Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome is a congenital birth defect characterized
by absence or incomplete development of the Müllerian-derived tissues of the female
reproductive tract that is associated with renal, skeletal, cardiac, spine and ear
anomalies. Affected Individuals often experience isolation, loneliness, shock and
depression and MRKH can affect self-esteem and increase the risk of eating disorders
and phobic anxieties. In 2017, we conducted an online anonymous survey of 1337 patients,
parents, partners and providers on their experiences with MRKH through diagnosis and
treatment, to better understand the effects of MRKH on sexuality, relationships and
mental health. This survey indicated that people with MRKH experience sadness, fear,
shock and shame during diagnosis and treatment. Respondents indicated that access
to health care providers who had knowledge of MRKH eased their experience and that
involvement in online support groups gave them a sense of community. The purpose this
study was to analyze this patient-centered data to determine future MRKH research
priorities.
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