What is Vaginal Agenesis?

Symptoms

What are the Symptoms of Vaginal Agenesis?

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. However, they may experience 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

What Causes Vaginal Agenesis?

The cause of vaginal agenesis is not entirely known.

Some scientists believe the condition is caused by the failure of certain organs (mullerian ducts) forming during fetal development.

Diagnosis

How is Vaginal Agenesis Diagnosed?

Because the outer sex organs appear normal, it 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 womb and ovaries. If needed, MRI can show a fuller picture of the reproductive tract.

Most girls do not know about this issue until their teen years. But some cases will be found during infancy, often during an exam or test for other problems.

Treatment

How is Vaginal Agenesis Treated?

Many ask at what point a girl should think about having a vagina created. But when she starts this process is up to her. 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 have a vagina made 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 to make a vagina. Artificial skin has also recently been recommended. The surgeon then makes a small cut where a vagina would normally be, between the rectum and the urethra, and places the mold so the graft will attach to make the inside of a vagina. After surgery, you are likely on bed rest for a week. A catheter is placed into the bladder so urine can drain. The mold is removed after 7 days.

Bowel Vaginoplasty

This method is more complex. The night before surgery, you must empty your bowels to remove stool and bacteria. During surgery, part of the lower colon is removed through a cut in the belly. One end of the bowel is then closed while the other stays open. The colon is sewn onto the vaginal remnant, acting as a vaginal opening. After the surgery, a mold is placed in the new vagina for 3 days. A catheter is placed in the bladder through the urethra so that urine can drain.

After Treatment

What Can Be Expected After Treatment?

Patients treated with a skin graft most often wear a vaginal dilator for 3 months after surgery. It is removed for voiding, bowel movements, showering and sex. After 3 months, you mostly wear the dilator only at night for about 6 months. Vaginal stenosis, or a tightening of the vagina, is the major drawback of this method.

Only 1 operation is needed with bowel vaginoplasty. You will be seen 3 weeks after surgery and again in 3 months. You may have a tightening of the vagina. If this occurs, dilation will be performed while you are under anesthesia. Using a dilator at home is not needed.

Patients have many questions about life after treatment.

When can I have sex?

Though you should talk to your health care provider before having sex, it is often ok to start 4 to 6 weeks 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. Since the changes are internal, no one will be able to tell that you have had treatment.

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. It is unlikely that you will be able to go through pregnancy by yourself if your uterus is tiny or absent. But if your ovaries are healthy, you can work with fertility specialists on in vitro fertilization using a surrogate mother.