Transgender and non-binary people’s experience of endometriosis

Abstract

There is a lack of research on gender diverse people’s experiences with endometriosis. We explored the experience of 11 transgender and non-binary people with endometriosis using phenomenology. We collected data through multiple interviews and diaries and constructed two themes using hermeneutic analysis: (1) Unhomelikeness of Living with Endometriosis and being Gender Diverse, and (2) Towards a Homelikeness of Living with Endometriosis as a Gender Diverse Individual, which we discussed in relation to Svenaeus Phenomenology of Medicine. Unhomelikeness is an experience of disconnection with our bodies and being-in-the-world as a result of living with a chronic disease. We show how gender diverse people with endometriosis may have additional layers of unhomelikeness due to further diagnostic delays, endometriosis symptoms that may trigger gender dysphoria and experiences with treatment that are not inclusive of their gender identity. We advocate for additional support and awareness for gender diverse people with endometriosis.