Long-Term Psychosocial Outcomes in Japanese Mayer-Rokitansky-Küster-Hauser Syndrome: A Single-Center Study

日本 Mayer-Rokitansky-Küster-Hauser 综合征患者的长期心理社会结局:一项单中心研究

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Abstract

AIM: Vaginal creation enables sexual intercourse in patients with Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome. However, long-term psychosocial outcomes, particularly in Japanese patients, remain underreported. This study aimed to explore the long-term psychosocial outcomes associated with different choices of vaginal creation in patients with MRKH syndrome. METHODS: This retrospective study included 24 patients with MRKH syndrome who were managed at Kyoto University Hospital between 1987 and 2024. Medical records were reviewed to evaluate choices regarding vaginal creation, sexual activity, marital status, partner disclosure, reproductive concerns, and psychological well-being. RESULTS: Of the 24 patients, 22 had explicitly planned to undergo vaginal creation using surgical methods or nonsurgical Frank dilation, and 19 actually initiated the procedure, although two discontinued it. Among the 17 patients with a formed neovagina, 11 reported sexual intercourse. Seven patients were married, five of whom married partners they met after vaginal creation. One patient delivered via gestational surrogacy. Four patients, including one who declined vaginal creation, developed delayed psychological distress related to femininity and perceived infertility. CONCLUSION: Gynecological outpatient care often serves as the primary source of long-term psychosocial support for patients with MRKH syndrome. Continuous empathetic follow-up beyond the period of vaginal creation may be essential to address evolving emotional and social challenges.

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