Perceptions of Pelvic Pain and Endometriosis in Diverse Communities:An Exploration of Global Majority Women’s Experiences of UKHealthcare

Background:: Endometriosis affects 1 in 10 women of childbearing age. White middleclass women with pelvic pain are over-represented in research and clinical settings, while little is known about the experiences of women from other ethnic and sociodemographic groups. Methods:: We conducted community listening workshops, which facilitated discussions regarding people’s experiences and understanding of pelvic pain, including endometriosis. Researchers encouraged reflections on healthcare interactions and health beliefs from the perspective of women from the global majority ethnic groups living in the greater Bristol area. A total of 54 women from Somali, Black African, and Black Caribbean backgrounds participated, with the support of community leaders who acted as cultural and language interpreters. Notes from the workshops underwent thematic analysis, with triangulation from the research team and group leaders Results:: All 54 participants raised concerns about racial bias influencing their care and health outcomes relating to pelvic pain. Inductive thematic analysis led to four key themes, which were consistent across participant groups. First, pelvic pain is understood in its cultural context; in many cases, female pain is normalised. Second, there is limited culturally appropriate education or material on endometriosis, third, patients had low confidence in healthcare professionals, and fourth, this leads to a higher threshold for seeking medical care and a potential for poorer health outcomes due to delayed presentation. Discussion:: In keeping with other studies, we found that participant attitudes towards pelvic pain and other symptoms of endometriosis were influenced by cultural, ethnic, and religious factors. There may be stigma or cultural taboo around menstrual problems, which can originate from women and healthcare professionals alike, leading to dismissal or normalisation of pelvic pain. Conclusion:: These workshops demonstrate clear unmet informational and relational needs for women from global majority ethnic groups with endometriosis and pelvic pain. Co-produced educational materials for women were a core study output. However, the disparities highlighted must also be addressed through impactful clinician cultural training and further research to identify additional ways to bring about meaningful change.