WHAT IS MRKH?
Pictures by Mind Over MRKH.
Words by MRKH Stars Education Co-Ordinator, Lily
MRKH (Mayer Rokitansky Küster Hauser) syndrome, also called müllerian or vaginal agenesis, is a condition in which a person is born with a small or not fully developed vagina and/or a small or completely absent uterus. Most people with MRKH will have a dimple of the lower vagina.
People with MRKH have a 46XX chromosomal pattern, which is typical for babies born female. Their ovaries usually work normally so they experience all the hormonal effects of puberty, menstruation, and menopause, but they never have a period. This condition affects about 1 in 4,500-5,000 newborn female babies. Though individuals are born with MRKH, most do not find out and receive a diagnosis until they are 13-18 because they do not start their periods. Some people with this condition may have issues with other parts of their body including their kidneys, spine, or hearing. This is considered to be MRKH type II.
Sometimes, parents wonder why their child has MRKH, but doctors have not found a cause for this condition. It is important to know that nothing you did during pregnancy or childhood would have caused your child to have this condition.
There is treatment available to make the vagina longer if desired. The two treatment options are vaginal dilation or surgery with vaginal dilation. The first option usually involves using dilators to stretch the dimple to a length that will allow the person to have comfortable sexual intercourse. These dilators come in different shapes and sizes depending on what product you use. There is no set time of how long it takes to create a functioning vagina because it is up to the individual and how often they choose to dilate. Another option is dilating through sexual intercourse. Usually, dilation can stop once a person is having sex regularly. The second option of surgery is usually done if dilation does not work. In most cases, a vagina is created using a piece of tissue from another area of the body. After the surgery, dilation would be continued to keep the vagina open. Always remember that the decision to pursue treatment is yours. You should never feel pressured to dilate or get surgery. If you choose to dilate, you can control how fast or slow you want to go and you have the choice to stop if it becomes too much. Either treatment can be challenging and is mentally, emotionally, and physically taxing so please be gentle with yourself throughout your treatment process.
Most people with MRKH cannot become pregnant, but their ovaries work normally. This means that eggs are being produced, which makes in vitro fertilization (IVF) surrogacy possible. During IVF, your eggs are fertilized with either your partner’s or donor sperm outside the womb and then implanted into another person’s uterus who is the gestational carrier. This can be a friend, family member, or another person you choose who will carry the pregnancy, but you would be the biological parent of that child. Another option for MRKHers is to build a family through adoption. Some people choose not to have kids or they choose to foster children in their home. A new option that’s happening right now are uterine transplants. There have been several successful trials where people with MRKH have been able to receive a uterus transplant and carry one or two pregnancies and give birth. It is still very rare and needs more research, but exciting for the MRKH community and gives many hope for the future. All of these are options for those with MRKH and will depend on the individual.
Oftentimes, receiving an MRKH diagnosis can have a huge impact on mental, emotional, and even physical health. It can be a very isolating condition because most people grew up expecting to have their periods and be able to carry children, so when they’re told they can’t, their whole world seems to fall apart. It can make someone feel different and cause a lot of grief for their future. That is why it is so important for those living with MRKH to know that they are not alone in their struggles. Here at MRKH Stars, our goal is to help those who are young and/or newly diagnosed find a community of people who understand. We know what it’s like to feel like the only one in the world with MRKH which is why we do what we do to love and support you no matter where you are in your journey <3.