Transgender and non-binary people’s perception of their healthcare in relation to endometriosis

Abstract

Background Endometriosis is described as a gynecological disease that can severely impact on people’s quality of life. Much of endometriosis research and literature is focused on cis women, although gender diverse people and cis men have been diagnosed with this disease. Cis women have reported problems in their healthcare for endometriosis due to delays in diagnosis and a lack of support in their treatment. Gender diverse people have reported to experience discrimination in healthcare settings. There is a lack of research on gender diverse people’s experience of living with endometriosis and little is known about their experience of healthcare for endometriosis. Aim Our aim in this article is to report on the healthcare experiences of transgender and non-binary people with endometriosis. Methods We used a phenomenological lens to explore the experiences of transgender and non-binary people with endometriosis’ perceptions of healthcare. Eleven participants were recruited through social media internationally. We recruited participants that identified as transgender and/or non-binary, had suspected/diagnosed endometriosis and were 18 years old or older. Participants took part in three online semi-structured interviews and completed a diary for three months. We used Hermeneutic Analysis to analyze the data via themes. Phenomenology of embodiment was used as a theoretical point of departure in understanding the data. Results From the analysis, the following themes were created that captured participants’ healthcare experiences: (1) Medical Gaslighting of Endometriosis and Gender Diverse Experiences, (2) Misgendering and Gendered Language, (3) Medical Discrimination, and (4) Validating Experiences with Health Care Providers (HCPs) and Recommendations by Participants. The findings revealed that medical gaslighting, misgendering and experiences of discrimination in healthcare settings had a psychological effect on participants, with reports of dysphoria, self-doubt, fear and a trauma response. Discussion Experiences of medical gaslighting, misgendering and discrimination in the healthcare of endometriosis may limit communication between HCPs and patients through limited treatment options being communicated, assumptions in healthcare and participants not feeling safe to disclose their gender identity for a disease that already from cis women’s reports has difficulties in diagnosis and treatment. This highlights additional barriers for gender diverse people to overcome in their healthcare for endometriosis. We recommend that HCPs may benefit from further awareness and training with working with gender diverse people with endometriosis.