Understanding of the position of patients with Mayer–Rokitansky–Küster–Hauser syndrome revealed by uterus transplantation research in Japan

Dear Editor, Uterus transplantation (UTx) has become an alternative treatment for women with uterine-factor infertility after the first successful delivery following UTx by a Swedish group in 2014. This remarkable achievement was widely featured in the Japanese media. In Japan, we have been conducting basic research on non-human primates since 2009 and have published many papers on the results. 2, 3 Thus, UTx has become widely known in Japan, where the procedure is expected to be performed. Mayer–Rokitansky–Küster–Hauser syndrome (MRKH) is a rare congenital female genital malformation, a condition that has not been widely recognized in Japan. Being informed of congenital uterine-factor infertility during puberty has a tremendous impact on future life and identity formation for the patients. Patients could not go to the hospital after being notified because sufficient support could not been provided, given that the gynecologists themselves were not familiar with the condition. However, as the Japanese public became more interested in UTx, MRKH syndrome, whose patients are candidates for UTx, became widely recognized in Japan. As a result, patients had more opportunities to revisit the hospital to get to know their own bodies, undergo vaginoplasty, and obtain information regarding future child-raising. In addition, several patient groups of the volunteer parties for this disease have been established, and opportunities for exchanging information, such as recognizing one’s own body and sharing the worries of romance and having a child, have begun to increase among patients. Although UTx has not yet been performed in Japan, UTx research has revealed the position and circumstances of patients with MRKH syndrome. It is a great advantage that has enabled patients to visit a hospital for accurate diagnosis and counseling for MRKH syndrome and one’s own body. Furthermore, it has become clear that physical and psychological care interventions for these patients are essential, and gynecologists need to be more aware and supportive of the disease. UTx basic research is being conducted in many groups in Asia, but the clinical application is still limited. 4 However, it is expected that further recognition and development of this research will lead to the establishment of multifaceted interventions for MRKH patients, such as physiological support, counseling, and notification of the disease. The awareness of the position of MRKH patients by public and gynecologists in the wake of UTx research must be of greater significance to the patients than the realization of UTx.