Navigating stigma before and after an endometriosis diagnosis: A qualitative study on medical stigma and healthcare-seeking behavior with endometriosis in a German sample

Sarah Eitze, Sophia Rose, Sabine Best
In: Health Psychology Open · 2026 · vol. 13 · doi:10.1177/20551029261469234 · W7223694596
Qualitative OA: gold CC0
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Qualitative interviews with German women reveal that medical stigma erodes trust and delays care, while diagnosis brings mixed validation and distress, highlighting the need for empathetic healthcare communication.

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Abstract

Endometriosis is a chronic and often misunderstood condition that exposes affected individuals to public stigma. This qualitative interview study explored how experienced public stigma by healthcare experts shapes women’s self-stigma before and after diagnosis and if women change health behaviors after public stigma was experienced and/or self stigma developed. In-depth interviews were conducted with recently diagnosed participants, focusing on public and self-stigma and their impact on health behaviors. Findings show that early and repeated exposure to stigma eroded trust in medical professionals, led to withdrawal from care, and fostered hyper-independence. Receiving a diagnosis provided both validation and emotional strain—strengthening self-confidence for some, while reinforcing distress for others. The study underscores the need for improved awareness and stigma-sensitive communication in healthcare to foster patient-centered, empathetic support and better outcomes for individuals with endometriosis.

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