More about the Endopart Project
The overall aims of the study were to explore the impact of endometriosis on couples 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 included:
- How do heterosexual couples experience living with endometriosis?
- How do the uncertainties of endometriosis diagnosis and prognosis impact on couples?
- What are the perceptions of key stakeholders (patients and healthcare providers) of how endometriosis management and support can be improved?
- In what ways can research on endometriosis help us in understanding other chronic conditions?
What is endometriosis?
Endometriosis is a relatively common, disabling gynaecological condition affecting up to 2 million women in the UK alone. Tissue similar to the lining of the womb grows in other areas of the body, most commonly in the pelvic region. This tissue responds to hormones in the same way as the lining of the womb but with no outlet it can cause inflammation, scarring and adhesions, leading to severe pain and many other symptoms. Common symptoms include chronic pelvic pain, fatigue, heavy periods, and pain experienced during sex. 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. Click here for sources of information on endometriosis.
How does endometriosis affect couples?
Studies of the impact of endometriosis on women have demonstrated that endometriosis pain can have a huge negative impact on individuals and the uncertainty associated with the condition and difficulty in obtaining a diagnosis can lead to significant amounts of distress. Despite the chronic and potentially disabling nature of endometriosis, along with its impact across a wide range of life domains, there is relatively little known about 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 couples or on the experiences of men who are living with women who have this condition.
This was a qualitative study in three phases.Phase one:
Setting the context. In the first phase of the study we conducted interviews with key informants including healthcare providers, patients, and support group representatives. We also reviewed past research into the social and psychological impact of endometriosis on women’s lives. This critical narrative review has been published by Human Reproduction Update. Further information can be found here. Phase two:
Interviews with couples. Phase two formed the main part of the study and consisted of in-depth interviews with women living with endometriosis and with their male partners. Twenty-two couples were recruited from a variety of sources (hospitals, support groups, word of mouth). Data from the key informant interviews, insights from a literature review and advice from an advisory group informed the development of an interview guide. Partners were interviewed separately. The interviews were broad ranging and relatively open in format, allowing each participant to discuss what was important to them in their experience of endometriosis. Interviews were supplemented by participants self-recording additional data whenever endometriosis had a particular impact on their lives following interview.
Stakeholder workshop. Phase three brought together the findings of phases one and two for discussion at a workshop of key stakeholders (people with endometriosis and their partners, academics, health professionals, support groups) at which participants collaboratively explored the findings, discussed how insights from this work can contribute to improved support for couples and proposed recommendations for policy, practice and research and development.
Summary report and recommendations
The team has produced a summary report and recommendations which can be downloaded here. If you would like to request a hard copy of this report please contact Caroline Law, details directly below.
If you would like to find out more about the research project, please contact Caroline Law at firstname.lastname@example.org or on +44 (0)116 2506124.