MRKH: Treatment Options

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1in5000If you’ve been told that you have MRKH and your vagina is incomplete or absent, you have the following options:

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

Waiting or doing nothing: YOU have control of your body. Deciding to create or not create a vagina should be your decision and if you decide that you want to, when should be your decision too! If you are not planning to have vaginal intercourse, it is not something you need to do. If you plan to have vaginal intercourse now or in the future, creating a vagina is something you might want to consider.

Aside from doing nothing, there are three basic approaches to help you expand or create a vagina. If you’re thinking about treatment, you should definitely consider using dilators first. All of the surgical options require general anesthesia and the use of dilators after the operation, 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 Boston Children’s Hospital does not recommend the Ingram method because it is 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 smallest dilator is similar to the size of a slender tampon. 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 placed into the vagina. If you’re a patient at Boston Children’s Hospital and select this method of treatment, Dr. Laufer’s nurse educator will teach you how to use the dilators. You will take one home with you and use it 2-3 times a day for about 15- 20 minutes.

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 you work with a gynecology program that has at least an 85-95% success rate for helping their patients create a functional vagina. You 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, you 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 do I need to see my gynecologist?

If you decide to use dilators to create your vagina, you will be scheduled to return about once every 1-2 months depending if you have to travel far. It is VERY important to keep your appointments with your gynecologist so he/she can check your progress to see if you are applying pressure in the right place and at the correct angle. As your vagina stretches, your gynecologist will give you the next (slightly bigger) dilator.

Surgery to create a vagina: A vaginoplasty involves using tissue or skin from another area of your body (such as your bowel, or your buttocks) to create a vagina.

  • McIndoe procedure: A vagina is created with a skin graft, usually from your 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 a dilator 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 creating 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. Young women who have this procedure usually experience chronic vaginal discharge requiring the 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 physician 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 is not commonly done in the United States.
  • Davydov procedure: The Davydov operation is a type of surgical procedure to create a vagina using a patient’s own peritoneal lining. The peritoneum is a membrane that lines the walls of the abdominal and pelvic cavities. While the patients is under anesthesia, an incision (cut) is made where the vaginal opening should be. Another incision(s) is made near the belly button to allow a thin instrument to be inserted into the peritoneal cavity. The peritoneal lining is then pulled down and stitched in place at the vaginal opening. The top of the newly created vaginal canal is then sewn closed. The caginal space is then packed with gauze. The gauze is typically removed about two days after the operation. After the packing is removed, the patient must use various size vaginal dilators a few times a day for several months or until she becomes sexually active. The goal is not to obtain additional length or width but to maintain the new (newly created) vagina and prevent scarring. Most women who have this procedure stay in the hospital overnight for observation and then return for follow-up visits within the 7 to 10 days after surgery.
Make sure you are working with a team of experienced medical professionals who are sensitive to your feelings and concerns. When deciding what treatment is best for you, it’s important to remember that dilators are the standard of care and should be tried before surgery is considered. With that being said, you should never be under any pressure. The choice to have treatment or not should always be yours!