AUA Summit - What is Vaginal Agenesis?

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What is Vaginal Agenesis?

Vaginal agenesis is a birth defect that affects few women (1 out of 5,000). But unless it is fixed, it can make sex and having a baby not possible. It occurs when the vagina does not develop fully. Some girls may have a shorter vagina, a remnant of one or lack one altogether. It is not uncommon to have other issues in the reproductive tract, such as an absent or small uterus.

Also, 30 out of 100 girls with vaginal agenesis will have kidney abnormalities. The most common is missing one kidney or abnormal location of kidneys. The two kidneys may also be joined, forming a horseshoe shape. Two of three in this group have problems with the spine, ribs or limbs.

Symptoms

The symptoms of vaginal agenesis are related to a condition called "amenorrhea." Amenorrhea is the lack of menstrual period after puberty has started.

Girls with amenorrhea because of vaginal agenesis can grow normally. But, they may have the following:

  • "Painful amenorrhea." This condition happens to girls with a uterus.
  • "Painless amenorrhea." This condition happens to girls who do not have a uterus and do not have a menstrual cycle.
  • Monthly cramping and abdominal pain. The pain is due to buildup of menstrual flow from the obstruction caused by the missing vagina.

Causes

The cause of vaginal agenesis is not known.

Diagnosis

Because the external sex organs appear normal, vaginal agenesis is often not found until around age 15, when a young girl notes that she has not had her period and seeks medical care. The diagnosis is made by physical exam and imaging. An ultrasound may be used to check the uterus and ovaries. If needed, MRI can show a more detailed picture of the reproductive tract.

Treatment

Most girls start treatment in their teens, but some may want to wait until they are ready to become sexually active.

Self-Dilation

Some young women can form a vagina without having surgery. A very small tube, called a dilator, is pressed against the skin where the vagina should be for about 15 to 20 minutes a day. This is easier after a bath because the skin is soft and stretches well. This works best for girls who have a dimple in the area.

Vaginoplasty

Most young women will need surgery, and how this is done can vary. The vagina can be made with a graft of skin or buccal mucosa (inner lining of the cheek), or with part of the large bowel.

Skin Graft Method

The surgeon takes a thin piece of skin from the patient’s buttocks and places it over a mold. The surgeon then places the skin-mold into a new space surgically created between the rectum and urethra. After surgery, you are likely on bed rest for a week.

Patients treated with a skin graft most often wear a vaginal dilator for three months after surgery. It is taken out for voiding, bowel movements, showering and sex. After three months, you mostly wear the dilator only at night for about six months. Vaginal stenosis, or a tightening of the vagina, is the major drawback of this method.

Bowel Vaginoplasty

This method is more complex. A small segment of the lower colon is removed from the intestinal tract and moved to the pelvis into a new space created between the rectum and urethra. This surgery is often done laparoscopically. Although a long-term mold is not necessary, the hospital stay is longer as the patient awaits return of bowel function.

Usually only one operation is needed with bowel vaginoplasty. Stenosis is uncommon.

More Information

When can I have sex?

Though you should talk to your health care provider before having sex, it is often ok to start two to three months after treatment. Lubrication will likely be needed since the skin will not make the same substances as normal vaginal tissue. Lubrication after bowel vaginoplasty is less of a problem.

Can I have a normal sex life?

Since much of sexual pleasure comes from stimulation of the clitoris (the female erectile structure), and not the vagina, you should enjoy normal sensations and a good sex life.

Will I be able to have children?

Your anatomy will be the biggest factor in whether you will be able to have children. It is very likely that you will be able to become pregnant if your uterus, ovaries and fallopian tubes are normal. Yet, delivery through the new vagina is not possible.

If your uterus is tiny or absent, pregnancy is not possible. If your ovaries are healthy, you can work with fertility specialists on in vitro fertilization using a surrogate mother.

Updated March 2024. 


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