Making sense of endometriosis care: an interpretative phenomenological analysis of gender diverse people with endometriosis in the UK

Background Gender-diverse people with endometriosis in the United Kingdom (UK) encounter prolonged diagnostic pathways and barriers to accessing appropriate healthcare. However, research examining their experiences of endometriosis care remains limited.Materials and methods In-depth semi-structured interviews were conducted with five gender-diverse people who had accessed endometriosis care in the UK. Data were analysed using interpretative phenomenological analysis (IPA).Results Two overarching themes were developed, each comprising two subthemes. The first, negotiating legitimacy under conditions of systemic rigidity, comprised systemic rigidity and anticipatory identity management and clinicians as gatekeepers of legitimacy and autonomy. The second, the psychological burden of navigating healthcare, comprised embodied and emotional consequences of navigating care and self-advocacy as dependent on emotional, cognitive and social resources. Participants described inflexible, cisnormative healthcare that constrained their autonomy and access to appropriate care. Previous experiences of invalidation and anticipated stigma contributed to identity concealment and heightened self-monitoring. Although diagnosis provided some participants with relief and validation, it did not guarantee that their experiences would subsequently be recognised or believed, making continued self-advocacy necessary.Conclusion Structural and interpersonal healthcare processes may reinforce minority stress and contribute to inequities in endometriosis care for gender-diverse people. The findings support the development of more inclusive, gender-affirming and patient-centred endometriosis services.