“Why Aren’t You Listening?”: How Experiences of Endometriosis, Medical Dismissal, and Psychological Distress Should Influence Assessment and Interventions

Résumé fourni par la source

Background/Objectives: Endometriosis is a chronic gynecological condition affecting approximately 10% of women of reproductive age and is associated with chronic pain, fatigue, infertility, and reduced quality of life. Beyond its physical burden, delayed diagnosis, healthcare dismissal, and inadequate support may contribute substantially to psychological distress. In line with growing efforts to promote mental health and wellbeing within healthcare settings, this study explored women’s experiences of healthcare services and the psychological impact of living with endometriosis. Methods: A qualitative study was conducted using thematic analysis of 2500 publicly available Twitter/X posts shared by accounts self-presenting as women discussing experiences of endometriosis. Results: Three overarching themes were identified: (1) Institutional Invalidation of Women’s Endometriosis Experiences, (2) Living with the Multidimensional Burden of Endometriosis, and (3) Reimagining Endometriosis Care. Participants described chronic pain, reproductive uncertainty, and significant emotional distress that were frequently intensified by delayed diagnosis and experiences of not being believed or taken seriously within healthcare settings. Accounts suggested that suffering was shaped not only by disease symptoms but also by interactions with healthcare systems that undermined the legitimacy of women’s experiences. Conversely, validation, empathy, and collaborative communication were associated with improved wellbeing and engagement with care. Participants advocated for greater awareness of endometriosis, earlier diagnosis, and more integrated models of support. Conclusions: Endometriosis should be understood as a biopsychosocial condition whose impact extends beyond physical symptoms alone. The narratives analyzed highlight how psychological distress may be amplified by experiences of invalidation, delayed recognition, and fragmented care. Improving outcomes requires timely diagnosis, patient-centered healthcare interactions, and the integration of psychological support within multidisciplinary endometriosis services.

Ce résumé expose les affirmations des auteurs. BNTIC ne l’interprète pas comme une validation indépendante des résultats.