‘I never see anyone like myself represented in discussions about endometriosis’: priorities of LGBTQIA + endometriosis patients in New Zealand
Katherine Ellis, Wayne Armour, Rachael Wood
Abstract
Limited information is available regarding the experiences and perspectives of LGBTQIA + patients internationally, and no literature exists for New Zealand. Twenty-eight LGBTQIA + endometriosis patients took part in asynchronous, online text-based discussions about their experiences navigating endometriosis diagnosis and management in Aotearoa New Zealand. Their qualitative responses were coded in an iterative thematic manner. The mean delay to diagnosis of this cohort was 10.2 ± 5.6 years from symptom onset, longer than previously reported delays in Aotearoa New Zealand. Participants shared a strong discomfort with the predominant focus of endometriosis management strategies on penetrative sex and pregnancy, and the sense they were dismissed if prioritising these functions was not their priority. Several potential improvements to current treatment and care for LGBTQIA + endometriosis patients were generally agreed upon by the cohort, including research to better understand a practice approach for managing the symptoms of transmasculine patients; expanding the management strategies for patients who are not prioritising fertility and penetrative sex; improving awareness of LGBTQIA + people and experiences amongst medical practitioners to reduce homophobia, transphobia, misogyny, misgendering and mistreatment in care; and the development of gender-neutral spaces for the support of patients who feel uncomfortable in cisgender women-centric endometriosis spaces.