Navigating Stigma and Self-Perception: A Qualitative Study on Medical Stigma, Diagnosis, and Coping with Endometriosis

Endometriosis is a chronic condition that is often misunderstood and stigmatized. This study explores the impact of public stigma on women* with endometriosis, focusing on its effects before and after diagnosis. Using a qualitative approach, we conducted in-depth interviews with women* who received an endometriosis diagnosis within the past three years. Participants shared their experiences with public stigma, self-stigma, and its influence on health behaviors and disease coping. The findings reveal that greater and earlier exposure to public stigma led to decreased trust in medical professionals, withdrawal from the healthcare system, and the development of hyper-independence. Receiving a diagnosis came with benefits and risks for the affected women*. While some women develop greater self-confidence through the validation of their symptoms, others experience negative emotional effects. This study highlights the need to raise awareness of endometriosis in the medical field and to develop strategies for reducing patients' experiences of stigma in order to ensure access to empathetic and patient-centered care. It underscores the need for healthcare professionals to be better trained in recognizing and avoiding stigmatizing behaviors during the diagnostic process and in patients coping with the disease. Such efforts could mitigate the negative consequences of stigma and improve patient outcomes.