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

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.