By Dr. Arefa Cassoobhoy and Dr. Stacia Crochet

While research indicates that there are over 500,000 women and girls in the United States who may have experienced or be at risk for female genital cutting (FGC), the reality is that many physicians, nurses, and other health care workers in the US may not know much about FGC. That makes it difficult for persons seeking medical treatment to find a physician who can help survivors. Additionally, there’s a prevailing attitude that very few physicians are trained to appropriately treat the problems that can result from FGC, making the search for doctors that can care for survivors even more challenging.

If you’re someone who’s experienced FGC and you have questions, who do you go to? 

If you need medical or surgical treatment, who is qualified to treat you? 

To answer these questions, I, Arefa Cassoobhoy, MD am interviewing Stacia Crochet, MD, a gynecologist at the Emory Clinic at Emory University who has treated people with medical complications from FGC. 

Q. Dr. Crochet, If someone has experienced FGC and has questions or concerns, who should they start with for an initial evaluation? 

Answer: A person who has experienced FGC can start with a general gynecologist (OB/GYN). 

The gynecologist can:  

• listen to the symptoms one may be having like pain with sex, inability to have vaginal intercourse, or vaginal discharge 
• Review the individual’s medical history like having a history of recurrent UTI’s
• Perform a pelvic exam

Q. What kind of treatment may people who have experienced FGC need?  

• Answer: It depends on what their symptoms and goals are! From a medical perspective, they may not need anything special beyond a routine well-person exam. While an OB/GYN is not an expert at addressing the emotional and psychological aspects of FGC, we understand the need to take personal experience and feelings into account when performing an exam on someone. For instance, if the person is not comfortable with a speculum or internal exam, we can modify the exam and use either a swab or a very small speculum or initially do an external exam and talk about how to get to a point where an internal exam is possible. 

• A person who is experiencing vaginal discharge may need swabs to identify an infection and treatment if appropriate. We would also discuss ways to maintain the normal vaginal environment to help prevent recurrent infections. If the FGC is contributing to the infections, then we would discuss that as well. 

• Finally, persons seeking a correction of the FGC may only need a simple procedure to separate the labia in order to open the vagina. They may also be a candidate for more extensive reconstructive surgery. In these more extensive cases, doctors can remove scarring from the clitoral area and reconstruct the labia minora. The goal here would be to restore the normal anatomy and function of the labia (vaginal lips), vagina, and the clitoris (the nerve center which helps with sexual pleasure).

Q. Who may a gynecologist refer a person to for further treatment? 

Answer: 

• Gynecologists can also make referrals to mental health providers if a person needs it, as sometimes physical and psychological therapy work best together.

• In other instances, a person who is experiencing pain with sex or pelvic muscle issues like incontinence or vaginal bulging/pressure, may  receive a referral to pelvic floor physical therapy. Pelvic floor physical therapists help people learn to control their pelvic floor muscles in order to improve these types of issues. Treatment often involves an exam and pelvic muscle massage, relaxation techniques, or strengthening exercises depending on what the issue is. 

• If there’s a surgical treatment that the gynecologist cannot do, they can refer a person to a urogynecologist (also known as a female pelvic medicine and reconstructive surgeon) who is fellowship trained in reconstructive pelvic surgery.

Q. What surgical treatments  need a referral to a urogynecologist and reconstructive pelvic surgeon?  

Answer: These specialists can perform the following surgical treatments for FGC and provide other methods of pain management if needed. 

• Defibulation
  • This procedure involves creating an opening where the labia are fused. The goal is separation of the labia to expose the vaginal opening. 
• Clitoral reconstruction
  • This generally involves removing scar tissue that may be covering the clitoris and recreating the clitoral hood. This is generally done for clitoral phimosis, which occurs when the clitoral hood (prepuce) becomes adhered to the glans clitoris, making it difficult or impossible to retract. Many times, reconstruction can relieve chronic pain caused by the phimosis and can help to improve pleasure during clitoral stimulation. 
• Labial reconstruction
  • This type of reconstruction involves recreating the labia minora (inner lips) to restore the normal anatomy of the vagina and the vulva.  
• Trigger shot injections
  • These are generally injections into areas that are particularly painful and have been resistant to other methods of treatment, such as pelvic floor physical therapy, or for individuals for whom surgery is not appropriate.

Q. Where can survivors find a urogynecologist and reconstructive pelvic surgeon?

Answer: 

• A general gynecologist should be able to refer a person to this specialist. I would recommend academic centers that are more likely to have experience with supporting individuals with FGC, especially in large, diverse communities such as Atlanta, New York City, or Washington, DC. Most urogynecologists, however, should be able to offer a surgical solution if it is warranted. So, if an individual seeking care lives in a more rural area, they shouldn’t hesitate to talk to a local gynecologist. If the gynecologist is not comfortable performing surgery, they can always help find someone who is qualified to do so. 
• A quick Google search for urogynecologists in the area is also reasonable; however, having a gynecologist the person already knows, who can refer them to someone they trust, may help them get where they need to go more quickly! 

Q. Will medical insurance pay for treatment? 

Answer :

• Getting treatment for pain with sex (dyspareunia) or pelvic pain, for example, are medical conditions that insurance can be billed for. Insurance also covers other complications from undergoing FGC, like recurrent UTI and vaginal discharge. In general, insurance will cover care related to FGC. 

Q. What other advice do you have? 

Answer:

• Remember that we are here to help you! Don’t hesitate to ask questions and to speak up if you are uncomfortable. I know it can be difficult to seek care for a condition that can seem foreign in this area of the world, but I assure you that there are many providers out there who have experience in FGC, even if it isn’t advertised. Sometimes the first step doesn’t even involve an invasive exam. It can start with a conversation!

If you have more questions or need more information, please contact us at info@sahiyo.org.