"Don't give up, advocate for yourself": A pilot study examining healthcare experiences of people with Mayer Rokitansky Küster Hauser syndrome (MRKH)

Study objective: Mayer Rokitansky Küster Hauser syndrome (MRKH) is characterized by the underdevelopment or absence of the uterus and upper vagina. Navigating healthcare interactions may present unique challenges for those with MRKH as there appears to be sparse clinical education and research available to healthcare providers. Additionally, limited research exists on the healthcare experiences of people with MRKH. This pilot study investigated the diagnostic journeys, post-diagnosis experiences, current healthcare interactions, and attitudes toward the healthcare system among individuals with MRKH.

Methods: Participants with MRKH residing in the United States or Canada took part in semi-structured interviews on their MRKH-related healthcare experiences. Interview transcripts were thematically analyzed.

Results: People with MRKH conveyed that: 1) MRKH was not well known by healthcare providers and they were seldom provided with information and resources about MRKH, 2) they often needed to advocate for themselves in the healthcare system to receive adequate care, 3) sensitivity, inclusion, and knowledge from healthcare providers was invaluable, and 4) healthcare-system level barriers prohibited access to adequate care.

Conclusions: Information and resources for MRKH patients should be age appropriate, patient-centered, trauma informed, and locally based. Providers should have access to evidence-based information and resources about MRKH, which includes knowledge of local specialist physicians, mental health specialists, pelvic health physical therapists, and other allied health professionals. Providers should also limit assumptions and use sensitive and inclusive language when communicating with patients around MRKH diagnosis, education, and development of treatment plans. Lastly, strategies for mitigating healthcare barriers should consider those with MRKH.