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Doctors Must Gain Better Understanding of Female Genital Mutilation

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July 13, 2000 -- Her name is Waris Dirie, and her words are chilling. "The prevailing wisdom in Somalia is that there are bad things between a girl's legs," she writes.

"A woman is considered dirty, oversexed, and unmarriageable unless those parts -- the clitoris, the labia minora, and most of the labia majora -- are removed. Then the opening is stitched shut, leaving only a small opening and a scar where the genitals had been."

This happened to Dirie at the age of 13, when, at the hands of a gypsy woman -- and with her mother at her side -- she underwent the ritual cutting that young girls have endured for centuries.

In her autobiography, Desert Flower, Dirie describes her experience in having the procedure euphemistically called "female circumcision" -- more aptly called female genital mutilation (FGM) by the World Health Organization (WHO) and other agencies working toward eradicating the practice.

In these passages, taken directly from her book, Dirie tells what happened to her.

Using a broken razor blade, cleaned only by spit, the gypsy woman began the cutting, says Dirie. "The next thing I felt was my flesh being cut away," she writes. "I heard the blade sawing back and forth through my skin. The feeling was indescribable. I didn't move ... I prayed, 'Please, God, let it be over quickly.' Soon it was, because I passed out."

When she awoke, the woman was piercing holes through her skin, and then she "poked a strong white thread through the holes to sew me up ... the pain was so intense that I wished I would die."

Dirie was left with openings no bigger than a matchstick -- one for urine, one for menstrual blood, she says. Soon after, she fled into the desert, leaving her family behind in Somalia.

Today, more than 20 years later, Waris Dirie has found a life in the international arena as both a supermodel and a spokeswoman against the ritual of female genital mutilation. She is the U.N. Population Fund's special ambassador, joining its fight.

"Friends have expressed concern that a fanatic will try to kill me, since many fundamentalists consider FGM a holy practice demanded by the Koran. However, this is not the case; neither the Koran nor the Bible makes any mention of female genital mutilation."

"It still bothers me deeply," she writes. "Besides the health problems that I still struggle with, I will never know the pleasures of sex. I feel incomplete, crippled, and knowing there's nothing I can do to change that is the most hopeless feeling of all. When I imagine more little girls going through what I went through, it breaks my heart and makes me angry."

WHO estimates that each year, 2 million girls are at risk for undergoing such mutilation. Most live in 28 African countries, although some live in Asia and the Middle East. They are also increasingly found in Europe, Australia, Canada, and the U.S. -- primarily among immigrants from these countries. Those who practice female genital mutilation believe it ensures virginity, fertility, and a good marriage.

There are four types of female genital mutilation, according to WHO. In some cases, the prepuce -- the covering fold of skin -- is removed. In other cultures, the clitoris is removed along with part or all of the labia, or lips of the vagina.

And, as in Dirie's case, the clitoris and all surrounding tissue -- the entire external female genitalia -- are amputated and the two sides sewn together. It often happens -- without anesthesia or sterile conditions -- at any age before puberty.

Very often, the girl suffers infection, tetanus, shock, hemorrhage, and even death afterward. In the long term, she faces the real possibility of chronic pelvic infection, scar tissue, abscesses, incontinence, sexual dysfunction, and difficulty with childbirth.

In Boston, Sudanese-born Nawal M. Nour, MD, a gynecologist practicing at Brigham and Women's Hospital, started the hospital's African Women's Health Practice a few years ago.

"A lot of Somalis in the Boston area had been hearing about me. They were all immigrants, refugees who had their procedures done in Africa. Many were hesitant to go to another doctor," she tells WebMD. "Basically, they wanted to go to a doctor they felt comfortable with and not make an issue out of it." Nour is also an instructor at Harvard Medical School and director of Brigham and Women's obstetrical residency program.

For some of the women, a trip to a primary care physician for a cough, a chronic headache, or abdominal pain becomes embarrassing when -- during the "complete physical" -- the doctors see their scars.

"They would make remarks like, 'Were you burned? This is terrible! What is this?'" says Nour. "It's totally understandable that they would react this way if they've never heard about it before. Part of my goal is to educate health care providers so they don't get shocked."

Things are changing, she says. Like Dirie, Nour has made it her personal mission to open the world's eyes to the practice of female genital mutilation. Nour has worked with the American College of Obstetricians and Gynecologists and other physician groups to educate doctors.

Doctors must be versed not just in the health risks of female genital mutilation, but also in "the historical background, the reasons why it's perpetuated, to truly understand it," she tells WebMD.

"Once there is an understanding, they can approach the patient with sensitivity. It's a very, very difficult practice for health care providers to accept, and I don't expect them to understand it," she says. "They need to deal with their own issues of anger, frustration, and horror of this practice before they enter the room with the patient."

For those women who have had the more extreme procedure that includes cutting away part or all of the external genitalia and sewing the opening shut, some of their problems may be solved through plastic surgery, says Nour.

"It depends on how much has been removed. If she's had the [most extreme procedure], the clitoris has been removed. She basically has a flat sheet of skin that covers the urethra, and there's a very small opening left for urination and menses. If the clitoris has been removed, it cannot be returned," she says. "You can make it look close to what it did before. Sometimes I make an interior incision, and it tends to heal extremely beautifully ... The most important thing to know is that girls, when they are circumcised, are without any anesthesia, so the girl is kicking and screaming, so sometimes tissue gets missed."

Women come to her, she says, with hopes of stopping pain. "Some come with pain in intercourse, pain in menses, chronic infections ... [Obtaining] sexual pleasure -- that's not really the goal. Some don't want problems when they deliver a baby," Nour says. "For some Somalis, there is this big fear that because they've [had the most extreme procedure], they will automatically have to have cesarean section. Being circumcised is not an indication for C-section."

Lewis Wall, MD, regularly travels to the African countries of Nigeria, Uganda, Zaire, and Ethiopia to treat childbirth-related problems in women who have had female genital mutilation. For gynecologists, he says, simply examining a patient who has had all her genitals removed and the opening sewn shut is difficult. "You can't get anything into the vagina to look or to feel the pelvic organs," he tells WebMD.

Labor and delivery presents its own problems, says Wall. "You can check the position of the baby by doing a rectal exam ... or use ultrasound. If the vagina is sewn completely shut, you can't assess the progress of labor except by monitoring activity externally," he says, adding that physicians can feel the abdomen for contractions. "And if those contractions are of sufficient intensity and duration that she's in active labor, the problem is going to be whether to do a surgical procedure to reopen vagina ... but then you run the risk of secondary injury to the urinary tract if it's unclear what you're cutting.

"The big issues come up when they want everything sewn back up," Wall tells WebMD. "It is illegal in this country. You would normally repair any lacerations in the posterior part of the vagina, but the really contrary part is meeting somebody's request to close the whole thing," he explains.

"The number of women we see with a complete excision of the genitalia is a minority, but because it is the most radical, most horrific form of circumcision, it raises a lot of issues," he adds.

"The real purpose of routine gynecological care is to look for problems, prevent cervical cancer, which is the No. 1 cause of cancer death of women worldwide. If a woman is sewn up, if cervical cancer is a real concern, we may have to conduct the exam under anesthesia and open up the vagina. It just depends on how big the opening is."

In some cases, the woman may have only one small opening, and the urine goes from the urethra into the vagina before it leaves the body, which can take up to 30 minutes. These women will have more urinary tract infections than others.

Risk of HIV and AIDS is high in this population, experts say. While women who have had female genital mutilation live in a tightly constricted social environment that allows them fewer sexual encounters, the men they live with may have wide access to sex partners, says Wall.

Heightened risk may also come from scrapes women receive when having sex, says Margaret Brady, RN, a family nurse practitioner, AIDS/HIV researcher, and associate professor at Hostos Community College in the Bronx, N.Y.

"They've been sewn up so tight, so when they have intercourse the vaginal mucosa is broken," she tells WebMD. "Also, because of instruments used in the initiation rites, and ... [the use of] the same instruments on several girls, that alone could be one of the means of transmission."

Paul Root Wolpe, PhD, professor of bioethics at the University of Pennsylvania School of Medicine in Philadelphia, points out that any form of female genital mutilation is illegal in the U.S.

He advocates "pushing families from this very gross way of circumcising to a more ceremonial one where they take a drop of blood or where they remove a little piece of the prepuce of the clitoris, which is the equivalent of the foreskin. The law does not permit the latitude to try to encourage lesser forms. The mistake of that law, as well intended as it was, is that [for] people who have a cultural conviction about this, it leaves them no latitude and does not encourage them to do something more symbolic and much less disfiguring."

However, pediatricians who see a child who has been ritually circumcised or hear about impending circumcision should "try to prevent [it] in the U.S., because it is illegal and because it is a form of child abuse," Wolpe tells WebMD.

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