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Most likely you and your parents have a lot of questions. We hope that this guide will help answer your concerns. We also have a special guide for your parents. MRKH is a congenital disorder that affects the female reproductive tract. About 1 in every 5, female babies has this condition. MRKH is a syndrome group of symptoms. One of the systems is called the reproductive system, which in female babies includes the uterus, cervix, vagina, fallopian tubes, and ovaries. Girls with MRKH have normal ovaries and fallopian tubes. Most often the uterus is absent or tiny.

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The vaginal canal is typically shorter and narrower than usual or it may be absent. Sometimes, there may be one kidney instead of two. The most common age for MRKH to be diagnosed is when a young woman is between 15 and 18 years old. Your doctor will gently put a Q-tip or gloved pinky finger at the opening of your vagina and then very slowly and carefully place the tip into the vagina to see how deep it is.

These tests do not hurt and are similar to having an x-ray. Usually your doctor will refer you to a specialist who has experience taking care of young women with MRKH. A pelvic ultrasound is usually the first test to check to see if a uterus or womb is present.

This test can also confirm that you have two ovaries and two kidneys. Sometimes a very tiny uterus can be seen. You may need to have an MRI so that your doctor can see your female organs in more detail. Some young women wonder if anyone can tell if they have MRKH. The answer is no.

No one, except you and your gynecologist, can tell that you were born with an incomplete vagina and following treatment, with dilators or surgery, your sexual partner will not be able to feel any difference. If you were born with an incomplete vagina but have a normal size uterus, it is likely that you will be able to become pregnant and carry a baby. If you were born without a uterus or if your uterus is tiny, you will not be able to carry a pregnancy. Adoption is another choice for some couples. Surrogacy: Someone else such as your sister, friend, or another person you choose, could potentially be a gestational carrier.

Gestational carriers are women who agree to carry a pregnancy for a couple. Uterine transplants: This is a very complicated surgery that was first performed in Sweden in The process involves finding a major health care facility that is conducting a clinical trial, then applying to be in the program. Next steps include: IVF procedure where an egg and sperm are harvested and embryos are created and frozen for later use in a transplanted uterus [or gestational carrier], finding a uterine donor or using a deceased uterus, who is a match, having surgery donor and recipientwaiting up to a year then having an embryo is then placed in the transplanted uterus.

Immunosuppressive drugs must be taken by the recipient for the duration while she has the transplanted uterus.

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If all goes well and a healthy pregnancy happens, the baby is delivered by C-section. After the baby is delivered, the recipient has the option to maintain the uterus for a 2 nd child and then the donated uterus is removed. To date, there have been sixteen babies born to women who have undergone a uterine transplant in Sweden.

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The first uterine transplant in the U. Recently there has also been a successful live birth in the USA after transplant from a deceased donor. Uterine transplant surgery for absolute uterine factor infertility AUI is considered an option that is highly experimental and not all of the risks are well known. Science is always moving forward and fertility options are improving every day.

By the time you are ready to have children, there may be more options available to you.

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In general, some women can tell when they ovulate make an egg each month because they feel some discomfort or twinge in their lower belly. Most of the time this mild pain is nothing to worry about as it is caused from normal ovulation. Your gynecologist will be able to tell if you have a small uterus and if it needs to be removed.

If you have vaginal intercourse before your vagina is created using dilators or surgery, sex will likely be very painful. It could cause a tear in your vagina and bleeding. Creating a vagina with vaginal intercourse alone can be done but comes with risks and is usually very uncomfortable. However, there are other ways in which couples can be sexually intimate that do not involve vaginal penetration. When you are ready to become sexually active, having MRKH will not limit your ability to engage in other sexual activities, nor will it limit your ability to experience sexual pleasure.

Keep in mind that every woman, regardless of her age or health issues experiences sexual stimulation and pleasure in different ways. Discovering what you enjoy sexually is an evolving process throughout your life. Thus, women with MRKH who are sexually active are encouraged to explore their sexuality with themselves and with their partner s to learn what feels both comfortable and pleasurable. Most young women find that they need privacy when using the dilators.

There are many reasons why people need to have some time alone: meditating, studying, napping, praying, etc. Many young women diagnosed with MRKH feel pushed into a world of new information and new experiences. Your medical team: your gynecologist, nurses, and social worker, are aware of these feelings and they are trained to be sensitive to your unique situation.

You may be the kind of person who wants a lot of interaction and information at all the visits or you may be someone who just wants the facts and prefers to keep the visits as brief as possible. One thing that you can do to make this process easier is to tell your medical team what approach would be most comfortable for you during your follow-up appointments. The team will do their best to make sure your appointments are as stress-free as possible. An essential part of growing up is becoming more independent as well as setting some boundaries between you and your parents.

When there is a medical issue that requires many appointments and exams, it can be hard to feel a sense of privacy. Additionally, since MRKH by definition involves both you and your parents thinking of you as a sexual person, the stress level in families may be very high at first. For many young women and their parents, the conversations you have been having about your body may feel uncomfortable or like an invasion of your privacy. At the same time, just as you have had to get used to this diagnosis and what it all means, so do your parents.

Your parents may find it helpful to talk to other family members like an aunt or a grandparent, but you should be included in conversations about who will be told about your diagnosis. You can also talk with members of your medical team for help with communicating with your parents. Some young women find it helpful to talk with a parent s or other family members, while other girls prefer to talk with a counselor or a close friend. We know that it can be very helpful to talk with someone your own age that has MRKH. Your medical team may also be able to connect you with another young woman with MRKH, or help you find a counselor if this is something that you are interested in pursuing.

If you have asked yourself this question, you are not alone. Your doctor may order a special blood test that can confirm that you are a genetic female and have 46XX chromosomes. If you are not sexually active, you should use the largest size dilator once a week for about 20 minutes only after you are finished creating your vagina. Like any important decision, it is essential that you get all the information before you make the decision to have treatment. Talking with other women who have MRKH is valuable too. You are in control of your body. You should never be forced or pressured into having treatment by your parents, partner or medical team.

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Rather, they should support you during the treatment process only when you decide the time is right. Your medical team has the responsibility of giving you information and resources to help you understand your reproductive health issues so YOU can make informed decisions. You have the responsibility to learn more about MRKH and to talk with a trusted adult if you are feeling overwhelmed. Chat with us!

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Our MRKH chats are safe places for teens and young women who share a common condition to ask questions, discuss concerns, and offer each other support. Request an appointment online. MRKH Conference: This annual conference is an opportunity for young women ages who have been diagnosed with MRKH, and their families to come together for education and support. Learn more about our conference and how to register.

Key Facts MRKH is a disorder of the female reproductive tract—approximately 1 in 5, females are born with it. Treatment options may include dilation, surgery, or a combination of both. Vaginal area. Tweets by CYWH.

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