ENDEAR partnership announcement

Endometriosis UK, Cysters and the Nuffield Department of Primary Care Health Sciences at the University of Oxford are working in partnership in a study about using experiences of endometriosis to improve healthcare. As part of an ongoing commitment to joined up working, the study brings together lived and learnt expertise to push forwards for better endometriosis healthcare and support for all.

Endometriosis is finally getting more attention and focus in the media, policy, and beyond. Alongside campaigning and awareness-raising, research is an important way to bring about change for the better. Join us in finding out what matters to the people affected by endometriosis and learning from these experiences.

“Endometriosis UK welcomes new research into endometriosis which is vital for improving the lives of those affected by the disease. We are campaigning for more investment in research to find the cause of endometriosis, better management and treatment options, and a cure. Historically endometriosis has been underfunded, and it’s time that changed to transform the lives of all those affected by the disease.” 
(Endometriosis UK)

To be sure that the findings and recommendations we make from the study are inclusive, it is vital the research includes a wide range of experiences. In particular, we want to talk to people who have found it particularly difficult to register with a doctor, get a doctor’s appointment, have their concerns and views taken seriously by others, or access and use treatments. This could be for a range of reasons, and could include: being from racially minoritised groups, having English as an additional language, living with disability or other health conditions, being gender diverse, and/or facing challenges such as poverty or homelessness.

“At Cysters, we believe research must start with the people it aims to serve. For too long, those from marginalised communities—particularly racially minoritised, disabled, LGBTQIA+ individuals and those navigating multiple systemic barriers—have been left out of the research and policy spaces shaping endometriosis care. That’s why we’re proud to co-lead this work, ensuring that patient voice isn't just a box-ticking exercise, but a core foundation of the study. Co-collaboration with the diverse communities we work alongside isn’t optional—it’s essential if we are to drive meaningful, inclusive change in outcomes for everyone affected by endometriosis.” (Cysters)

 The study will also be used to make an online resource on the Health EXperiences Insights (HEXI) website to give support and information as well as for use in training healthcare professionals.

“It’s about creating a resource that represents the range of experiences around endometriosis, showing all the different journeys and what people want to share with others to make it better.” (Study researcher, Dr Rachel Dewar-Haggart)

How can I get involved?

We are inviting people across the UK to take part in an interview in person or online – at a time and place convenient to them – to hear about their experiences of symptoms, getting a diagnosis, treatment, and more.

We also want to talk to people with lived experience of endometriosis to get their thoughts on the study and how we can make it a better experience to take part in. This includes how and where we advertise about the study, the questions we might ask in the interviews, and how we can share the findings. If you’re interested in sharing your views, please get in touch.

For more information about taking part, please visit and fill in the form on the experiences of endometriosis study webpage.