Home > Health Guides by Topic > Gynecology & Reproductive Health > Vaginal Agenesis & MRKH > Vaginal AgenesisVaginal Agenesis: A Guide for Teens
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What is vaginal agenesis?
You may have just learned that you have vaginal agenesis, and you probably have lots of questions. It is normal to feel confused, scared, sad, and overwhelmed, especially if you are a teenager. Most likely your parents will have questions and concerns too. The following answers to the most frequently asked questions about vaginal agenesis may be helpful. If we have not addressed your question or if you need something explained in a different way, we recommend that you talk with your doctor. Remember, vaginal agenesis is a condition that can be corrected.
Vaginal agenesis is a congenital disorder of the female reproductive tract. Congenital means that it is present at birth. Vaginal refers to the vagina, which is one of the female organs. Agenesis means failure of a part to develop or grow. It occurs in about 1 in every 5,000 female infants. Although we don't know the cause, we do know that as a female baby grows in her mother's uterus (womb), certain systems develop. One of these systems is called the reproductive system.
It includes all the female organs, such as the uterus, vagina, fallopian tubes, and ovaries. The reproductive system is formed during the first few months of life inside the uterus. Vaginal agenesis occurs when the reproductive system doesn't finish developing. When this happens, the vagina can be shorter than usual or missing. The uterus may be missing or smaller than usual. The ovaries (the organs that make hormones) are normal. Sometimes, there may be one kidney instead of two. Vaginal agenesis is also called Mayer-von Rokitansky-Kuster-Hauser's syndrome. The name is so long because it's named after all of the doctors who discovered and reported this medical condition.
How do doctors diagnose vaginal agenesis?
The most common age for vaginal agenesis to be diagnosed is between 15 and 18 yrs. Since the ovaries produce the normal hormones that cause girls to go through puberty, most girls have breast and pubic hair by this time. Usually what brings girls to their doctor is the fact that they have not had their period yet. Vaginal agenesis is the more common congenital cause for not having your period. There can be other reasons for this, such as your body isn't ready or your body weight is low.
Your doctor will ask questions about when your body started to change and if you have had pain in your belly or any vaginal bleeding. He or she may also ask you if you are sexually active and if you experience pain with intercourse. Next, it is likely you will have an exam to check the outside of your female organs. If your doctor thinks you might have vaginal agenesis, he/she will probably order a test called an ultrasound or an MRI. These tests do not hurt and are like having an x-ray. In most cases your doctor will refer you to a pediatric and adolescent gynecologist. This is a medical doctor who has special training in young women's reproductive health.
What can an ultrasound or MRI show?
An ultrasound is often the first test that is done to check if your uterus is present. This test can also show that your ovaries and kidneys are present. Sometimes a very tiny uterus can be seen. It is called a uterine remnant. Other times, it is necessary to have an MRI, which stands for "magnetic resonance imaging." An MRI may give a better picture to help the doctor evaluate your vaginal agenesis.
Is there a way to correct vaginal agenesis without surgery?
Yes.
After you have received the advice of a specialist, you will probably have questions about whether or not vaginal agenesis can be corrected. Your vagina can be reconstructed without having an operation. The doctor will teach you how to do this by applying pressure near the area where your vagina should be. In the beginning, you will learn how to apply pressure over this area with a very small tube, called a dilator. You hold this dilator against your skin and apply pressure for about 15-20 minutes a day. This is more comfortable after you have taken a bath because your skin is soft and stretches more easily. Gradually, you will begin to notice an indentation. This means you have been applying pressure with the dilator on a regular basis and you have made progress!
It is VERY important to keep regular appointments with your doctor during this time so he or she can make sure you are applying pressure in the right place. It is also important to keep your appointments because as you create your vagina, your doctor will give you the next size dilator to use. These dilators are made of plastic and come in graduated sizes (small to bigger). You're probably wondering how long it will take to create your vagina. The average amount of time it takes, if the dilators are used daily, is about 3-6 months. Sometimes it can take up to a year, especially if you don't use the dilators daily. For more information please click to Instructions on the Use of Vaginal Dilators.
When should I start to create a vagina?
When you start is really up to you. Most girls decide they are ready to start this process around age 16 or 17. You may decide to wait to begin this process until some time in the future when you want to become sexually active.
What if the dilators don't work or I just can't use them?
Most girls can learn to use a dilator. If you have any questions or wonder if you are using the dilators correctly, be sure to ask your doctor. In some cases, if your doctor feels that little progress has been made, he or she may discuss the option of surgery with you.
Can you tell me about the surgical procedure?
The most common procedure performed by gynecologists, to reconstruct a vagina, is called a McIndoe procedure. A skin graft is taken from your buttocks, and a vagina is created using a vaginal mold. Doctors who have followed young women who have had this surgery have found that these young women are happy with the results, months and years later.
How will having vaginal agenesis affect my sexuality?
Some young women wonder if anyone can tell if they have vaginal agenesis. The answer is no. No one, except you and your doctor, can tell that you were born without a vagina and following treatment, with dilators or surgery, no one will be able to tell that you have had a re-constructive procedure. Just in case you were wondering, much of sexual pleasure comes from the stimulation of your clitoris, and not from the vagina. What this means is that once your vagina is created and you decide to become sexually active, you will have normal sensations and enjoyable sexual relations.
Will I be able to have children?
If you were born without a vagina but have a normal size uterus, it is likely that you will be able to become pregnant and deliver a baby.
If you were born without a uterus or if your uterus is tiny, you will not be able to "carry" a pregnancy. Since your ovaries are normal and make eggs, an egg can be fertilized by your partners' sperm. A surrogate mother could then carry the pregnancy and deliver your baby. Surrogate mothers are women who agree to carry a pregnancy for a couple. You and the baby's father would be the biological parents of this child. Adoption is another choice for some couples. Fertility options are improving every day. By the time you are ready to have children, you may have more options available to you.
Is there anyone else I can talk to about vaginal agenesis?
Some young women find it helpful to talk with a parent(s), 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 age who has gone through this. Ask your doctor or nurse about how to arrange this.
If you think you may have vaginal agenesis and would like to be evaluated, you can contact the Center for Young Women's Health at Children's Hospital Boston by calling (617) 355-2994 or clinical services in the Gynecology Program at Children's Hospital Boston by calling (617) 355-7648.
Updated 5/24/2006
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