Under the Radar: Female Genital Mutilation in the United States

This transcript has been edited for clarity.

Female Genital Mutilation: AKA 'Cutting'

Arefa Cassoobhoy, MD, MPH: I'm Dr Arefa Cassoobhoy. Today we're talking about a topic that's not well known but needs to be: female genital cutting, or female genital mutilation. It's often called FGM/C. Its prevalence in the United States is significant. An estimated half million women and girls are affected by or at risk for FGC in the United States right now.^[1] It's a practice that, unfortunately, is still happening. You may have heard of the case involving female genital cutting of nine young girls in Michigan. Today I have Dr Ranit Mishori from Georgetown and Dr Deborah Ottenheimer from Cornell, here to get us up to speed on this topic. They are co-leaders of a national network of clinicians and researchers who work with women affected by FGM/C. Our goal is to provide you with recommendations for clinical care of patients who are affected by FGM/C.

I'll start with a basic question. What is female genital cutting?

Deborah L. Ottenheimer, MD: The World Health Organization has defined it as any procedure involving the cutting or alteration of female genitalia for nonmedical reasons. There are four broad categories. Type 1 involves the cutting of the clitoris or the clitoral hood or both. Type 2 (excision) is type one plus the removal of the labia majora or minora. Type 3 (infibulation) is the closure of the external genitalia to obscure and reduce the size of the vaginal orifice; it also involves covering the urethra and leaves a very tiny opening for the egress of menses and urine, and for intercourse. Type 4 is everything else, including khatna (which is what was involved in the case in Michigan—a nicking of the clitoral hood), introduction of caustic substances, piercing, and any other traditional practices that might not fall into those first three categories (Figure 1).

Figure 1. Classification of FGM, types 1-3.

FGC in the United States: Yes, It's Happening

Cassoobhoy: Who are these women and girls who are affected by FGM/C? Where are they found in the United States?

Ranit Mishori, MD, MHS: Globally, people tend to think that FGM/C is only an African practice. But in fact, it's practiced in many other places. It's practiced in Southeast Asia, parts of the Middle East, and Colombia. In the United States, it is mostly women who came from these other places to settle here as refugees or immigrants. But it seems that it's practiced in some US communities. That, of course, is very much happening underground because it's illegal in the United States, and in many other countries, to perform these practices. But clearly, especially after the Michigan case, it's being done by local practitioners in the United States (Figure 2).

Figure 2. Three-fifths of all women and girls who have undergone or are at risk for FGM/C live in these eight states.^[2]

Ottenheimer: Also, it's really important for Americans to own our own history in this. Physicians were practicing clitorectomies until 1977 in America. It was ostensibly a treatment for hypersexuality or lesbianism or masturbation.

Asking the Right Questions in the Right Way

Cassoobhoy: When it comes to caring for these patients from a high-risk group, should we be asking about FGM/C, and what do you tell clinicians on the frontline? I know both of you are training physicians in the emergency room, the primary care clinic, and the OB/GYN clinic. What should they know?

Mishori: In my opinion, we need to screen for it, but there are no validated screening tools at the moment. There are some efforts around the country and around the world to create those. But ideally, you want to prepare. You want to know. If you're going to do a Pap smear or deliver a baby, you need to know what to expect.

Ottenheimer: I tell my residents and medical students that you have to look, especially when you're in training. You're so worried about getting that Pap smear right and the mechanics of that, that you forget to actually look at the external genitalia. If someone has type 1 FGM/C, which is removal of the clitoris, or even type 2, if you're not looking, you're going to miss it, especially if it's someone who's had children in the past—which is a missed opportunity not only to ask the questions about complications that the woman may be having, but also what she may be planning for her own daughters.

Mishori: Also, when you look, you need to know what you're looking for. There have been studies in the past with women who have been affected by FGM/C, in the United States, who complained that physicians' reactions to what they were seeing were pretty awful and demeaning.

Cassoobhoy: If you're taking care of a woman with FGM/C and you notice this on exam, what are the exact words you should use? How do you speak with empathy and without passing judgment?

Mishori: Ideally, you would know about it before you actually set out to do a pelvic exam. What I say usually is, "You come from a country where this is a cultural norm. I have other patients from your region (or your ethnic group), and many of them are cut. Do you know anyone who has been cut? Has your mother been cut?" And then I say, "Have you been cut?" And if she says yes, I say, "Is this the term that you want to use—cut or circumcise? What term is appropriate for you?"

And then I ask, "Do you have any issues with that or are there any consequences, physical or emotional?" before I actually evaluate the physical aspects of it.

The Patient's Perspective on FGM/C

Cassoobhoy: What medical and psychiatric concerns should we know about that these women may reveal to us?

Ottenheimer: It's important to remember that not all feel badly about it. Not all have complications. And those who do have complications have them in a way that's not proportional to the amount of physical damage that was created. A lot of people want to say that if you have type 1, you won't have too many issues; if type 2, a little more; and type 3 is really bad. That's not true. You have to meet patients where they are, ask all of the questions of everyone, and not assume that the person in front of you feels that it's a bad thing. You really have to separate your advocacy hat from your clinical hat.

Mishori: The biggest learning point for me in working with women affected by FGM/C was that many of them are proud of it. As a Western-trained physician, I always thought of this as a terrible human rights violation. Why would anybody want to have FGM/C done or think it's a good thing? But some women are completely happy, and it's part of their culture. I'm not condoning it by any means, but we need to understand that you can't bring your negative, judgmental, Western-based attitudes when you see patients from some of these communities. As clinicians, we tend to focus on the physical issues, such as scarring or chronic pain, but we sometimes neglect the mental health issues associated with FGM/C, and we don't often ask about sexual dysfunction because, in general, we don't do a good job asking about sex. It's important to ask about those concerns.

Ottenheimer: It's hard for many affected women to talk about it. There's a lot of secrecy about the practice—they haven't spoken to their mothers, sisters, or grandmothers about the problems they may be having.

Mishori: Or they may come from communities where it's taboo to speak about sexual function and sexual pleasure. There's a lot of stigma surrounding discussions of sexuality, but it's important to bring it up, because often the most painful and troubling aspect is the emotional element and how it affects relationships.

The Challenges of Referrals for Specialty Care

Cassoobhoy: When you're taking care of a woman who's undergone FGM/C, under what circumstances would you consider referring them out? I'm thinking of the whole spectrum—medical, surgical, psychiatric, and even social concerns.

Ottenheimer: Sometimes I'll refer women for pelvic floor physical therapy. But for the most part, I can take care of it myself. A psychiatric referral is certainly worth approaching, but it's not often an acceptable idea. You have to work towards the idea that a mental health intervention might be helpful. You also need to think about including the partner, if there's a male partner involved, and the issues are sexual in nature.

Mishori: The other thing is, who do you refer to? Which of our colleagues even know about it? I can't tell you how many times I was referring to a urologist, for example, and they didn't know what I was talking about. How can they even start to help if they're not trained? And this also is true for mental health and behavioral health clinicians.

The key is a multidisciplinary effort, because sometimes you need to involve urology, dermatology, plastic surgery, specialists in sexual health and pelvic floor, physiotherapists, mental health providers, and gynecologic surgeons. And even pediatricians and emergency room physicians, because that might be where FGM/C is seen, but they don't know to even look for it. I never imagined that I would have to train emergency room physicians in the United States to identify FGM because I never imagined that it actually was happening in the United States.

Can FGC Be Reversed?

Cassoobhoy: One thing that has come up in the news around FGM/C has been the reversal surgery. Can you tell us a little bit about that?

Ottenheimer: There are two things that you could call reversal surgery that get conflated a little bit. One is defibulation. In a woman who has been infibulated (everything is closed over) and going to deliver a baby or is having painful intercourse, you can open that midline closure. That is considered recommended practice. Another surgery, which is still considered experimental, is clitoral reconstruction or the re-exposure of the clitoris to the outside. There is a lot of work and a lot of talk about it.

Something that is really important to realize is that the clitoris is actually quite big. In medical school, we learned that it's a little button that's on the outside. But there's actually quite a large organ underneath that surrounds the anterior vagina. So, a lot of sexual pleasure can be had, particularly with a cooperative partner. That's another reason why you need to involve partners. The re-exposure involves opening the scar tissue overlying the remaining clitoris, freeing it up from the dorsal ligament and bringing it forward. Then a purse-string suture keeps it forward. At first, the area is pretty raw, but it does re-epithelialize.

The results are varied, but the reasons for pursuing the surgery also are varied. Sometimes it's not about sexual pleasure but about regaining what you feel was taken from you. It's a little unclear at the moment what the complication rates are. There haven't been any good studies of sexual function pre- and post-surgery.

Educating Clinicians Is a Must

Cassoobhoy: Are there any last points that you want to make?

Mishori: It's very important for providers to educate themselves; read up about it. No US evidence-based guidelines have been published, but the World Health Organization has a very good clinical handbook on FGM/C.

Often there are no other clinicians in your area who know what it's about and how to handle some of the complications, and sometimes providers wonder whether they should even ask about FGM/C if they don't know how to handle it. But that's about education. It's a self-perpetuating goal to educate yourself and your colleagues.

Ottenheimer: That's one of the reasons why we have an online group, US Clinician Network on FGM/C, so that providers have resources and can ask questions.

Mishori: And there are training opportunities: webinars and conferences around the country, primarily in OB/GYN, midwifery, family medicine, and pediatrics.

Cassoobhoy: Thank you both for joining us. And thank you all for watching us today. Please send us your questions, comments, and resources about FGM/C, and please share this video with your colleagues.

Web Resources

US Clinician Network on FGM/C

World Health Organization: Care of Girls and Women Living With Female Genital Mutilation

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Cite this: Under the Radar: Female Genital Mutilation in the United States - Medscape - Mar 06, 2019.