Illness experience and (unmet) needs of women with Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH): a qualitative analysis of an online forum

Objective: Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) is a congenital condition characterized by the underdevelopment or complete absence of the uterus and the upper part of the vagina. Diagnosis is commonly made during adolescence, a sensitive period for psychophysical development, following the absence of menstruation. Having MRKH syndrome can have a profound and multifaceted psychosocial impact that characterizes these women’s subjective experiences, although it continues to be qualitatively understudied. This article explores the lived experience of women with MRKH spontaneously recounted on an online support forum. The aim was to gain insight into the features of the syndrome experience to understand deeply the emotional and social impact of the condition and the individual needs expressed online. Methods: Using a naturalistic observation stance, data was collected from an online support forum for MRKH women and systematically analyzed using thematic analysis. Results: Four main interconnected themes are identified: the impact of being diagnosed with MRKH, the difficult interaction with the medical environment, challenging social relationships, and the unmet needs of MRKH women. Conclusion: A multidisciplinary and person-centered approach that provides effective and sensitive management of the condition and its psychosocial implications, is essential. Recommendations for future research and practical clinical implications for healthcare professionals are proposed.