“Belittled” and “Broken”: Distressing Medical Interactions in Endometriosis Healthcare: A Mixed Methods Study

Distressing medical interactions appear common during endometriosis healthcare; however, the types, prevalence, and impacts are not well understood. 468 people with endometriosis completed an online survey about distressing medical interactions and potential impacts. Following template and content analysis, 80.8% of the sample reported distressing endometriosis-related medical interactions. These events represented two themes: Distressing Procedures (experienced by 30.6% of the sample), and Harmful Communication (64.1%). Of those who experienced these distressing interactions, 79.4% reported impacts to their care seeking. Interactions most often occurred with general practitioners and gynecologists. Trauma-informed, patient-centered endometriosis care is needed, focusing on individualized care, believing patients and avoiding damaging communication and behaviors, to prevent psychological harm.