Severina Lemachokoti was asleep in her family's mud hut in Kenya when her mother woke her up before 6 a.m. The 12-year-old ― home from a nearby boarding school for Christmas ― heard a crowd of women outside.

"Bring her out. Let her come," she heard them say.

Outside the hut, she saw a fire burning. Her older sister stood holding a stick. "I knew that she would hit me if I cried or said anything," Lemachokoti recalls. That's when it dawned on her what was going to happen.

I cried, but I didn't open my mouth. And then I passed out. Severina Lemachokoti

"I had heard at school that other girls were being cut in the village in a big ceremony, but it never occurred to me that one day I would go through it, too," says Lemachokoti, who is now 36 and lives in Wichita, KS.

The women removed her clothes, sat her down, poured cold milk and water all over her, and held her arms and legs. "That is when they cut my body," she recalls. They used a razor to make several cuts. She heard a woman say, "Make sure it's all cut out."

"I cried, but I didn't open my mouth. And then I passed out."

Female genital mutilation or cutting, also called FGM or female circumcision, is partial or complete removal of the external genitalia or other intentional injury to the female genitalia for nonmedical reasons. Despite global outrage over the practice, it's still happening worldwide ― including in the United States.

The United Nations aims to end female genital mutilation globally by 2030. But until then, and for years after, women around the world who have already been mutilated will need health care that addresses the medical and psychological consequences that can last a lifetime.

"These women's stories will break your heart. They are unimaginable, more than we can comprehend," says Wayne Bloodworth, MD, an OB/GYN and founder of The Surgery Center for Female Genital Mutilation in Atlanta, the first nonprofit surgery center in the U.S. that offers surgical reconstruction after mutilation free of charge. He is hoping to make more doctors aware of the issue. "Of the 500,000 living in the U.S. who have already been mutilated [or are at risk], there are precious few [doctors] that know how to take care of them," Bloodworth says.

An estimated 200 million women worldwide have been cut. In more than 30 African, Middle Eastern, and Southeast Asian countries where it is a custom, the ritual mutilation is intended to convey purity, beauty, cleanliness, and marriageability. But it is also meant to curb what is perceived as otherwise unchecked sexual desire and ensure that women will be faithful wives.

The Reuters news agency reported last year that a Moscow clinic was mutilating young girls. In Colombia, an estimated two out of three newborn girls in the indigenous Emberá tribe, which occupies Panama and Ecuador as well, are cut.

These women's stories will break your heart. They are unimaginable, more than we can comprehend. Wayne Bloodworth, MD

In the U.S. some girls are whisked away to their parents' home countries to be mutilated during summer break in a practice called "vacation cutting." Though U.S. federal law prohibits traveling with the intent for a girl's genitals to be cut, the law is difficult to enforce and the custom continues. Some are mutilated in the United States by members of their cultural or ethnic community.

American-born women, who have no connection to African, Middle Eastern, or South Asian countries, have fallen victim to the practice, too. It's not linked to any one religion. Christian, Muslim, and Jewish women, and practitioners of indigenous religions, are among the survivors.

Renee Bergstrom, a 74-year-old white woman brought up in the Lutheran church, had her clitoris removed by a doctor in North Dakota when she was 3 years old. When Bergstrom's mother had expressed concerns that the toddler was masturbating, the doctor suggested removal of the clitoris would solve the problem.

"What I remember is my mother standing at the end of the table, and I was feeling ― I don't know how a 3-year-old feels betrayal ― but I felt like she somehow had let me down," Bergstrom, who now lives in Minneosota, recalls.

Bergstrom isn't the only woman of her background who has been mutilated. "Since my story came out, a couple of other white Christian women have told me their stories," she says.

While Bergstrom is unlike the majority of other survivors, she shares at least one thing in common with most. "After my mother took me home, she told me never to talk about it again." Because of the secrecy around the practice, many survivors think that they or the women in their community are the only ones who've been through it.

Medical Complications of a Brutal Tradition

Female genital mutilation can take many forms. It can include removal of the external clitoris and/or the clitoral hood; removal of the internal and/or external labia; stitching the vaginal opening almost completely closed (a procedure called infibulation), leaving a small opening for menstrual blood and urine to pass; or any combination of these.

The circumstances in which it takes place are as varied as the procedure itself. Some women tell stories of cutting that took place in a doctor's office, in the home of a relative, or in a public ceremony. Some girls are held down on a bed or told to stand over a toilet. Victims of the practice are typically under 15 years old, and some are infants or toddlers.

Some girls bleed to death during genital mutilation. For those who survive, depending on the type and extent of mutilation, the procedure can lead to numerous medical and psychological problems, including loss of sexual pleasure; pain during sexual intercourse; inability to have intercourse; other long-term pain; difficulty urinating and menstruating; frequent, recurrent infections; difficulty becoming pregnant; and birth complications that could include death of the mother or the child.

Because scar tissue doesn't stretch easily, even women whose vaginas are left open after cutting can have significant difficulty delivering a baby vaginally.

"Even if a woman has none of these physical consequences, she might still have mental health issues, such as anxiety, depression, or PTSD," says Ranit Mishori, MD, who is director of global health initiatives at Georgetown University School of Medicine in Washington, D.C., and an expert in the medical and psychological consequences of female genital mutilation.

These mental health issues may arise from the trauma of the cutting itself, which is painful and typically done without anesthesia, or from other gender-based injustices. "[Female genital mutilation] happens on a continuum of human rights violations," says Mishori. "It often happens alongside child marriage, forced marriage, rape, and domestic violence."

But, she adds, not every girl who has been cut grows up to suffer psychological consequences from it. "We hear about the survivors and the anti-FGM advocates," says Mishori, "But many women are happy with it. It's their cultural heritage. They are proud of it."

Treatment for Visible and Invisible Wounds

For women who aren't happy with what happened, surgery may be able to help.

For women whose vaginas have been surgically closed, reopening, in a procedure called defibulation, is medically recommended. "Defibulation is simply the promotion of health in infibulated women. It solves all the obstetrical and urinary problems," says Jasmine Abdulcadir, MD, an OB/GYN and sexologist who runs a clinic in Geneva for women who have been mutilated.

If you can keep girls in school, when they are in high school, they can say, 'I am old enough, I can speak on my own behalf, and I don't want to disfigure my body.' Severina Lemachokoti

A handful of surgeons around the world, including Bloodworth and Abdulcadir, perform clitoral reconstructive surgery for survivors of genital mutilation. Different from defibulation, reconstruction is not always medically necessary. For women who have pain during sex, particularly because of nerve damage caused by removal of the clitoris, the procedure can relieve pain. The procedure may also bring back or improve sexual sensation. But the post-surgical pain can also re-traumatize women and remind them of when they were cut.

Contrary to what many people believe, the external clitoris is only the tip of a much larger, mostly internal organ. Only a small piece of this organ is removed in genital mutilation. "There is a residual stump under the skin," Bloodworth says. "You can find it under the scar tissue and free it up from the scar tissue." The surgeon then exposes enough of the clitoris to create a new external portion. As the clitoral tissue contains numerous nerves, women can expect the newly exposed segment to have sensation.

But for some women, just the knowledge that they, in fact, still have a clitoris can be enough to restore sexual function. Sex therapy, physical therapy, and education can help a woman experience sexual pleasure without reconstructive surgery. Before having clitoral reconstruction at her clinic, Abdulcadir says, women must have 3 months of psychosexual therapy.

"In the end, most of the women ― about 60 or 70% ― do not go for the surgery because their needs are met by education on their anatomy and sex therapy, just like many patients whose genitals have not been cut."

There is a misconception, Abdulcadir adds, among many women who have been cut, "that uncut women are hypersexual." When women who have been cut learn that this is not true, they may realize that their desire and pleasure are in fact normal.

Some women want reconstructive surgery regardless of the alternative, nonsurgical ways to address the effects of genital mutilation. "It can be an act of defiance or self-empowerment," says Mishori. "They took something away from me, and I am putting it back. Or it could be about improving body image."

Unprepared Doctors

Women who do not live in the country where they were cut, including those who live in the U.S., face not only medical complications but also doctors who may not know how to treat them.

Fifteen years ago, in her second month as a doctor, Mishori had a patient who was in active labor. "But her anatomy didn't look like anything I had seen before," she says. She had a difficult time doing an exam. "There was not much of an opening for the baby to come out." Mishori later learned that the woman was from the East African nation of Djibouti, where an estimated 93% of women undergo genital mutilation and infibulation.

Bergstrom, who retired as a patient educator at the Mayo Clinic in Rochester, MN, partnered with a Somali survivor of genital mutilation to create an educational brochure for doctors. "It's for pregnant Somali women who are infibulated to give to their doctors to plan their deliveries and prevent unnecessary C-sections," she says.

Doctors' reactions can mean the difference between a woman continuing to come in for care or not. "Patients tell me, 'I felt like a freak when I was seen by my last doctor,' " says Bloodworth. Avoiding health care can make the consequences of mutilation worse.

As immigrant and refugee numbers rise in developed countries around the world, doctors will see more female patients who have been cut. Several initiatives around the world aim to prepare medical students and doctors to care for these patients. "Doctors need to know that if they see a woman from, say, Somalia or Eritrea, that there's a good chance she's had genital mutilation. They need to know how to talk to them and what resources are available for them," Bloodworth says.

Ending Female Genital Mutilation

Last year, a U.S. federal court declared a decades-old ban on female genital mutilation in the U.S. unconstitutional. While the ruling didn't condone the practice, it said that states, not Congress, have to enact laws against the practice. To date, 27 states have laws that explicitly outlaw female genital mutilation. Others could potentially prosecute cutting as child abuse.

Some countries, including Lemachokoti's native Kenya, now have laws against the practice. Lemachokoti, appointed by the Kenyan government as the anti-female genital mutilation coordinator for her tribe, was charged with spreading the word of the new law to some of the most remote parts of her country.

The first person in her village to earn a master's degree, Lemachokoti became a teacher and returned to work at her primary school until she moved to the U.S. in 2016. At her school, and at other area schools, she stressed the importance of keeping girls in school and ending child marriage, which can have the collateral effect of reducing female genital mutilation.

"We were losing a lot of young girls at the ages of 9, 10, 11, 12 to female genital mutilation and early marriage," she says. "If you can keep girls in school, when they are in high school, they can say, 'I am old enough, I can speak on my own behalf, and I don't want to disfigure my body.' "

Lemachokoti has never received any medical care to undo the physical effects of her mutilation. She hasn't had therapy for the psychological effects either, but she counts her advocacy work as therapeutic. "I am a helper, but no, I never got any help myself."

She says she still carries a lot of pain and resentment. "At the back of mind, I think, 'They stole something from me.' "

WebMD Article Reviewed by Neha Pathak, MD on March 08, 2019

Sources

Severina Lemachokoti, Anti-FGM advocate, Wichita, KS.

Ranit Mishori, MD, director, global health initiatives, Georgetown University School of Medicine, Washington, D.C.

Renee Bergstrom, Anti-FGM advocate, Lanesboro, MN.

Wayne Bloodworth, MD, founder, The Surgery Center for Female Genital Mutilation, Atlanta.

Jasmine Abdulcadir, MD, FGM Outpatient Clinic, University Hospital of Geneva, Switzerland.

28toomany.org: "Female Genital Mutilation/Cutting: A Quick Guide for the Media."

Population Reference Bureau: "Women and Girls at Risk of Female Genital Mutilation/Cutting in the United States."

Human Rights Watch: "Q&A on Female Genital Mutilation."

World Health Organization: "Female Genital Mutilation."

United Nations Population Fund: "A Silent Epidemic: The Fight to End Female Genital Mutilation in Colombia."

The AHA Foundation: "Vacation Cutting: An Illegal Practice Still Running Rampant."

Obstetrics and Gynecology: "Posttraumatic Stress Disorder Relapse and Clitoral Reconstruction After Female Genital Mutilation."