Date of Award

January 2026

Document Type

Thesis

Degree Name

Medical Doctor (MD)

Department

Medicine

First Advisor

Iman Berrahou

Abstract

Endometriosis has typically been described in cisgender women; however, endometriosis also affects transgender and gender-diverse individuals. Among transgender men undergoing gender-affirming hysterectomy, 32% had pathology-confirmed endometriosis. The purpose of this thesis was to evaluate transgender and gender diverse individuals’ experiences with endometriosis or chronic pelvic pain through a qualitative approach.

Transgender and gender diverse individuals with endometriosis or chronic pelvic pain 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 key concepts.

Among 29 participants, the mean participant age was 29.5 ± 6.8 years. Mean age of symptom onset was 15.5 ± 6.2 years. Most identified as non-binary (n=18, 62.1%). The highest Endometriosis Health Profile-30 dimension was “Control and Powerlessness” (65.2). Interview themes included: 1) impact of pain on well-being and identity, 2) barriers to trust in providers, and 3) desire for collaborative care. Participants highlighted a desire for gender identity representation, along with racial representation, in endometriosis support groups. While most reported the Endometriosis Health Profile-30 captured their experiences, some stated the intersection of their gender identity and symptoms was missed. In conclusion, transgender and gender diverse individuals with endometriosis or chronic pelvic pain face unique barriers that impact healthcare experiences and diminish quality of life. This study underscores the need for gender-inclusive provider education, care models, and support groups that acknowledge the distinct challenges transgender and gender diverse individuals face in accessing endometriosis and chronic pelvic pain care.

Comments

This thesis is restricted to Yale network users only. It will be made publicly available on 07/14/2027

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