In March, the Endometriosis Management and Promotion Of Wellbeing using Evidence-based Research (EMPOWER) Network held its first Patient and Public Involvement (PPI) Workshop at Insole Court, Cardiff, bringing together a group of 11 women from a range of backgrounds with one shared goal: sharing their lived experience of endometriosis to improve research and care in Wales.
The workshop followed the launch of the EMPOWER network in February, where attendees mapped the current landscape of endometriosis research and clinical provision in Wales, identifying key priorities for future work.
Facilitated by The Fabulous Facilitator, Beth Baldwin, the PPI workshop focused on exploring participants’ perspectives and experiences of contrast therapy – alternating heat and cold via saunas and cold plunges – as a potential symptom management strategy for endometriosis. Hollie Withers from Pawb Arts was also present to capture the discussions using innovative arts-based creative methods.
Participants were invited to share their initial perceptions of contrast therapy through an interactive activity, before moving into a more in-depth discussion about their personal experiences, willingness to try such approaches, and any concerns they might have.
Following a lunch break, the focus shifted towards co-designing the study. Participants reviewed the proposed interview schedule, questionnaires, and outcome measures, offering valuable feedback on language, relevance, and inclusivity. The group also discussed the acceptability of biological measures, such as saliva swabs and blood samples, ensuring that participant burden and comfort were carefully considered.
The workshop concluded with a reflective session, where participants shared final thoughts, suggestions, and key considerations. These insights will play a crucial role in shaping the EMPOWER-Contrast Therapy study, ensuring it is designed in a way that is both accessible and meaningful to those it aims to support.
Dr Laura Cowley, EMPOWER’S Principal Investigator, said:
“It was fantastic to see everyone come together to share their experiences and give a voice to those living with endometriosis. Creating that space for open discussion is so important, because lived experience brings a depth of insight that research alone cannot capture. By working collaboratively with participants, we can ensure the study is shaped by what truly matters to them. Their input will play a vital role in guiding the direction of this research and helping us design a study that is meaningful, accessible, and ultimately improves support and quality of life for people with endometriosis.”
If you would like to learn more about this research and/or join the EMPOWER Network please email Dr Laura Cowley, @L.E.Cowley@Swansea.ac.uk.