Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome results from the incomplete development of the female reproductive tract and leads to primary infertility and inability to engage in sexual intercourse without medical intervention. MRKH is classified under the umbrella of disorders of sex development (DSD) or intersex (I) conditions, which are included within the LGBTI designation. Although those affected by MRKH can have biological children through artificial reproductive methods and gestational surrogacy, MRKH remains an emotionally devastating diagnosis, and many receive minimal psychological support. The ramifications of confronting infertility and being born differently as a teenager haunt patients well into adulthood. Treatment typically focuses on creating a vaginal canal that is capable of sexual intercourse. These treatment options were developed with minimal input from the patient population.
We propose to create a patient-focused network and engage key patient groups (e.g., newly diagnosed patients; patients trying to create a family; patients confronting their infertility; parents; significant others; etc.) to identify areas in need of comparative research that will lead to improved clinical and psychological care for all who are affected by MRKH, including family members. Key stakeholders include patients, family members, partners/spouses, clinicians, gynecologists, psychologists, and allied healthcare workers. Psychosocial consequences of MRKH include decreased self-esteem, feelings of shame and isolation, difficulty relating to peers, and anxiety regarding sexuality. Addressing psychosocial and physical outcomes has the potential to change lives through asking affected individuals what they think the next steps should be to improve clinical and psychological care for MRKH.