# Insights from focus groups with trans and gender-diverse people with endometriosis: stories you tell, stories you don’t

## TL;DR

This study explores how transgender and gender-diverse people with endometriosis experience pain and healthcare challenges, highlighting the need for more inclusive medical care.

## Contribution

The study is the first to focus on the intersection of gender identity and endometriosis symptoms among transgender and gender-diverse individuals.

## Key findings

- Participants reported that gender identity and endometriosis symptoms are deeply interconnected and influence each other.
- Many TGD individuals experience feelings of disconnection and alienation during menstruation and life events like menarche.
- Discrimination and mistrust in healthcare systems lead to withheld health information and concerns about future employability.

## Abstract

Endometriosis is a chronic condition characterised by cyclic pain symptoms that often significantly affect health-related quality of life. Predominantly framed as a “woman's condition”, current research overlooks the experiences of transgender and gender-diverse (TGD) individuals with endometriosis. This jeopardises the right to health for a community that faces historically rooted social and health disparities. This study aims to explore the embodied relationship between gender and endometriosis symptoms among TGD people living with endometriosis. A secondary objective is to examine the accessibility and competence of healthcare systems in addressing the needs of this community. The methodology included two focus group discussions conducted across four focus groups (4 × 2). Fourteen participants representing diverse gender identities, various stages of endometriosis and ages, were recruited online from nine countries across three continents, forming a heterogeneous group. Reflexive thematic analysis identified 15 codes and 7 clusters. The results were organised into themes, following the four embodiment epidemiological notions. Participants reported their gender self-perception and endometriosis symptoms to be interrelated and mutually influential. Feelings of disconnection and alienation were prevalent, particularly during life events such as menarche. Due to mistrust and experiences of discrimination, many TGD individuals withhold critical information during medical consultations. TGD people with endometriosis have unique health needs, e.g. how to combine gender-affirming and endometriosis care, and they are often concerned about future employability. Overall, the study underscores the urgent need to improve healthcare for TGD individuals with endometriosis as a matter of health justice.

Endometriosis is a chronic health condition that causes painful menstruation. So far, it has mostly been studied as a condition that only affects women. Because of this, there is not much known about the experiences of transgender and gender-diverse (TGD) people with endometriosis. This lack of information makes it harder for TGD people to get the care they need. This study explored how gender identity and endometriosis symptoms are connected for TGD people, and how healthcare systems could be more responsive to their needs. Fourteen participants from nine countries took part in group discussions. The researchers analysed the group discussion transcripts and identified common themes among participants. For example, they found that gender identity and endometriosis symptoms strongly influence each other. In fact, when menstruating, many participants felt disconnected or alienated from their body. Specific life events, like the first time they had their period, were particularly challenging for most participants. Participants experienced discrimination in the healthcare system. This led to mistrust in healthcare providers, which meant they hid important health information from doctors, such as the fact that they were taking testosterone. Participants also worried about future employment and long-term consequences of endometriosis. The study concludes that TGD people with endometriosis face serious challenges in getting appropriate care for endometriosis. It is very important to quickly make improvements in healthcare systems to ensure fair, respectful, and appropriate treatment for TGD people.