Gender Diverse, Autoethnographic Perspective of Epistemic Injustice During Endometriosis Care.

Abstract

Objective: To examine the epistemic injustice experienced by a gender diverse individual during diagnosis for chronic pelvic pain and endometriosis.

Design: Autoethnography.

Setting: Five health care institutions across four northeastern states.

Participant: I am a White, non-Hispanic nurse with private health care insurance who was assigned female at birth (AFAB) and identifies as gender diverse. I have chronic pelvic pain and endometriosis.

Methods: I used autoethnography to situate my experience within broader social, cultural, and institutional contexts. My personal journal, text messages, e-mails, health records, and memory are the sources of data that I used. I reflexively and critically engaged with my data through reading, memo writing, and thematic analysis to balance autobiography and cultural critique.

Results: I experienced many psychological consequences of a delayed diagnosis of endometriosis as a gender diverse health care professional who was AFAB. Despite my significant health care literacy and access, my persistent pain was repeatedly minimized, which led to profound self-doubt and internalized medical invalidation. I found that gender misrecognition in clinical care and documentation compounded my experiences of dismissal and exclusion. Humor with friends often served as a coping mechanism but did not address the aftereffects of frequent misgendering in clinical environments.

Conclusion: Transgender and gender nonconforming individuals may be doubly affected by epistemic injustice when they seek treatment for chronic pelvic pain. Whereas many challenges are faced by cisgender women with endometriosis, my experience highlights the distinct intersection of chronic pain, delay in diagnosis, and transgender and gender nonconforming invisibility in health care systems and support spaces. Nurses can address these disparities through targeted interventions to promote inclusion.