MRKH Guide for Parents and Guardians:

Treatment Options

Intro	Helping your Daughter
Treatment Options	Talking with Siblings
Accepting your Daughter's Diagnosis	Commonly Asked Questions
Taking Care of Yourself

If your daughter has been told that she has MRKH and her vagina is incomplete or absent, she has the following options:

1. She can do nothing.
2. She can create a vagina without surgery, using dilators that expand and stretch her existing vagina over time, using intermittent pressure. This is a nonsurgical procedure.
3. She can have a surgical procedure, or “vaginoplasty”, which involves surgery (using a skin graft from another part of her body).
4. She can have a procedure that involves a combination of an operation and dilation with continuous pressure: Vecchetti procedure.

Waiting or doing nothing

Your daughter ultimately has control of her own body. Deciding to make or not make a vagina should be her decision. If she decides she would like treatment, “when” should be her decision too! If your daughter plans on having vaginal intercourse at some point in the future, making a vagina is something she may wish to consider.

Aside from doing nothing, there are three basic approaches to expand or create a vagina. If your daughter is thinking about treatment, she should definitely consider using dilators first. All of the surgical options require general anesthesia and the use of dilators after each procedure, therefore surgery is not a quick fix, or a way to avoid the need for using dilators.

Accepted Standards of Care: The American College of Obstetricians and Gynecologists recommend vaginal dilators without surgery as the optimal treatment for creating a vagina. Health care providers recognize that this treatment is very effective and is noninvasive (does not have the risks of surgery or anesthesia).

Dilators

Sometimes the use of dilators is referred to as the Frank Method, named after the first health care provider who became famous for introducing a treatment that a young woman could do on her own, in the privacy of her own home. The original dilators were made out of glass. In the early 1980's, Dr. Ingram created different size plastic dilators along with a bicycle seat that attached to them. Young women were then taught how to dilate using this special seat on a stationary bicycle. The Gynecology Program at Children's Hospital Boston does not recommend the Ingram method because it's difficult and awkward to use.

Today, hard plastic dilators have replaced glass dilators. There are different kinds of dilators available, but the most widely prescribed dilators come in a set with different sizes ranging from XS-L. The dilators look very similar to tampons. Starting with the smallest dilator, a young woman learns how to hold it and apply pressure to stretch her vagina. In the beginning, most of the dilator is used as a “handle” (as it can only go in so far). Later, as the vagina stretches, more of the dilator can be inserted into the vagina. If your daughter is a patient at Children's Hospital Boston and selects this method of treatment, Dr. Laufer's nurse specialist will teach her how to use the dilators. She will take one home with her and use it twice a day for about 20 minutes. She will likely return for follow-up appointments once a month. As her vagina stretches, Dr. Laufer will give her the next size dilator, which will be slightly wider. The length of time it will take to create a vagina will depend on how consistent your daughter is with using the dilator. Typically it takes about 6-12 months but can take as little as 4-6 months if dilation is done consistent, 2-3 times a day.

Is dilator treatment successful?

Dilator treatment is very successful. However, there is great variation in the success of dilator treatment, mainly related to the teaching and expertise of the health care providers who teach their patients this method. Make sure that your daughter is followed by a gynecology program that has at least an 85-95% success rate for helping their patients create a functional vagina. Both you and she should ask the gynecologist how many patients he/she treats monthly/yearly who have vaginal agenesis (incomplete or absent vagina) and ask about their success rate. If the program or health care provider that you are working with has a low success rate, your daughter will likely get frustrated during treatment, have a poor chance of success using dilators, and thus be at a higher risk of needing a surgical procedure.

How often will my daughter need to see her gynecologist?

Generally, your daughter will be asked to return for monthly follow-up appointments so that her progress can be monitored. It's VERY important that your daughter keeps her appointments with her gynecologist so he/she can check her progress (whether she has decided to use dilators or have surgery). If she decides to use dilators, her gynecologist will need to check to see if she's applying pressure in the right place and at the correct angle. As her vagina stretches, her gynecologist will give her the next (slightly larger) dilator.

Surgery to create a vagina

A vaginoplasty involves using tissue from another area of the body (such as the bowel, or buttocks) to create a vagina, surgically.

• McIndoe procedure: A vagina is created with a skin graft, usually from the buttocks (bottom) or with a special skin-like material and a vaginal mold. Young women who have this procedure must stay in bed in the hospital after the procedure for about a week so that the newly created vagina will heal. After the operation, a soft dilator must be worn all the time for about 3 months, taking it out only to use the bathroom. Even though a vagina is created faster with surgery, it's still necessary to use dilators afterwards.
• Williams procedure: This procedure involves the creation of a vaginal “pouch”. It's sometimes used when other surgical procedures have failed. This procedure is more popular in Europe than in the United States. Dilators are necessary following the procedure, but for only about 3-4 weeks, instead of up to 6 months (which is more typical with the McIndoe procedure). The down side with this procedure is that the angle of the newly created vagina can be awkward and the cosmetic appearance may be poor.
• Bowel vagina: This is a major operation which involves making a vagina using a section of the bowel. The recovery involves 4-6 weeks of healing from major surgery, and dilators will need to be worn afterwards. Another disadvantage of this procedure is that your daughter will likely have chronic vaginal discharge and need to wear a pad all the time.

Laparoscopy-Vecchietti procedure: The Vecchetti procedure combines the use of dilators and a surgical procedure. This technique (named after the health care provider who developed it) involves applying a traction device to the outside abdomen (stomach) of a young woman.

This is done during a laparoscopy while the patient is under general anesthesia. At the same time, a plastic bead (about the size of an olive) is placed in the vaginal space, and is held with string that is threaded up through the vagina, into the abdominal cavity, and out to the traction device (which is secured to the skin outside of the abdomen). The vagina is formed using continuous pressure, 24 hours a day. The tension is set by turning the “crank” that is on the outside of the abdominal wall. The tension pulls the plastic bead upwards, creating vaginal length. The vagina can be created in about 7-10 days, but requires a long hospital stay to complete the process. Afterwards, a second procedure with anesthesia is necessary to remove the equipment.

It's very important to understand that this procedure also requires the need to use vaginal dilators. Additionally, the traction device is awkward and often uncomfortable. The Vecchietti procedure is popular in Europe, but it's not commonly done in the United States.

Make sure your family is working with a team of experienced medical professionals who are sensitive to you and your daughter's feelings and concerns. When deciding about what treatment is best for her, it's important to remember that dilators are the standard of care and should be tried before surgery is considered. With that being said, your daughter should never be under any pressure. The choice to have treatment or not should always be hers!

Previous

Next: Accepting your Daughter's Diagnosis

Written and reviewed by the CYWH Staff at Children's Hospital Boston

Updated: 10/20/2011