When menstrual periods do not come as expected by age 15 or 16, some teens are diagnosed with MRKH (Mayer-Rokitansky-Kuster-Hauser syndrome), which is an uncommon disorder in which the uterus and the vagina fail to develop properly.
The diagnosis of MRKH, also known as vaginal agenesis, is often an unknown entity to the teenager and family and can cause them all to experience feelings of disbelief, grief and loss.
For a young woman facing this unexpected diagnosis, future fertility might not be the biggest immediate concern. More likely she will initially struggle with understanding the consequences of the diagnosis and how this may affect her in relationships, dating and her future.
Parents tend to quickly realize that their daughter will not be able to carry her own children and what sadness that may cause her throughout her life (and them as well). We always discuss with families that there are many ways to become a parent and that several options exist to help a woman achieve the goal of motherhood if that’s what she wants in her future.
There are several things we suggest for young women with MRKH and their families, to be able to live life to the fullest.
Don’t rush any decision making – Being born with MRKH is a lifelong journey, and a young woman should take her time considering her treatment choices regarding vaginal development. One common treatment called vaginal dilation is a method of gradually stretching the vagina, and is quite successful. It does take time, effort and commitment as it can take several months to develop the vagina. Surgery for vaginal development is another option with its own risks and benefits, and although some women assume that surgery is the quickest solution, it usually requires dilation and long term care too. There are several different surgical methods. Be sure to talk through all of your options with your care team, and take as much time as you need to feel certain about your decision. The only person who can determine when it is the right time to address these issues is you!
Seek counseling – Parents and daughters have sometimes mixed feelings initially about meeting with our special counselors. Talking about sexuality and sexual health is uncomfortable for most parents and teenagers and when a young woman is coping with MRKH it can be even more intimidating. Counselors can help teens and families work through these conversations and are an important part of your care team. You can meet with them in private or with parents or partners. Your doctor can give you recommendations for counselors with experience with MRKH.
Respect privacy – We emphasize to parents that although MRKH affects the whole family, it is the daughter’s decision if, when, and with whom that information can be shared. It is important for parents to find comfort and support by talking with a relative or friend, but we recommend that parents ask their daughter’s permission before discussing her health with anyone.
Also, while it’s important for teens to share experiences and struggles with peers, young women with MRKH should also really think about who they choose to confide in about their health. In this age of social media, adolescents are not always protective enough of their friends’ privacy. Unwanted sharing of personal information could be very hurtful to a young woman learning to cope with MRKH. She should choose carefully which friends or family members she can trust to be supportive and to keep her personal information private.
Find support – For women with MRKH, and for their parents as well, talking to other people with similar circumstances can be powerful. Ask your care team about support groups they recommend, or if there are other parents or resources they can connect you with.
For more information, or to learn about the Pediatric and Adolescent Gynecology clinic at University of Michigan C.S. Mott Children’s Hospital, call 734-763-6295.
Elisabeth Quint, MD, received her medical degree at the University of Leiden in the Netherlands. She completed a residency in obstetrics and gynecology at the U-M Medical Center. Dr. Quint is co-director of the Pediatric and Adolescent Gynecology Clinic and a member of the Disorders of Sex Development care team at University of Michigan Health System.
The University of Michigan’s Women’s Von Voigtlander Women’s Hospital is a leader women’s health care. Consistently ranked among the America’s top gynecology programs by U.S. News & World Report, U-M is committed to unsurpassed patient care.