Endometriosis: improving the well being of couples

Lead Research Organisation: De Montfort University
Department Name: School of Applied Social Sciences


Endometriosis is a relatively common, disabling gynaecological condition affecting up to 2 million women in the UK alone. Common symptoms are chronic pelvic pain, fatigue, heavy periods, and a deep pain experienced during sexual intercourse. It is also associated with 40% of attendances at infertility clinics. There is no consensus on what causes endometriosis and there is no definitive cure.
Despite the chronic and potentially disabling nature of endometriosis, along with its impact across a wide range of life domains, there is relatively little work on the impact of endometriosis on couples. Whilst all chronic conditions will affect the "well" partner to some extent, endometriosis can be particularly problematic because of its impact on fertility and sexual relationships and because of its invisibility. The few studies which have been done on the 'well' partner in other kinds of chronic illness suggest that endometriosis may impact on the partner in many ways and may compromise the couple relationship. However, there are no published UK studies that focus specifically on either men or couples. Furthermore, most of the research on endometriosis has been on 'white' majority populations.
The overall aim of this study is to explore the impact of endometriosis on couples; to contribute to the development of theory in chronic illness and to contribute to improving the well being of people living with endometriosis by providing an evidence base for improving couple support. Our research questions include: How do heterosexual couples experience living with endometriosis? How do the uncertainties of endometriosis diagnosis and prognosis impact on couples? How do women and their partners mobilise resources to negotiate endometriosis and what are the perceptions of key stakeholders (patients and healthcare providers) on how endometriosis management and support can be improved? In what ways can research on endometriosis help us in understanding other chronic conditions?
This is a qualitative study in three phases. Phase one is a contextual phase consisting of interviews with key informants including healthcare providers, patients, and support group representatives. Data from these interviews, together with insights from our literature review and advice from an advisory group will inform the development of an interview guide to be used in phase two. Phase Two will consist of separate in-depth interviews with women living with endometriosis and with their male partners. Couples will be recruited from a variety of sources (hospitals, support groups, word of mouth). We anticipate recruiting up to 20 couples for 40 interviews. Studies previously carried out by three of the applicants have indicated the potential importance of ethnicity in understandings of and experiences of endometriosis and the linked condition of infertility. Our sample will therefore include men and women from both White and South Asian groups. Couples will be recruited from several sources (NHS outpatient clinics in four UK cities, endometriosis support groups, and by snowball sampling) to reduce bias in sampling.
The interviews will be broad ranging and relatively open in format, allowing each participant to discuss what is important to them in their experience of the phenomenon. Interviews will be supplemented by asking participants to self-record additional data whenever endometriosis has a particular impact on their lives, in the month following interview. Analysis will be guided by principles of interpretive phenomenological analysis.
Phase three brings together the findings of phases one and two for discussion at a dialogue workshop of key stakeholders (people with endometriosis and their partners, academics, health professionals, support groups) which will collaboratively explore the findings and discuss how insights from this work can inform theories of chronic illness and contribute to improved support for couples.

Planned Impact

Non-academic beneficiaries include:
1. People living with endometriosis. The study will provide new evidence of the impact of endometriosis on women and their male partners. It will enhance an understanding of what it means to live with this condition, and to live with people who have a chronic condition which can affect fundamental normative processes such as the ability to work and the ability to bear children. The research will be sensitive to the impact of potentially different cultural contexts in the experience of endometriosis. This will enhance the development of appropriate and sensitive couple-centred management, counselling and other forms of support, recognising the cultural and relational aspects of chronic illness. It will add to the ability of those who provide support to people living with endometriosis to understand and respond more effectively to relational aspects of this condition and thus ultimately improve the well-being of women and their partners. Findings will be of direct interest to individuals with endometriosis who are often 'expert patients', highly cognisant of research in the field. It may also provide insights useful for couple support in other chronic conditions. The project will have a dedicated (non-university) website, accessible by the public. Regular newsletters will be posted and the outputs will be available here. People living with endometriosis will be key participants in the stakeholder workshop and advisory group, ensuring their perspectives on the project are represented throughout.

2. The Public Sector: Health Care Professionals (doctors, nurses, counsellors). The study will add to the knowledge of health professionals of the social and psychological aspects of this chronic condition and generate insights to improve the effectiveness of their practice and ultimately improve patients' quality of life. This will be facilitated by the inclusion of a medical consultant with extensive networks in the field (e.g. RCOG) as co-investigator. Additional professional groups (e.g. RCN, Counselling Associations) will be represented on the advisory group and be involved in the stakeholder workshop.

3. Third Sector/Voluntary Support groups. Several support groups have been consulted in the course of preparing this proposal. They are very supportive of this research and confident that they will be able to use the findings to improve their support to women with endometriosis and their partners. Thus, the research is supported by Endometriosis UK and the SHE Trust, who are major sources of support for people with endometriosis. They (along with patients) have been consulted on the research design and will have an ongoing role in the project advisory group. This group will also include representation from the South Asian communities in Leicester with which team members have excellent links. This will enhance ownership of the findings and their potential utilisation in practice, supporting women and men and advancing our empirical and theoretical understanding of endometriosis. The support groups will also assist with recruitment via their membership and websites [Letters of support are available]. They will play a key role in the stakeholder workshop, where the findings will be discussed and an action plan devised. This will allow the maximum impact on the activities of these groups who currently provide support for substantial numbers of people. Activities will be publicised on their websites.
Members of the team (LC, NH, ED in particular) have a strong track record of working with community support groups and with health professionals and in undertaking research to inform their work. e.g. the ASFERT study of infertility (Culley) impacted on the work of health professionals in infertility clinics and counsellors (via BICA). The Endocul Study (Denny/Culley) has produced DVD resources on endometriosis targeted at women and an online resource on cultural diversity for health professionals.