Insights from focus groups with trans and gender-diverse people with endometriosis: stories you tell, stories you don’t

Abstract

Endometriosis is a chronic condition characterised by cyclic pain symptoms that often significantly affect health-related quality of life. Predominantly framed as a “woman's condition”, current research overlooks the experiences of transgender and gender-diverse (TGD) individuals with endometriosis. This jeopardises the right to health for a community that faces historically rooted social and health disparities. This study aims to explore the embodied relationship between gender and endometriosis symptoms among TGD people living with endometriosis. A secondary objective is to examine the accessibility and competence of healthcare systems in addressing the needs of this community. The methodology included two focus group discussions conducted across four focus groups (4 × 2). Fourteen participants representing diverse gender identities, various stages of endometriosis and ages, were recruited online from nine countries across three continents, forming a heterogeneous group. Reflexive thematic analysis identified 15 codes and 7 clusters. The results were organised into themes, following the four embodiment epidemiological notions. Participants reported their gender self-perception and endometriosis symptoms to be interrelated and mutually influential. Feelings of disconnection and alienation were prevalent, particularly during life events such as menarche. Due to mistrust and experiences of discrimination, many TGD individuals withhold critical information during medical consultations. TGD people with endometriosis have unique health needs, e.g. how to combine gender-affirming and endometriosis care, and they are often concerned about future employability. Overall, the study underscores the urgent need to improve healthcare for TGD individuals with endometriosis as a matter of health justice.