PGP affects around one in five pregnancies, yet it remains significantly under-researched. Better research means better diagnosis, better treatment and ultimately better outcomes for the women and birthing people who experience it. At the Pelvic Partnership, we believe research and lived experience go hand in hand: the people who have been through PGP have insights that no textbook can provide, and making sure those insights shape research is important to us.

Why research into PGP matters

PGP can be severely debilitating, yet many women still struggle to get a diagnosis, let alone effective treatment. Research is what drives change. It builds the evidence base that healthcare professionals rely on, challenges outdated assumptions, and helps make the case for PGP to be taken seriously at every level of the health system.

Research is only as good as its questions, and the best questions come from people who know what it is really like to live with the condition. When women with PGP are involved in shaping research, from the design of a study through to how the findings are shared, it leads to work that is more relevant, accessible, and more likely to make a real difference. Researchers may have clinical and academic expertise, but unless they have lived through PGP themselves, there will always be gaps in their understanding that only people with lived experience can fill.

How we can support research

As a charity run by and for people with lived experience of PGP, we are well placed to help researchers make their work more meaningful and more impactful. We can support a research project in a number of ways, including:

• Advertising studies and research opportunities to our community of women with PGP
• Reviewing study materials including patient information leaflets, questionnaires and study protocols for clarity and relevance from a lived experience perspective
• Providing feedback on grant applications and manuscripts
• Acting as co-applicant on research projects
• Participating in project steering groups
• Supporting the dissemination of research findings to those most affected by them

You can view studies we are currently supporting here.

We are a small charity with limited capacity, so we ask that researchers get in touch early and consider including appropriate funding for our involvement in any grant application. We will always try to respond to requests for support, but our ability to commit will depend on the nature and timing of the request.

If you are a researcher working on PGP and would like to explore how we might be able to support your work, we would love to hear from you. Please get in touch via email 

Taking part in research

If you have PGP, or have experienced it in the past, your experience matters to researchers. Taking part in a research study is one of the most direct ways you can help improve things for others in the future.

Research involvement can take many different forms. As a participant, you might simply complete a short survey in your own time, or you might take part in an interview. You could also join a patient advisory group, helping to shape a research project over a longer period. Some studies test treatments or interventions, but many simply want to hear about your experience: what PGP has been like for you, what has helped, and what has made things harder.

Whatever you choose to do, you should always be given clear information about what is involved before you agree, and you have the right to withdraw at any time without it affecting your care. Good research teams treat participants with respect and will always explain how your information will be used and kept private.

Being involved in research can be a positive experience in its own right. Many people find it meaningful to do something constructive with a difficult experience, and to know that what they have been through might help others receive better care in the future.

We share research opportunities with our community when we are made aware of them. You can find current studies looking for participants on our research opportunities page and we also share them via our newsletter and social media.

As well as keeping a regularly updated list of research studies that are actively looking for participants from our community, we will also share updates on relevant research findings as we become aware of them.

View current research opportunities

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