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Paper short abstract

Endometriosis remains medically and culturally contested. Based on interviews with patients and activist groups in Germany, this paper shows how experiential knowledge negotiates credibility, contests uterus-centered classifications, and opens space for epistemic resilience in contested diseases.

Paper long abstract

Endometriosis is a chronic condition affecting an estimated 10% of people assigned female at birth—over 200 million people worldwide—yet it remains one of the least researched and most underfunded diseases. Despite growing awareness, endometriosis continues to occupy the status of a medically and culturally contested disease. Medically, key aspects of its etiology and disease mechanisms remain unresolved, and the absence of biomarkers means diagnosis relies heavily on patients’ accounts of pain and energy impairment. Historically framed as a gynecological disorder, endometriosis’ uterus-centered definition marginalizes systemic symptoms and reinforces gendered and heteronormative assumptions about pain.

Culturally, stigma and taboos linked to menstruation, sexuality, and fertility shape how symptoms are recognized and legitimized. Chronic pain is frequently dismissed, contributing to diagnostic delays and medical gaslighting. Within this context of uncertainty, many patients become experts in their own condition, engaging in epistemic labor to render symptoms credible through embodied observation and patient communities.

Drawing on STS scholarship from ignorance studies and the sociology of medical classification, and on qualitative interviews with endometriosis patients and activist groups in Germany, this paper examines how endometriosis has been made visible as an object of medical knowledge. It shows how discursive, material, and political factors—including misogynistic theorizing—shape which forms of knowledge are recognized while others are marginalized. By analyzing patient narratives, the paper traces how experiential knowledge challenges the narrow gynecological framing of endometriosis and advances claims for its systemic recognition, while speculating on what epistemic resilience might look like for contested diseases.