Uterine Vulnerability: A Lived Experience Response to Endometriosis

Caroline Meier zu Biesen, Meier Zu Biesen C
Medical anthropology · 2026 · pp. 1–18 · doi:10.1080/01459740.2026.2617654 · PMID:41569002 · W7125421342
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This autoethnographic study explores how delegitimized embodied knowledge, medical gaslighting, and stigma shape the identity and coping mechanisms of individuals experiencing endometriosis.

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The paper examines the uterus and patients’ epistemological struggle to have their pain taken seriously in the context of endometriosis, using illness autoethnography grounded in the author’s lived experience in Germany. It describes endometriosis as endometrial-like tissue outside the uterus that affects multiple organs, causes severe pain, and is often undiagnosed for years, while noting that patient voices remain marginalized compared with outsider descriptions. The author finds that delegitimized embodied knowledge, alongside medical gaslighting, stigma, limited literacy, and shame, shapes identity work and increases vulnerability and symptom dismissal. This paper is centrally about endometriosis — a lived-experience autoethnographic account focusing on “uterine vulnerability” and how patients’ pain is (or is not) recognized.

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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-like 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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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-like 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. and the epistemological struggle of sufferers to have their pain taken seriously. Defined by endometrial-like 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. | Original language | English | |---|---| | Pages (from-to) | 1-18 | | Number of pages | 18 | | Journal | Medical Anthropology | | Early online date | 22 Jan 2026 | | DOIs | | | Publication status | E-pub ahead of print - 22 Jan 2026 |

Keywords

- Autoethnography, chronic living, endometriosis, gender bias, Germany, uterine vulnerability Fingerprint Dive into the research topics of 'Uterine Vulnerability: A Lived Experience Response to Endometriosis'. Together they form a unique fingerprint.Cite this - APA - Author - BIBTEX - Harvard - Standard - RIS - Vancouver

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Condition tags

endometriosis

Citation neighborhood

Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

References (53)

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