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Address correspondence to: Saifuddin T. Mama, Rowan University Cooper Medical School, Cooper University Healthcare, 101 Haddon Avenue, 5th Floor, Suite 503-A, Camden, NJ 08103
The World Health Organization defines female genital mutilation/cutting as any medically unnecessary procedure involving partial or total removal of the external female genitalia or other injury to the female genital organs. It is a violation of human rights and associated with serious complications and lifelong impact on health. This review article summarizes for the pediatric and adolescent care provider the incidence worldwide, the impact of cultural practices, appropriate screening and diagnosis, interventions, and treatment, along with legal and ethical issues.
The World Health Organization (WHO) defines female genital mutilation as any medically unnecessary procedure involving partial or total removal of the external female genitalia or other injury to the female genital organs.
Female genital mutilation carries no medical benefit, should never be performed by health care providers, and is now viewed internationally as a human rights violation and a manifestation of violence against women and children, outlawed in much of the world. It is illegal in the United States. Children and adolescents are predominantly affected.
Multiple terms are used among those who practice the rite and those who care for affected women, such as circumcision, excision, khatna, sunna, and many more. The most inclusive term, used by the U.S. government and international health and human rights organizations, is female genital mutilation/cutting (FGM/C). However, this term is a mouthful during an encounter with a patient, and use of the word “mutilation” can contribute to a sense of alienation and mistrust of the medical profession. In the provider-patient setting, a mutual term should be agreed on by both parties.
The practice is believed to have originated in Ancient Egypt. The earliest writings on female circumcision, by Herodotus in the 5th century BC, described this custom practiced by the Ethiopians, Phoenicians, and Hittites. From there, it might have spread to the Red Sea costal tribes, to Sudan, Ancient Greece, and Ancient Rome.
Lightfoot-Klein H: Prisoners of Ritual: Some Contemporary Developments in the History of Female Genital Mutilation. Worcester, MA, Female Genital Cutting Education and Networking Project, 1991
As recently as the 1950s, clitoridectomy has been used in the United States and Western Europe to treat hysteria, masturbation, epilepsy, and other presumed mental disorders.
It is a cultural practice not tied to any specific ethnicity, religion, or race, with the belief that it preserves virginity, improves hygiene, increases marriageability, and is a rite of passage.
show that FGM/C is practiced in over 30 countries, mainly African and Middle Eastern countries, and worldwide, 200 million girls and women have been subjected to FGM/C (Fig. 1). Every year, another 3 million girls are at risk, a number expected to rise as the populations of these countries continue to grow.
In the United States, migration from countries where FGM/C is actively practiced has led the Centers for Disease Control (CDC) to estimate that over 500,000 women and girls are either affected by or at risk of undergoing FGM/C (Fig. 2).
The number of affected girls and women varies widely across states and metropolitan areas, with the greatest numbers in “gateway” cities and states, such as California and New York, from where immigrants may fan out across the country to join groups of families from their country of origin.
Due to increasing immigration from countries where FGM/C still occurs, these numbers have likely grown. The CDC is currently conducting pilot investigations at the community level to better estimate the prevalence and incidence of FGM/C in the United States.
Fig. 2Women and girls at risk of female genital mutilation/cutting (FGM/C) in the United States.
Although FGM/C occurs in the U.S. population, the true incidence is difficult to ascertain. Anecdotal evidence for vacation cutting (sending girls abroad to their home countries over summer vacation to undergo the ritual)
Although more than 50% of girls who undergo FGM/C are under the age of 5, the age at which FGM/C occurs varies widely between ethnic groups and countries. For example, in Indonesia, FGM/C is performed in infancy, whereas in Egypt, it occurs between the ages of 10 and 14.
There has been some controversy surrounding the concept of screening for FGM/C. Questions deliberated among experts in the field include the following:
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Should pediatric providers be performing genital exams at all well child checks?
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Does screening based on country of origin constitute racial/ethnic profiling?
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How should a child who is at risk be protected?
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What should happen to a family that has sent their daughter to be cut?
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How can we train providers to recognize FGM/C?
While these issues are debated, girls who are at risk for FGM/C will be presenting to providers in the United States. Knowledge of FGM/C is limited in pediatric providers; a recent study revealed that 89% of those surveyed did not feel confident in their ability to identify FGM/C.
Best practices for history taking, interviews, and physical examination will be offered here.
Interview and History Taking
The provider should have some familiarity with the populations and cultural practices included in their patient body, in addition to some background knowledge of FGM/C and the countries in which it is practiced. When a patient's family is from the central swath of Africa, it is likely that they are, at the very least, aware of the practice of FGM/C. During the interview, FGM/C should be referenced in a nonjudgmental, culturally sensitive way; this requires the interviewer to have examined their own biases regarding FGM/C and to be able to put them aside to engage with the family and elicit truthful information. A sample script is included below:“I see your family comes from XXX country. I am aware that the ritual of FGM/C, or excision, is practiced there. Is that something that has affected you or your daughter?”
The interviewer must pay attention to nonverbal cues of the parent and child. Often, FGM/C is associated with stigma and secrecy, and discussing it is considered taboo. This screening conversation with the physician is often the first time FGM/C has been brought up for discussion in the medical setting, even for women who have given birth. Often, families are not aware of the negative health effects of FGM/C
or the legal ramifications in the United States. Sharing that information can help break the ice. The following is an example:“Many parents are not aware that FGM/C has negative effects on the health of girls, such as pain, menstrual and urinary problems, psychological problems, and more.”
Parents might still be reluctant to admit to adhering to the practice. Establishing rapport and trust with both the patient and the parent/guardian is essential. Another opportunity to assess for risk arises during the physical exam.
Physical Examination
FGM/C is practiced in nonmedical and medical settings, may be performed by an untrained provider, and is frequently performed without anesthesia to a child who is struggling. This contributes to significant variations in the physical outcomes, even within the WHO subtypes. In fact, the presence of FGM/C is often missed in adult women who are examined in the United States and other Western countries.
Type I: Partial or total removal of the clitoral glans (clitoridectomy) and/or the prepuce
Type II: Partial or total removal of the clitoral glans and the labia minora, with or without excision of the labia majora
Type III: Narrowing of the vaginal opening with the creation of a covering seal by cutting and appositioning the labia minora or labia majora with/without excision of the clitoral prepuce and glans majora with/without excision of the clitoris
Type IV: All other harmful procedures to the female genitalia for nonmedical purposes (eg, pricking, piercing, incising, scraping, cauterization)
Fig. 3World Health Organization (WHO) classification of female genital mutilation/cutting (FGM/C).
Types I and II are the most commonly performed and seen in women and girls of the West African diaspora and communities in Gujerat state in India. Type III is common in Egypt, Sudan, Eritrea, and Somalia and carries more severe health consequences, including urethral strictures, fibrosis, fusion, vaginal stenosis, cyst and neuroma formation, and abscess formation. It is less prevalent globally.
In the clinical setting, identifying the type of FGM/C performed is less crucial than identifying the presence of FGM/C. This can be challenging, especially in the pediatric population, where vulvar structures can be underdeveloped (see Fig. 4 for normal anatomy).
Before menarche, the labia minora are relatively prominent, the hymen is thickened, and the epidermal skin is thin, making the vaginal introitus appear bright red in its normal state. Sometimes, labial adhesions are present, which can mimic ambiguous genitalia. Vulvar dermatological conditions that could mimic some of the changes associated with FGM/C include lichen sclerosis, vulvar atopic dermatitis, and vulvar psoriasis.
In most states, health care providers are mandated reporters of suspected child abuse. Laws regarding FGM/C vary from state to state, and in states where no specific anti-FGM/C law exists, a child at risk of undergoing FGM/C could fall under the protection of child abuse laws. Reporting of risk of FGM/C is fraught with social and ethical dilemmas. First, the agencies responsible for investigation and enforcement of child protection laws likely do not have personnel trained or experienced in dealing with this particularly sensitive issue. Insensitive handling could result in deportation and separation of a family that might have tried and failed to prevent FGM/C from occurring. Thus, the issue of prevention can be a daunting one for pediatric care providers. An easy initial step, after assessing the beliefs of the parent(s) regarding FGM/C, is to educate families about the legal repercussions of FGM/C in the United States. A simple question can suffice to start the conversation: “Are you aware that FGM/C is illegal in the United States?”
Because of the current dearth of public health entities and government agencies trained and equipped to deal with FGM/C detection and enforcement, nearly all of the responsibility for prevention efforts lies with the medical providers who encounter affected women. In the setting of equivocal findings on exam, referral to a trained specialist is recommended.
Providers in countries of migration might rarely encounter acute sequelae of FGM/C, such as urinary retention, hemorrhage, hypovolemic shock, and infection. Fractures occur, likely due to being restrained.
A provider caring for a woman with FGM/C must actively enquire about health consequences. Women might not seek care or request care for sequelae of FGM/C, for several reasons. They might not have access to such specialized care, they might not have acknowledged that their health concerns could be attributed to their FGM/C, and they might feel stigmatized and unable to confide in their provider. The long-term consequences include pain, urinary dysfunction, infections, scarring, infertility, sexual dysfunction, and mental health issues.
FGM/C nearly always causes changes in the skin of the vulva after it has healed. Depending on how much tissue was excised, the changes could be as subtle as a loss of architecture of the clitoral hood. Keloids can form, and neuromas, labial fusion, and epidermal inclusion cysts have been described. Condylomata can arise in the scar tissue of the vulva. Dysmenorrhea, dyspareunia, and prolonged menses from obstructed flow occur. Treatment should be in accordance with the severity of the patient's complaint, and surgical management might be required, necessitating thorough knowledge of the anatomy of the clitoris, its innervation, and blood supply.
Medical and surgical treatment can focus on easing discomfort; treating condylomata, neuromas, cysts, and fibrosis; and allowing the patient to reach her sexual goals.
Genital and Urinary Tract Infections
Genital and recurrent urinary tract infections might be more common in women and girls who have undergone FGM/C.
Accurate diagnosis with urinalysis and urine culture is essential to prevent antibiotic-resistant bacterial urinary tract infections (UTIs) due to chronic infections. The distorted anatomy increases susceptibility to UTIs, and deinfibulation might be necessary. Distorted anatomy predisposes to genital bacterial and vaginal infections.
Deinfibulation
In the Somalian and Sudanese cultures, where infibulation is the norm, women might feel a sense of pride about their vulvar appearance. Deinfibulation (the opening up of midline scar tissue obstructing the vaginal introitus and/or urethra) changes their role in their marriage and status in the community. This is one reason deinfibulation must not be undertaken as a matter of course when an infibulated woman presents for care. In obstetric patients, a careful assessment of the size and elasticity of the tissue surrounding the introitus could help a provider make an informed judgement as to whether vaginal birth can occur without significant vulvar or perineal lacerations. Deinfibulation before giving birth may be indicated if the patient's tissue is tense, thin, or rigid with scar to prevent obstruction in the second stage and to prevent a severe laceration. Deinfibulation is also indicated in women with recurrent vaginal or urinary infections, where obstruction of the urethra or vagina leads to bacterial colonization and ascending infection. Infibulated women and girls could encounter pain and difficulty with penetrative sex, which is another indication for deinfibulation. Deinfibulation can be simple or can be challenging and risk damage to the urethra, clitoris, and nerves and vasculature distortion due to overlying scar tissue.
Sexual dysfunction, dissatisfaction, and pain are all common among women who have undergone FGM/C. Sexual concerns may or may not match the anatomical disfiguration presented by the cutting; some women with nearly undetectable anatomical changes might experience significant sexual dysfunction and even re-traumatization during intercourse. Some of this could be attributable to trauma associated with the event and cultural stigma related to expectations of women to be “chaste” and “pure” rather than “lustful.” Once acculturated to Western ideas about feminine sexual enjoyment, women and girls with FGM/C may newly begin to feel themselves dysfunctional.
Basic psychoeducation about the normal sexual response, norms in relationships, and exploration of sexual goals could be enough for some patients. Referral to a sex therapist and/or a psychotherapist is beneficial for some patients.
General Reproductive Health and Infertility
In many cultures where FGM/C is practiced, preventive medicine and routine access to family planning are not the norm. In their countries of origin, medical care is often only sought if there is a significant problem, and it is often expensive. For many women and families in destination countries, their worldview remains reactive and not preventive, and they have difficulty understanding the importance of screening for sexually transmitted infections, HIV, and cervical and breast cancer. Although many do not seek these services, they are willing when education is provided and when the services are accessible to them. Infertility is due to both anatomic and psychological barriers given the anatomic damage and subsequent dyspareunia.
Mental Health
Women with FGM/C were noted to have a higher prevalence of somatization, depression, and anxiety in a cross-sectional study.
Many women with FGM/C express a feeling of loss and a desire to “get it back.” They feel stigmatized and wish to seek reconstruction of the clitoris and surrounding tissue to feel complete again. Comparative MRI studies demonstrate that only a small portion of the glans clitoris is removed during FGM/C, and a significant amount remains underneath the scar tissue.
Several techniques have been described to re-expose the clitoris by excising the overlying scar tissue, releasing the suspensory ligament of the clitoris, and reconstructing the clitoral hood and labia minora.
Literature regarding outcomes is scant and varies in quality, with only some case series reporting an improvement in sexual function and a significant rate of hospitalization with complications. In the United States, several surgeons and referral centers have developed the expertise to perform this procedure. In Belgium, a multidisciplinary center has been developed to provide this service for women who desire it, including sexologists, psychotherapists, gynecologists, and community health workers, who provide a network of care around the patient so that she can meet her goals. Even with this comprehensive infrastructure, significant complications can arise.
FGM/C has been declared a human rights violation, and the United Nations and over 100 countries have committed to work toward eradication of the practice. It does remain legal in many countries. In the United States, although it is illegal to perform FGM/C on a minor or cause it to be performed by assisting in vacation cutting (the rite of sending a girl back to the family's country of origin to be excised), it has not yet been prosecuted at the federal level and only a handful of times at the state level. Currently, 40 states have FGM-specific legislation of varying degrees of comprehensiveness. Recently, a case of a Michigan doctor who was accused of performing FGM/C illicitly was tried. The Detroit judge's ruling on the case was that prosecution of FGM/C is outside the jurisdiction of the federal law, causing debate over the constitutionality of the U.S. federal laws banning FGM/C. The case continues in civil court.
Nonetheless, accusation of violation of the federal law can cause significant emotional, social, and financial difficulties for a family, including prison time or deportation if convicted. This can be an important piece of education during discussions with families about their intentions to preserve this particular custom.
Community Engagement
Immigrants tend to form communities in destination countries from within their countries of origin so that they can share and preserve language, cultural and religious traditions, and food customs. In communities from countries where FGM/C is practiced, it is often considered taboo to discuss this rite. Women's attitudes have been seen to change with migration, and by engagement with the community, the discussion of potential harms caused by FGM/C can be raised out of the realm of furtive whispers and into the public discourse. This engagement and discourse can help with the prevention of FGM/C for the girls within that community. For medical providers to engage in treatment and prevention of FGM/C, they will need to form a trusting relationship with local communities. This can be achieved with relatively little effort by asking a few motivated patients to be advocates or hosting a group event where the subject of women's health is the focus and FGM/C is presented as an important component.
Although FGM/C is an international issue for women's health, it is increasingly being encountered in the United States as more immigrants from Africa, the Middle East, and Indonesia bring the custom of FGM/C with them. Background knowledge can help providers feel more comfortable with initiating conversations about FGM/C and heighten their awareness so that screening and prevention strategies can be employed
Pediatric and adolescent care providers, after becoming familiar with the risk factors for FGM/C, can counsel in a culturally sensitive manner against this practice, emphasizing that it is against the law. They can attain a level of comfort with history taking and incorporate an inspection of the external genitalia during the physical exam. In cases of equivocal findings, referral to a trained specialist can be initiated, including the need for deinfibulation for type III FGM/C.
Lightfoot-Klein H: Prisoners of Ritual: Some Contemporary Developments in the History of Female Genital Mutilation. Worcester, MA, Female Genital Cutting Education and Networking Project, 1991
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