Men living with endometriosis: perceptions and experiences of male partners of women with the condition

Abstract details

Submitter: Dr. Nicky Hudson De Montfort University Hawthorn Building, The Gateway Leicester Leicester LE1 9BH United Kingdom

Authors: N. Hudson1, L. Culley1, H. Mitchell1, C. Law1, E. Denny2, N. Raine-Fenning3. 1De Montfort University, Applied Social Sciences, Leicester, United Kingdom. 2Birmingham City University, Centre for Health and Social Care Research, Birmingham, United Kingdom. 3University of Nottingham, Faculty of Medicine & Health Sciences, Nottingham, United Kingdom.

Title: Men living with endometriosis: perceptions and experiences of male partners of women with the condition

Abstract Text: Study question How do male partners of women with endometriosis understand the condition and what role do they play in supporting women in managing their symptoms and access medical treatment? Summary answer Endometriosis and its management significantly disrupts the lives of both women and men in many domains. Men experienced a disruption to their own quality of life and a corresponding impact on the couple relationship. Male partners played an important role in women’s decision-making around and subsequent management of endometriosis.

What is known already Endometriosis is a chronic gynaecological condition affecting women of reproductive age with an estimated incidence of 5-15%. Symptoms include 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 with scant evidence about the specific impact on the male partner.

Study design, size, duration The 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.

Participants/materials, setting, methods In-depth, face-to-face interviews with 22 heterosexual UK couples were conducted. Women and their partners were interviewed separately (n=44). This paper draws on the interviews with the male partners. Data were analysed in Nvivo using a systematic, thematic method, informed by an interpretivist relational approach.

Main results and the role of chance The practical and emotional impact on men of living with endometriosis was found to be substantial. Whilst all chronic conditions will affect the "well" partner to some extent, endometriosis can be particularly problematic for couples because of its potential impact on fertility and sexual relationships. Involvement in treatment-seeking and associated decision-making was one way in which men provided support to their female partners. In particular, our data demonstrate men’s involvement in interactions with healthcare providers; decisions about treatment; and supporting their partners through treatment regimes. Principles 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.

Limitations, reason for caution The 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.

Wider implications of the findings An 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 men/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.

Study funding/competing interest(s) Funding by national/international organization(s) The study was funded by the UK Economic and Social Research Council, grant reference: ES/J003662/1. The authors have no competing interests to report.

Trial registration number N/A