Abstract
Purpose:
This study aimed to evaluate the experiences of transgender and gender-diverse (TGD) individuals assigned female at birth with endometriosis.
Methods:
This was a mixed-methods study conducted from August 2024 to March 2025. TGD individuals assigned female at birth with endometriosis were recruited through LGBTQ+ forums, mailing lists, and clinical sites. Surveys and semi-structured interviews were conducted. The survey included demographic questions and the Endometriosis Health Profile-30 (EHP-30), scored 0–100 (100 = worst health status). Interview transcripts were coded with ATLAS.ti, and codes were grouped into themes.
Results:
Among 29 participants, the mean participant age was 29.5 ± 6.8 years. The mean age of symptom onset was 15.5 years (standard deviation 6.2). Most identified as nonbinary (
n
= 18, 62.1%). The highest EHP-30 dimension was “control and powerlessness” (65.2). Interview themes included the following: (1) impact of pain on well-being and identity, (2) barriers to trust in health care providers, and (3) desire for collaborative care. Participants highlighted a desire for gender identity representation, along with racial representation, in endometriosis support groups. Although most reported that the EHP-30 captured their experiences, some stated that the intersection of their TGD identity and symptoms was missed.
Conclusion:
TGD individuals assigned female at birth with endometriosis face unique barriers that impact health care experiences and diminish the quality of life. Health care systems must focus on gender inclusive provider education, care models, and support groups that acknowledge the distinct challenges TGD individuals face in accessing endometriosis care.