Uterine Vulnerability: A Lived Experience Response to Endometriosis

In this article, I examine the uterus as an object in relation to endometriosis and the epistemological struggle of sufferers to have their pain taken seriously. Defined by endometrial-<i>like</i> tissue outside the uterus, endometriosis affects multiple organs, causes severe pain, and is often undiagnosed for years. While outsiders frequently describe the condition, patient voices remain marginal. Using illness autoethnography and my experience in Germany, I show how delegitimized embodied knowledge shapes the identify work of coping with endometriosis. Medical gaslighting, stigma, limited literacy, and shame increase dismissal of symptoms and vulnerability. Recognizing the gendered framings of endometriosis can reshape how people cope with it.

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Publication Details

Journal
Medical Anthropology
Published
2026-01-22
DOI
https://doi.org/10.1080/01459740.2026.2617654
Primary Topic
Endometriosis Research and Treatment
Type
article
Field-Weighted Citation Impact
0.00
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article

Uterine Vulnerability: A Lived Experience Response to Endometriosis

Caroline Meier zu Biesen
Medical Anthropology
Endometriosis Research and Treatment
article

Uterine Vulnerability: A Lived Experience Response to Endometriosis

Caroline Meier zu Biesen
article en

Abstract

In this article, I examine the uterus as an object in relation to endometriosis and the epistemological struggle of sufferers to have their pain taken seriously. Defined by endometrial-<i>like</i> tissue outside the uterus, endometriosis affects multiple organs, causes severe pain, and is often undiagnosed for years. While outsiders frequently describe the condition, patient voices remain marginal. Using illness autoethnography and my experience in Germany, I show how delegitimized embodied knowledge shapes the identify work of coping with endometriosis. Medical gaslighting, stigma, limited literacy, and shame increase dismissal of symptoms and vulnerability. Recognizing the gendered framings of endometriosis can reshape how people cope with it.

Medical Anthropology
Vrije Universiteit Amsterdam (NL)
Quality Education
Openalex Percentile: Top 82%
Endometriosis Research and Treatment
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