Abstract
Abstract Objectives The study aims to gain insights in endometriosis experiences among transgender and gender diverse (TGD) people living with endometriosis and the care they (do not) receive. The objective is to set an agenda to narrow gaps in literature, and to identify relevant recommendations regarding endometriosis care for this community for different disciplines. Methods Recruitment took place through a call on social media and professional network of the organizers. Patients and professionals were selected to guarantee a balance of senior/junior researchers, fair geographical distribution and a diversified personal and professional background. Data was collected during a two-days event hosted at the Brocher Foundation. On the first day 12 presentations were held to ensure all participants had a common understanding of the topic. On the second day, three semi-structured focus groups were conducted. Data was analyzed following the six-step thematic analysis following Braun and Clarke (2006). Results Twenty-one participants were selected. These included patient representative and scholars from medicine, public health, social sciences, anthropology, psychology and sexology. Five clusters (research, diagnosis, treatment, HCP-related factors and social challenges) and twenty-one themes were identifies. Conclusions This study underscores the insufficiency of current literature leading to an oversimplified portrayal that does not reflect the lived experiences of many individuals. The current guidelines lack the sensitivity needed to address the unique healthcare challenges and barriers faced by this community. This disconnect manifests in delayed diagnosis, inappropriate treatments, and lack of culturally competent care, ultimately perpetuating health disparities in this already marginalized group. This study emphasizes the pressing need for a multidisciplinary and inclusive approach to endometriosis research and care. The agenda for future research must prioritize a thorough understanding of the nuanced experiences of TGD individuals with endometriosis, considering factors such as hormone therapy, gender-affirming surgeries and minority stress. Healthcare guidelines must undergo an overhaul to incorporate specific needs of this community. Conflicts of Interest The event where the data was collected was kindly hosted by the Brocher Foundation. The Brocher foundation mission is to encourage a research on the ethical, legal and social implications of new medical technologies. Its main activities are to host visiting researchers and to organize workshops and summer academies. More information on the Brocher foundation program is available at www.brocher.ch.
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