Specialized Care for People with MRKH Syndrome
The MRKH Care Center at Cincinnati Children’s is the first of its kind in the United States. This unique center, established in 2022, provides integrated, comprehensive care for children, adolescents and young adults with MRKH (Mayer-Rokitansky-Küster-Hauser) syndrome. Our clinic utilizes a care model where patients and their loved ones meet with our team in a coordinated clinic setting; our team understands concerns and is here to help.
Understanding MRKH
MRKH syndrome —also known as Müllerian agenesis or vaginal agenesis—is a diagnosis that affects the female reproductive system. People with MRKH have an underdeveloped uterus (womb), cervix and upper vagina. About half of the people with MRKH also have issues outside the reproductive system, including the kidneys, spine and (rarely) ears or heart.
Like many other medical conditions, MRKH doesn’t just affect a person physically. Feelings of confusion, sadness or grief can occur when a person learns of their diagnosis. The diagnosis may lead to questions about their future health and well-being.
It is crucial for people with MRKH to have a team of experts on their side. At the MRKH Care Center, we surround patients with the support and resources they need to understand how MRKH affects them and to live a full, meaningful life.
Pediatricians and general gynecologists may initially diagnose a person with MRKH and refer them to Cincinnati Children’s. Our team includes a pediatric gynecologist, pelvic health physical therapist, clinical health psychologist, social worker and nurse care coordinator, along with research and program coordinators. They work together to:
- Provide a definitive diagnosis and holistic therapies
- Provide personalized care tailored to each patient’s and family’s needs
- Educate patients and families about MRKH
- Empower and support patients throughout their health journey
- Offer opportunities to participate in research studies that help scientists better understand and improve care
We maintain a referral network of other specialists at Cincinnati Children’s who are familiar with MRKH and how it can affect different body systems. These experts include orthopaedic doctors, kidney doctors, bowel and bladder surgeons, geneticists and audiologists. As needs arise, we can refer patients to these specialists for care.
A Compassionate Team of MRKH Experts
Every appointment at the MRKH Care Center includes a visit with our pediatric gynecologist, pelvic health physical therapist, psychologist and social worker. Our providers are committed to making these visits as comfortable and relaxed as possible.
Most patients with MRKH are diagnosed around age 14-15, when they do not start having periods after typical puberty (this absence of periods is called amenorrhea). From diagnosis to ongoing care, the experience of having MRKH, like other conditions, can be a journey. There is no need to rush any aspect of care. We encourage patients to learn about MRKH at their own pace. Our team is here to support patients and families every step of the way.
