Hi, everybody. It's so nice to see everyone. Thank you so much for coming and I'm sorry for any delays there and getting started. I'm Jules Guinness-Montan. I'm from Northwestern Medicine or Northwestern University, and I'm really excited to talk with you today. Thank you all for joining at a late hour to talk about this really difficult topic. And as maybe Tashi or Dr. Stewart told you, we're going to advance the slides verbally through here just because I'm having some technical difficulties. So you'll hear me say next slide a lot. Go ahead and advance. Next slide. Lauren, do you want to do the housekeeping items? Oh, sure. Yeah. Oh, sure. Sorry. I can step in now. Dr. Guinness-Montan, we had a little introduction planned for you, but I know you just sort of introduced yourself. So I'll just, I'll, so I'm sorry that you had to do that. We normally would have given you a nice little introduction, but you did it for no reason. So just a couple of housekeeping items. I'm Lauren Stewart. I'm going to be the moderator for today's webinar. The presentation will run about 45 minutes and the last 15 we've reserved for question and answer. AUGS designates this live activity for a maximum of one AMA PRA credits. To claim your CME credit, you have to log on through the AUGS e-learning portal and complete the evaluation after the completion of the webinar. This webinar is being recorded and live streamed and a recording of it will be made available in the AUGS e-learning portal if you want to go back and reference it at a later date. Please use the Q&A feature, not the chat feature in the Zoom webinar to ask any questions that you might have and we'll address them or answer them at the end of the webinar. And you can use the chat feature if you have any technical issues, that's going to be being monitored by AUGS staff who are excellent and can help you with any issues you're having. Dr. Guinness-Montan, you can take it away. Thank you so much. So I guess I wanted to get started on this topic just by giving you a couple of disclosures about what this talk is and isn't and kind of where I'm coming from in it. The first is that most of the scientific literature that I'm going to show you and really most of what's been published on FGMC or female genital mutilation comes from a Western perspective, which might draw on some assumptions about the power of women, the importance of sexuality, the agency of immigrants and things of that nature. And so, of course, the things that I'm able to read in English and present to you may have some of that bias. The other is that as an OBGYN, I've performed many male circumcisions and then, you know, as a Jewish mother, just sort of as a personal aside, I've chosen to take part in my culture's ritual. But obviously, I feel that male circumcision and female circumcision are different, but I can understand and acknowledge why others might not agree. And so I just want to sort of make that clear from the beginning. And then importantly, this talk is not going to cover labiaplasties or peroneoraphies or hymenectomies, which in many cases actually would fall under the WHO's definitions of FGM, but are not regulated in that way in the U.S. And so just a little bit about why it is that I'm giving this talk. I serve as a asylum evaluator for the Physicians for Human Rights, which is something that I underwent training for as part of the Weill Cornell Center for Human Rights. And essentially, I serve as a referral source for any lawyers and advocates that are trying to help patients who have survived female genital mutilation or circumcision get asylum status here in the United States. And so as an asylum evaluator, I've really sort of taken it upon myself to do a lot of research and, you know, and I've talked with many, many patients on this subject, which is really the basis of a lot of what you'll hear in this talk. Next slide. So we have a couple of objectives for today. I would like for you to be familiar with the types of FGM as defined by the WHO, to understand how to identify FGM, how to ask about it, how to document it with your patients, and then to understand the clinical implications of FGM. We're going to spend a little time talking about the surgical corrections that have been developed and where to refer patients for this, and then a little bit about the legal framework and our obligations as mandatory reporters. Next slide. So the WHO's definition of FGM, which was first codified in 1997 and has been recodified and reauthorized basically every five years since, is that female genital mutilation or circumcision comprises all procedures that involve partial or total removal of the external female genitalia or injury to the female genital organs for any non-medical reasons, and of course non-medical being the most important part of that definition. Next slide. So I certainly, and I think many of us who do this work, really see female genital mutilation as one part in a much larger cycle of violence against women. And really that can start from pre-birth and sex-selective abortions, transfers through infancy with female infanticide, in childhood we see it as FGM malnutrition and child abuse, and then in the adult years, I think what we are probably most familiar with, many of us I think being OBGYN trained, is in domestic violence, intimate partner violence, prostitution, trafficking, et cetera. But really this is just one of many ways in which the bodies of women are used or abused in many parts of the world as a form of power and control. Next slide. So one of the sustainable development goals that was initially written out in 2015 when the UN met in New York, one of the goals under the health component was to eradicate FGM by 2030. And all of the member states that are part of the UN really came together to say that there's never a case in which it is okay to not take care of or protect a child's body, and that this really should be a practice that is abandoned. And they created a pathway by which they thought that we would eliminate this by 2030. The reality is that we are nowhere near being on that path, and there is no way that this will happen in the next six years. Next slide. As part of that pathway, one of the things that was really common over the last 10 years are ads like this that were placed really on billboards and health clinics and schools all over the areas in which FGM is commonly practiced. A lot of them had things along this line of, you know, not everything we inherit is a gift to be passed on, right, that the traditions that we come from don't have to be traditions of our future. And, you know, this was done with a number of advocacy groups in the countries in which this is practiced, and there was a lot of marketing and a lot of education, a lot of funding that went towards this. But in reality, we have not seen that this has led to sustained declines in a lot of the countries. Next slide. There have also been legal bans in many places, and I highlight here the countries in Africa where there are legal bans, not because this is the only place it's practiced, but just predominantly this is where we see a lot of cases and where there's been a lot of legislation around this. You'll see in the coming slides when we look at the prevalence across different countries, that some of the ones here that I highlighted in bold, while they have legal bans, they are clearly not being enforced because these countries also have some of the highest rates of FGM. Next slide. Next slide. So in 2024, sadly, and despite the SDG goals, we had an update from UNICEF that reported that 230 million women and girls worldwide have undergone FGM, and that that is, in fact, a 15% increase compared to the data we had from eight years ago. A lot of this has to do with population growth in general in many of the countries in which it's practiced. So while the absolute rates might be decreasing, or sorry, while the relative rates might be decreasing, the absolute number of people who are being cut is actually going up. Next slide. When we look at where this is happening, the countries highlighted in red, this is data from UNICEF, are the ones where it's most prevalent in Africa, and then the blue color is the least prevalent. And then you can see that in the Middle East, there are some countries in which it is least prevalent, but much of the Middle East is kind of in this gray zone of around 20 to 40%. And then, you know, we don't have it on this picture, but we have similar maps in North America, in Europe, and in Asia, and particularly South and Southeast Asia, kind of looking at where prevalence is there. The countries marked in red and where I have the name of the country listed there are where the rates typically are above 80%. Next slide. UNICEF has published data on where they've made the largest progress in reducing rates. And, you know, you can see sort of on the left-hand column there that the countries really that have had the most improvement in red there is Burkina Faso, where, you know, rates 30 years ago were over 80%, and now are below 40%. Countries like Sierra Leone, where we see sort of similar trends. But then over on the right, you see countries like Mali and Somalia, where there's really been no progress over the last 30 years. Next slide. So, just to put it in very clear numbers, you know, we know that in Africa, in Sudan and in Egypt, we see rates around 87%, in some communities closer to 95%. Versus, you know, in other places in Africa, they're very low rates. You know, in Niger, for example, it's 2% or even less. And so I think that there's this myth out there that it happens, quote unquote, in Africa as if it's some monolithic thing, when in reality, they're very, very different community, tribal, kind of ethnic practices. Importantly, these are not religious practices, and there is no religious group that actually condones FGM. But there are ethnic and kind of tribal and community-based practices that support this. In West Africa, where we see this primarily in Mali, usually it is Type 1 and Type 2 FGM that we see, and I'll show you what those look like. In East Africa, it's primarily Type 3. There are lots of other places in the world in which this is occurring. I don't mean to point out that this is, you know, predominantly in Africa. We know that nearly half of girls under 12 in Indonesia have undergone FGM, that this is happening in the Bora community in India, in the Kurdish community in Iraq, and in Yemen. And so there's a couple of references there if you're interested in kind of where we're getting some of this population data. Most of it comes from the UNFPA, but, you know, we see it in a number of smaller publications, actually, from local OBGYNs and surgeons in those communities. Next slide. So how do we explain FGM, or what are the sort of traditional explanations for it? Most importantly, it is tradition, right? It's culture, it's tradition in local communities, which then translates into a person's marriage ability, beliefs about their chastity or their morality. There are social acceptance kind of factors around this that, you know, you'll see in interviews that have been published on this with women in the communities. They say, you know, I would not be able to go to the market, I can't be selling my goods, I can't, you know, go to the local bath or get into the river or the lake or whatever if I haven't undergone this procedure. Some of it is supposedly grounded in hygiene, although there's never been any data to support that. There used to be at the beginning of the HIV epidemic some claims that perhaps this would reduce the rates of HIV, although we think that it's possible that if anything it might actually spread HIV through the cutting of girls using the same tools. And most importantly, we know that FGM yields no health benefits, and so the explanations are purely kind of cultural rather than medical. Next slide. So these are some of the typical kind of quotes that come out from interviews. This slide happens to be from a educational presentation that was done in one of the countries in which the UNFPA and UNICEF together had kind of put out this big, you know, push to suppress FGM, and they were hosting a number of educational sessions with local communities and they used the slide to kind of get people talking. And you can see some of the quotes that are common in that community. Things like, you know, we cut because we've always been cutting, it's what we do. If a girl is not cut when she gives birth, nobody can attend to her birth because she's considered unclean, and so therefore, you know, the risk of maternal morbidity and mortality increases. And so these are the kinds of conversations that are, you know, passed from generation to generation. Next slide. Okay, next slide. So let's talk a little bit about terminology and what it is, you know, I've sort of hinted at the different types of terminology. So FGM is classified into four types, the first type being clitoroidectomy, right? So anything that involves removal of the clitoris alone, whether that's partial or total, and that can be just the exposed portion of the clitoris or deeper, you know, sort of behind the clitoral hood and closer to the pubic symphysis. Type two is excision, and typically we talk about this as excision of the labia minora together with the clitoris or sometimes without the clitoris, but it has to be at least excision of the labia minora. And then infibulation, or type three, is narrowing of the vaginal opening through incision and resuturing, and this can be with or without removal of the clitoris. And then type four is basically anything else. This can be pricking, piercing, scraping, cauterizing, et cetera. Next slide. These are the typical tools that, you know, have been used for many generations to perform this. I will say that in many of these countries, there's been a push towards medicalization of the procedure, and so, you know, it is done in health centers and perhaps in more sterile conditions and using, you know, more modern tools, but in many places, it's done very much in this way. Next up. So I think that these diagrams are really helpful. They come from a great paper by Dr. Abdul-Qadir, who is kind of one of the most prolific academics on this subject, and I think these are actually really nice to have to be able to show patients if they're trying to understand what may or may not have been removed and what kind of typical anatomy looks like. And so what you see here are different forms of FGM, and the pink parts are what has been removed and what has been removed. So what you see here are different forms of FGM, and the pink parts are what has been removed and the kind of definitions of each type. So here is FGM type 1 with removal of either just the clitoral hood or the clitoral hood and the exposed part of the clitoris underneath. Next slide. And this is a diagram from one of Dr. Abdul-Qadir's publications, kind of looking at what this would look like in real life. And so you can kind of see that fibrosis and, you know, closure over the clitoral hood. Next slide. This is FGM type 2, which you can see there's variations on this which involve either excision of the labia minora, the excision of the labia minora with clitoridectomy, or all of that plus excision of the labia majora. And you can see examples of what that looks like on the right in vivo. OK, next slide. And then this is FGM type 3, which typically is removal of all of those other organs and also closure of the androidus. Next slide. And this is what that looks like. There are, of course, varying degrees of closure, and some of them might still allow for some penetrative intercourse, others do not. Some, you know, have basically a pinhole that allows for menstruation and urination. Others, you know, depending on how they scar, have multiple pinholes, which actually creates really a lot of pain and a lot of urinary dribbling, dribbling of menses, things of that nature. Next slide. And then in some cultures, and this is of course not consistent throughout, but there's usually this ritual scarification that happens after FGM. And it really serves sort of as an external sign that FGM has occurred. And also if not a lot is removed, if many people in that community undergo type 1 FGM and it may be hard later to determine whether it occurred or not, this scarification acts sort of as a validity check that in fact, this individual was cut. Next slide. And next again. So a couple of years ago, the UNICEF basically put together the systematic review as they were trying to really put forth this effort to suppress FGM. They created a lot of education around both the short and long-term physical and psychological sequelae of the procedure. And many of them are listed here and they're the things that probably are obvious to many of us, but of course, hemorrhage at the time of the procedure, pain immediately during the procedure, hemorrhagic shock or neurogenic or septic shock, swelling of the genitalia, infections, urinary problems, very acute urinary retention, particularly in type 3 FGM, the legs are bound usually for 10 to 14 days afterwards to actually allow scarring of that infibulation. And so in most cases, there's no Foley catheter available. And so these girls are urinating over that open wound and develop acute urinary retention. There have been many reported cases of death, usually due to sepsis or hemorrhagic shock. Next slide. In the long-term, there are, of course, other physical sequelae. A lot of them have to do with either recurrent infections, recurring pain, or dysmenorrhea or sort of difficulty with sexual function. You can see sort of a list of them there. Next slide. We also know that there are obstetric complications. Some of those have to do with the infibulation cases where of course there's a lot of scarring, which leads to need for episiotomy for, you know, there frequently are more severe tears and not just in oasis type tears, but actually tears up towards the clitoris, towards the urethra, which can lead to really complex repairs. There can often be labor dystocia leading to cesarean section and instrumented delivery. Next slide. And then of course there are disorders of sexual function for the rest of these women's lives. It's not surprising that they may experience dyspareunia, decreased sexual satisfaction, reduced frequency of orgasm or complete anorgasmia. And, you know, we know that this is much higher in women who have been infibulated or have type 3 FGM, but can very often happen in those with type 1 and 2 as well. Next slide. One of the things that was not very well documented in the UNICEF publication, but is obviously of special interest to me and probably to many of you, are lower urinary tract symptoms in women who've undergone FGM. And so this is just one very small sample of women who I spoke to between the ages of 24 and 40. The majority of them were maliborous and actually all of them were at least two years out from their last delivery. So, you know, while we know of course that LUTs is very common in Paris women and in postpartum women, most of these were not. 73% of them reported the presence of LUTs and you can see the 27% had a urinary frequency, 60% had nocturia and, you know, a large number of them had bothersome voiding symptoms of hesitancy and strained urine flow and intermittent urine stream. And the majority of them had some urgency incontinence despite all being premenopausal. So I do think that there's probably some association, whether that has to do with pelvic floor dysfunction or something, you know, unique to the trauma from FGM that predisposes these women to LUTs. Next slide. And of course, if, you know, if the physical sequelae were not enough, there are of course psychological sequelae to all of this. And these are some of the things that have been described, you know, especially, you know, in large focus groups with survivors, you know, here in the United States. A lot of them report kind of immediately feelings of betrayal, social isolation, or mistrust of their family or community who, you know, brought them to be cut. And in the long-term, a lot of sexual dysfunction, PTSD, anxiety, particularly when they, you know, start to have intercourse or they're thinking about their reproductive options. And then for those who have daughters, fear for their daughters and kind of the trauma that that reignites within their own memories. Next slide. All of that being said, I think it's important that if you're seeing patients who have undergone FGM to not assume the patient experience, you know, the physical sequelae don't necessarily correlate with psychological sequelae. And I've actually had a number of patients fall into all of these different categories of patient perspectives. And so some of them do, you know, report excruciating experiences, right? Traumatic experiences. Others say, you know, yes, it was painful, but necessary, some form of a cultural rite of passage that provided them with status. Others don't remember it at all and don't think about it and don't care about it. And there are many, really many, who feel really proudly about it. They feel that it's strong, that it's enhanced their, you know, relationships, their status in their community, and who feel it's an important rite of passage for them. Next slide. So I think it's really important to know also that the impact on the individual really varies widely and is not linearly related to the degree of FGM. Some of the most challenging cases in terms of medical complications and psychological complications I've seen have been with type 1 FGM. And not all women suffer any or all of the things that I just showed you in those slides, but many do have at least one, if not more of those physical or psychological complications. Next slide. I think it's also important to note that the impact varies based on context. And this is where the, you know, the language and the context of the literature on this really matters. We know that the psychosexual complaints that we see in the literature really is much higher in low prevalence FGM countries compared to high prevalence. And, you know, what that speaks to is that in places where this is normalized and where it's very common, there are fewer psychosexual complaints. People feel that they have kind of the same quality of life as the women around them versus in places that have low prevalence. I think there are places also in the world where people are more enabled to speak out about their psychosexual effects or the medical complications of this than others. And then perhaps exposure to educational material about the negative effects of FGM actually alters women's sexual function, right? That the more that they're told that this has somehow damaged their bodies and that they shouldn't do this to their daughters might actually have an impact on their own self-esteem or their, you know, relationships and sexual function. Next slide. I think that particularly when we look at the data here in the United States and we think about whether or not FGM is related to things like obstetric complications or gynecologic complications, it's important to recognize that many of the survivors of FGM we see in the US are also black women and that there is a racial component to this that obviously overlaps in terms of, you know, poor health outcomes and medical discrimination. And so I think it's hard to say whether, you know, if somebody has, you know, postpartum hemorrhage or, you know, a cesarean section or worse tearing or, you know, poor neonatal outcomes, et cetera, or if they have, you know, recurring gynecologic infections or lack of care for their urinary tract symptoms, how much of that really is due to their FGM and how much of it is due to racial bias in medicine. And I think this one study actually kind of describes this well. This is a cross-sectional study of two waves of Somali women living in the United States. You can see there's really high numbers in this study in these two groups. And the socioeconomic or sociodemographics, FGM status, perceived psychological distress and FGM related health morbidity was examined against their report experiences of everyday discrimination. And what the authors conclude really in the study is that while FGM is associated with physical and psychological health morbidity in the literature, it was not significantly associated with health outcomes when you control for discrimination. And that actually with social support and the support of the FGM community actually provided a protective role for a lot of these women. Next slide. Okay, so shifting gears a little bit about documenting FGM if it's something that you're seeing in a patient. The first and most important thing is to talk about it without judgment and to mirror your patient's language, right? So we might talk about FGM and being mutilation, but that is not a neutral word, of course. And some women might find that term offensive or difficult to hear. And so you can mirror your patient's language if they're talking about cutting, if they're talking about a procedure, a ritual, whatever, those are the words that you should use. I think female circumcision also might be controversial. It's somehow, it means that this is equivalent to male circumcision. And I think that it's quite different in terms of sexual side effects, physical health side effects and agency. And so some of the ways that I have talked to patients about this in the past is around the world, some communities practice female circumcision or cutting. Does this happen in your community? Have you been cut or circumcised or closed? And so some of this language is here for you guys to use if it's helpful. Next slide. Oh, sorry, go back one. The other thing is to make sure that you're documenting FGM as part of your physical exam. Oftentimes patients here at some point in their life might be looking for asylum based on their exam findings and they will have to undergo another forensic exam if it's not documented in their gynecologic notes. You can say things like what I've written there in purple, right, scarring over the clitoral hood, absence of the labia minora, consistent with known FGM experience or absence of the glands clitoris, replacement with epithelial scar. I would not necessarily document this as an ICD code unless you actually talked about the condition and the symptoms and the plan, because for a lot of patients, this is something that is traumatizing that they don't necessarily wanna talk to other providers about. And I think that unless they really want you to document this, I would not expose that necessarily to other people in the health system. Next slide. Next. So in terms of surgical treatment, the one that probably all of you should be familiar with and might at some point be called upon to do if your colleagues in obstetrics need you for it is defibrillation. And this is recommended in type three cases to prevent infections and dysmenorrhea. It's recommended to perform it as early as possible in prenatal care, before there's a tremendous amount of blood flow to this area. But oftentimes it's really not performed until the time of delivery, in which case, of course, it's necessary to actually allow for vaginal delivery, but should not and legally cannot be reinfibrillated even by patient request. And so, to do this, it's really helpful and important to not just lice down the middle, with a scalpel or with electrocautery, but to really try to dissect out layer by layer and then to reclose. You can see sort of with those interrupted stitches there to essentially marsupialize that androitus and close the mucosa over to those skin edges so that it doesn't fuse back together afterwards. Okay, next slide. And we know that this leads to improved obstetric outcomes. So, the women who have been defibrillated have lower rates of cesarean suction, of episiotomy, of second, third and fourth degree tears and have improvements in one minute Apgar scores for their neonate. And so, as early as we can do it, it's important to do it. And so, for the obstetric colleagues, it's really important to talk to patients about this at the beginning of pregnancy to really get people into prenatal care as early as possible so that it can be done sooner. Next slide. So, there are other procedures out there that are known as clitoral restoration and which in full transparency, I have never performed, but I have read a lot about and watched a lot of. And I want you to be aware that they are available and that there are some centers in the United States that do them. The technique was first really pioneered in 1998 by Pierre Valdez in France. And he first published his outcomes in 2012 after performing the procedure in around 3,000 women. In 2004, the French health system actually started to recognize these surgeries and pay for these procedures. And so, his volume really escalated from 2004 to 2012. The surgeries were not performed as to be intended for research really, but really under usual clinical care. And so, there was no IRB required and no specific follow-up required. And so, a lot of the published literature that we have from this series is just whatever, you know, he was able to produce through chart review. He assessed patients' expectations for pain and clitoral pleasure on a five-point Likert scale. It was not a validated scale. And, you know, since 2012, when he published this, he has trained a number of both European and American surgeon colleagues on how to perform this technique. You know, I think he has really sort of monetized the training for this. I, myself, tried to go and get trained and found it to be very expensive and, you know, sort of out of reach, I think, for many surgeons unless this is something that you want to be doing as a routine part of your practice. Next slide. To describe the procedure briefly, and you can see sort of the pictures of it there on the right and the dictation that he provides in his article in 2012 is there on the left. Essentially, the way the procedure works is that he makes a buttonhole incision over the fibrotic area, you know, between the pubic symphysis and where the clitoris used to be, dissects down to where the remainder of the clitoris is, you know, sort of retracted back behind the pubic symphysis, pulls it forward, cutting through the suspensory ligament of the clitoris, pulling the clitoris forward and then reattaching it in that kind of protruding fashion, sort of reattaching it there to the periosteum of the pubic symphysis and then to the skin externally. And so he describes how he does that. And then next slide. You can see some of the images of kind of what things look like pre-op and post-op. So on the left is the pre-op picture of this individual who had type 1 FGM. And then you can see at days, sorry, this is type 3 FGM, but the defibrillation already happened. You can see there on the other pictures post-op day 67. So this is, you know, two months out, then around three months out is the middle bottom. And then six months is the bottom right. Okay, next slide. And this is in a patient with a history of type 2B. So this is, you know, removal of the labia minora and the clitoris. And this is the clitoral restoration at various stages. Again, sort of around a month and a half, you know, three months, and then around six months. Next slide. So in the manuscript that he published in 2012, he describes that, you know, he operated on around 2,900 women. Many of them were from Mali, Senegal, and the Ivory Coast. Although actually about a fifth of them had undergone FGM while technically residing in France. Not clear whether this was sort of a return to their country of origin and vacation cutting, as it's called, or if it actually happened in France. But there was a large number who had it done while there in France. Their mean age was 29 at the time that they presented to him. Most FGM typically occurs between the ages of five and nine. And then he describes that the expectations of these patients before surgery were for identity recovery for the vast majority of them, but also for pain reduction and improved sex life. It's important to know when you look at these results that the one-year follow-up rate was 29%. And so clearly we're not capturing a lot of the outcomes from these patients. But he does report that at one-year follow-up, most patients reported an improvement, or at least no worsening in pain. They had an improvement in clitoral pleasure. And at one year, 51% of them experienced orgasm. I also think it's important to know that only 24% actually had a visible clitoral projection at the one-year follow-up. And so for those who really wanted identity recovery or restoration of normal anatomy, or some of the words that people use to describe their expectations of this, that really wasn't achieved in a number of these women. Next slide. So recently, after people have done these surgeries in many places and tried to really optimize the post-op experiences of these individuals, some of the more recent data is kind of looking for how do we really reduce pain, reduce perioperative risk, and really improve the healing. I think there are some promising things coming out. Dr. Abdul-Qadir, who I mentioned before, is doing some research on PRP injection at the time of clitoral restoration to really reduce pain. Because one of the major things that patients talk about as a post-operative complication is that the prolonged recovery really triggers their PTSD of their initial cutting and the recovery from that. And so the desire to decrease post-operative pain is really important in these patients. And so these are some very early outcomes. These are only five patients in this case series, but it's something that people are really actively trying to study and improve on. Next slide. So I really like this systematic review because it actually looks at a pooled population of patients across many countries in which this is performed. So this is not just a single site, but really looking at clitoral restoration being done, typically in France, in the UK, in Germany. Those are the main sites in Europe where this is happening, and a couple of studies here from the US. So this included 62 studies in which they investigated the effect of defibrillation, excision of cysts, and clitoral reconstruction in patients with FGM. And where they report that a substantial proportion reported improvements in their sexual life and sexual function anywhere between one to 12 months. And you can see the data there on individual kind of improvements. But many reported improved clitoral function and pleasure and improved frequency of sex. But I think that the last line of this is really important, that 22.6% of women who had regular orgasm prior to the surgery reported restricted orgasms after. And so I think that while there are many who do get improvement, there's also a really sizable minority who are the same, if not worse. And so I think as a result of that, there's really a controversy, sorry, next slide, a controversy about whether or not this is something that we should be offering and how best to counsel patients on the expectations around the surgery. It's also a surgery that is, you know, done by a number of different specialists who I think have some different experience and some different kind of goals in terms of how to optimize women's health. And so in different places, it's done by gynecologists, urologists, plastic surgeons, and there's very little interdisciplinary communication or publication around best practices. I also think that here in the West, there's sort of a moral push that comes from a number of organizations. One that comes to mind specifically is ClitorAid, which is an organization that really religiously believes in clitoral restoration and thinks that this is something that should be forced upon individuals who have undergone FGM, which really sort of feels like its own version of FGM. But in any case, I mean, I think that there's a lot of controversy about how to move forward with this. Next slide. I think that, you know, this paper by Dr. Abdul-Qadir, again, really kind of highlights the pros and cons that should be really explicitly listed out to patients as, you know, as they're thinking about this and, you know, the potential risks and the potential benefits and the data that we have from all of these systematic reviews on these risks. And so in each case, you know, she really advocates for asking what are the intended benefits of clitoral restoration in this patient? And do these benefits really outweigh the risks for this particular individual? What kind of autonomy do they have? Are they able to provide informed consent? What kind of pressure are they getting from their community or from the legal system? You know, if they're looking for asylum, right, are they, you know, coerced into this kind of procedure? Next slide. Next. So I think it's important for all of you to realize that, you know, because of the prevalence of this worldwide and because we are a country, obviously, that has a high rate of immigration, you will be seeing this in your patients. We know that the estimates here in the U.S. are that probably around half a million individuals are affected or at risk in the U.S. and that this is really increasing over time, partially due to immigration, but also because there are some small communities within the U.S. that practice this. Next slide. So you can see the distribution here in terms of, you know, places where it is most commonly seen. Of course, this is a lot of major cities and areas with large communities that, you know, are from either East Africa in Somalia, Egypt, or Eritrea, or from Mali. Next slide. So in terms of the legal standing here in the U.S., it is, of course, against the law in the United States to perform or attempt to perform or conspire to perform FGM on anybody under the age of 18 or to send them outside the United States for the purposes of FGM. There is no exception for performing FGM for religious or traditional reasons. And importantly, violating those laws, even without a criminal conviction of it, may actually have a significant immigration consequence for the individuals involved. Next slide. So what is our role in mandatory reporting in this? First of all, there is no need to report FGM in an adult, and probably most of you are seeing adult patients. However, if a patient of yours with FGM has daughters, you know, you should find out if they have had FGM, if they have plans to have FGM. There's sort of this culture of vacation cutting where sometimes individuals are brought back to their home country over summer vacations to undergo the procedure. And so it's important to know. And in those cases, you are a mandated reporter. This is prosecuted as child abuse. And below, you'll see there are sort of the phone numbers for, you know, where you can make those reports. Obviously, you should disclose to the person that you are making that report and why this is so important, but it is still considered mandatory reporting. Next slide. And then I think this probably goes without saying, but FGM should never be performed by medical professionals here in the United States. And that, you know, trained health professionals who do this are violating the rights of girls and women and their right to life and physical integrity. And that in general, the ethics around this has been that medicalization is not the same as harm reduction. And that there's really no evidence that medicalizing the procedure reduces the obstetric or physical sequelae. Certainly, it reduces the risk of infection or hemorrhage at the time of the procedure, but it does nothing for those other complications we discussed. And it is against the professional guidelines and position statements of all of our major organizations and certainly including ACOG and OGS. Next. So what you can do. If you have individuals who are interested in potentially seeking asylum on the basis of FGM, you should know that there's a mechanism for this. The first cases were awarded in 1995 and there's been a consistent stream ever since. So for women who have experienced FGM or who wanna protect their daughters from FGM or who are being threatened essentially either here in the US or from their home country that they would undergo FGM if they were to return. In all of those cases, if you go on the Physicians for Human Rights website and you kind of fill out this forensic evaluation request, this goes out to local trained experts in your area who then connect both the physician and an attorney who will kind of work together to put together the case for this patient. Next slide. If you do have a patient who's interested in clitoral restoration, it's important to know that these clinics do exist and there's a list of them there across the US. Very few providers actually do this and a lot of that has to do with lack of insurance coverage and kind of creating a system that would allow for pre and post-operative care. I also think that, of course, this is not something that anybody should be dabbling in, right, it's something that needs the appropriate training and continuity with patients and so these centers really have sort of established themselves as centers of excellence or high volume essentially in this. Next slide. So really to summarize, I mean, I think that in your practices, it's important to provide respectful and nonjudgmental care to women and girls with FGM who you see and have a list of culturally appropriate psychosexual practices in your area who might be able to help with the mental health component and the sexual health component of what they've experienced. To be really cognizant of the fact that reconstructive surgery does exist and even though there's really mixed evidence for it and there are important risks to discuss, I think that it's also paternalistic to not discuss the option of that with our patients or to block them from seeking that out or to make them, you know, try conservative measures before seeking that out and so I think it's important to know what the resources are and to allow patients to choose whether that's something they want to pursue. You should know how to perform defibrillation if needed by your OB colleagues and be able to assist any undocumented women and girls here in the United States to seek asylum and then hopefully to be able to educate your colleagues, you know, the majority of whom are not trained on what this looks like, the variations of FGM and how to document that appropriately. Thank you very much. I'm happy to take any questions. Thank you so much for such a good talk. While we're waiting for a few questions to pop up, I was just curious if you could speak to like the basics of post-op care after defibrillation. It's not a procedure that I think many of us do very commonly. If we are called upon to do it, are there specific things that you recommend? I think, you know, with respect to the anatomy, many of us would feel mostly comfortable, but I'm curious, you know, post-op management. Yeah, I mean, I think that the first thing to realize is that there's probably going to be some fibrosis in that area. And so the typical tissue planes that you would expect are not going to be there. And that, you know, the tissue itself probably is really friable and sutures might pull through and you probably need a lot more sutures than you think to actually get good tissue and growth and re-approximation. The other thing is I typically would lay, you know, iodinated gauze over that area. You know, this is obviously an area that is prone to infection just in general, but you really want to be using iodinated gauze or sylvadine or, you know, something like that for really good wound care over the couple of weeks that it will take for the tissues to heal. And then if you're doing this while somebody is pregnant, there's obviously going to be a lot of blood flow in that area. So making sure that you don't develop hematomas there and that you have passages for drainage. And so doing interrupted sutures rather than continuous suturing is important so that you don't develop, you know, hematomas. And then I think really considering a Foley catheter for a prolonged period while, you know, it's possible for them to urinate. I think, again, that creates a lot of pain and potentially PTSD. And so I would strongly encourage a Foley catheter use until everything heals. You have patients routinely dilate post-op? Do they need to? So, you know, it depends. They shouldn't need to dilate, assuming that the actual vaginal canal itself is, you know, is patent and intact. If, you know, if you're worried just about reclosure, you know, it depends. Like if you see them in the, you know, in the weeks following and you see that, you know, some of the sutures didn't take as well as you wanted to and that there is a scarring from side to side, you certainly can have them dilate, but typically that's not needed. Okay, great. One of the questions is along the same lines, is there any benefit to pelvic floor physical therapy following defibrillation? I mean, definitely. I can't think of a example where physical therapy is not of a benefit. It's always a benefit. I think, you know, if the patient is open to it and you have, you know, physical therapists who are of course, you know, trauma-informed and, you know, informed about this patient's anatomy and kind of their history, absolutely. I mean, I would do that for these patients who have LUTs. I would do it for patients who undergo defibrillation. For those who undergo clitoral restoration, they should all get pelvic floor PT. Dr. Park says she loved this talk. It was great. And she's wondering if you can- Thanks Dr. Park. Drop the asylum website and paperwork in the chat just for reference. I could, if my computer was working and I was able to give this talk on a computer, but I can't on my phone. So, but I will, Dr. Park, I will send that to you and I'll send it to Tashi who can circulate it to the participants. Great. And then the last question is, do you have any specific recommendations for managing LUTs in patients with a history of FGM, especially if it's causing urine spraying or recurrent UTIs? Yeah, yeah, great question. So I think if it's causing urine spraying or recurrent UTIs because of tissue that has sort of overlapped over the urethra, I think that that's a medical cause for surgical reconstruction there. And I have done that in a couple of cases where there's essentially retrograde urination happening because of how much fibrosis there is over the clitoris and the anterior portion of the labia minora that had basically fused over the urethral meatus. In those cases, I do think that that is legitimate and helpful. And for many others who have urgency frequency, really in that case, the issue is more so pelvic floor dysfunction and that's where I think PT is so important. Great. That's it for questions unless anyone else has a few more last minute ones. Thank you so much for giving such a great talk. It was really outstanding. On behalf of AUGS, I'd like to thank Dr. Guinness-Ventan. Please be sure to register for our upcoming webinars. On August 28th, Dr. Cassandra Kisby will be presenting a webinar entitled Complex Vaginal Reconstruction. You can follow AUGS on Twitter and Instagram and check our website for information on any upcoming webinars. Thank you all for joining and have a great evening. Thank you all so much.

female genital mutilation

circumcision

FGM

surgical corrections

defibrillation

clitoral restoration

mandatory reporting

asylum

pelvic floor physical therapy