart.co.uk