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Physician Update - Treating all facets of a rare malformation: vaginal agenesis
Treating all facets of a rare malformation: vaginal agenesis
Date: March 1, 2011
When constructing vaginas for girls born without them, gynecologist Lisa Kolp also tackles psychological concerns.
“Girls who are 13 or 14 are shocked to find out they don’t have a vagina and even more stunned if they learn they don’t have a uterus,” says Kolp. “That can lead to some intense, emotional ups and downs.”
Almost all of the people diagnosed with vaginal agenesis have never heard of it. A congenital disorder of the reproductive system that affects roughly one in 5,000, it occurs when the canal connecting the cervix to the vulva stops developing.
The condition typically is diagnosed when a girl enters puberty and fails to begin menstruating. Those patients who retain a uterus may be treated first in an emergency room because of abdominal pain resulting from blocked menstrual blood. Patients without a uterus may see a specialist like Kolp only after years of hormonal treatment don’t produce a period.
“Unless you’re looking for it—which most people aren’t, and most pediatricians don’t—it’s not usually picked up,” she says.
Although most gynecologists might see one case during their entire careers, Kolp treats several patients each year. The neovaginoplasty she performs uses skin grafts taken from the buttock. After making an incision where the vagina would normally develop, she inserts the grafts to create the canal. A balloon-like device is then put into place for seven days to keep the newly formed vagina open while it heals.
When the patient is discharged, she must use a tampon-shaped vaginal dilator to maintain the opening. During this phase of healing, Kolp sees her patients frequently to closely monitor their progress. Because of the amount of self-care required with this procedure, she tries to delay the operation until patients become sexually active in their late teens or early 20s. Intercourse should eventually help maintain the new vagina.
Kolp is also working on a device to facilitate the early stages of vaginal construction. With the help of a Hopkins biomedical engineer, she is developing a soft, hollow device that can be inserted after the skin graft heals and safely left in the new vagina for months at a time.
Such a stent would be particularly beneficial for some of her youngest patients. One, a 12-year-old from another state, was MedEvac’d to Hopkins after the blockage of her menstrual blood was mistakenly attributed to an imperforate hymen. When the error was discovered during surgery, the patient was sent to Kolp.
“We did the procedure at an earlier age than I would have liked—at the beginning the girl was so scared that she wouldn’t let us touch her—but we went ahead because her mom and aunts are nurses, and that gave her a skilled support system for afterwards,” Kolp says. “Now she has a functional vagina and is having normal periods.”
Call 1-800-765-5447 for urgent referrals and consultations.