Experiences of endometriosis

Background

Endometriosis is a long-term condition involving the presence of tissue resembling the lining of the womb outside of the womb. There can be different symptoms, including pelvic pain and fertility problems, and it can have negative impacts on mental health, work, and relationships. Around 10% of women and those assigned female at birth have endometriosis, but this figure could be even higher.

People with, or suspected to have, endometriosis have voiced their poor care experiences, including via recent women's health strategies. More research is needed to better understand a wide range of patient experiences and healthcare practitioners' perspectives to find improvements that can be made.

aims

Our research aims to understand UK patients’ experiences of endometriosis alongside the perspectives of healthcare practitioners (such as doctors, nurses, and pharmacists) involved in their care. The learning will be used to support patients, inform healthcare practitioners, and shape health services to improve care journeys.

What we will do

We will interview people about what it has been like to have diagnosed or suspected endometriosis, see healthcare practitioners, and experience treatments and diagnosis. We want to hear from a wide range of patients with different experiences, including from racially minoritised groups, with disability, and from different socioeconomic backgrounds including people living in poverty. We will also interview up to 30 specialists, 10 practice nurses and clinical pharmacists, and re-analyse interviews already collected with 42 GPs.

We will explore similarities and differences in what patients and healthcare practitioners say, and look for examples of both good and poor care as well as points of mismatch between patient and healthcare practitioner accounts.

Our planned research outputs

We will make a new information and support resource on the Health Experience Insights (HEXI) website at www.hexi.ox.ac.uk about experiences of endometriosis. We will also make a short film to use at co-design workshops with patients, healthcare practitioners, and policy-makers, to work out what other resources to develop from the study. Our findings will be published and presented at conferences

How the public will be involved

Four women of different ages with lived experience of endometriosis helped design the study. At the beginning of the study, we are actively asking those with lived experience about the needs and priorities for those from marginalised backgrounds. People with lived experience are members of an advisory group who we will work with throughout the study.

Co-designed workshops will be focused on sharing study findings and resources widely.

The co-applicant team also includes the heads of two relevant national charities (Emma Cox, Endometriosis UK; Neelam Heera-Shergill, Cysters) who will help undertake the PPI work. 

Complete this form for more information on taking part