Episode 8
Understanding PGAD: Treating Persistent Genital Arousal Disorder with Multidisciplinary Approaches
Have you ever encountered the term PGAD? Despite its relative obscurity, it gained some mainstream attention in the early 2000s, even prompting a Saturday Night Live skit that portrayed it as a condition one might desire. Which is far from something that someone would actually want.
Today I give you a comprehensive overview what PGAD is discussing its history, prevalence, symptoms, and the significant impact it has on a patient's life.
I emphasize the distressing nature of PGAD and how it can often lead to severe impairment of daily living and even suicidal ideation in some cases. This candid discussion addresses the need for awareness and understanding of PGAD and its far-reaching effects.
I also delve into the multi-faceted approach to treating PGAD. I outline the different regions of the body that are considered in the diagnosis and treatment of PGAD, including the end organ (genital pelvic region), the pelvic floor, the spinal cord, and the brain.
I highlight the importance of a multidisciplinary treatment approach, involving various specialists, therapists, and clinicians, to tailor treatment plans for individual patients.
Highlights:
- PGAD is a condition associated with persistent and intrusive genital arousal sensations, without corresponding sexual desire or thoughts.
- Diagnosis and treatment of PGAD often involve a comprehensive, biopsychosocial approach, with multiple specialists collaborating to address the condition from various angles.
- Education and advocacy are crucial in raising awareness and providing support for individuals experiencing PGAD.
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Transcript
Hey, y'all. It's me, Dr. Smeenerman, Gyno girl. I did a podcast. Excuse me. Sorry. Hey, y'all. It's me, Dr.
Dr. Sameena Rahman [:Smeenerman, Gyno girl. So excited to be with you guys today. Again, I did a podcast with. I'll do that again. Hey, y'all, it's me, Dr. Saminir, mon Gyno girl. I'm excited to be here today. I thank you all for joining me in my journey here to educate so that you can advocate.
Dr. Sameena Rahman [:Today, I want to talk about a condition that I see in my office. I did a YouTube video about it, and I've done a couple of Instagram informative posts about it. It is a condition known as PGAT, or persistent genital arousal disorder, also known as genital pelvic dysesthesia. Now, a week or two ago, I did a recording with a good pal of mine and an amazing pelvic floor physical therapist, April Patterson. So, this is a precursor to that, so that you guys have a good understanding of her journey. She was actually not only a patient with PGAD and a very long journey with that, but also someone who has now become an expert in treating the pelvic floor for this condition known as persistent genital arousal disorder. So today, I want to review what that is, how we usually treat it, and some basic information so that when you listen to April's talk and her interview, you'll have a good understanding of sort of what she went through. So let's get at it.
Dr. Sameena Rahman [:Hi, everyone. So, thank you for joining me today for a new discussion. Just me. I'm going to be talking to you about a condition I treat in my office as a sex med gynecologist. It's known as persistent genital arousal disorder. Please, when you have time, please like and subscribe to my podcast. Please write comments. Tell me what you think.
Dr. Sameena Rahman [:It'll help boost my podcast so that more people can learn about these conditions and get the help they need. So, I'm a gynecologist in downtown Chicago with the specialty in sex med and menopause and pelvic pain. A couple of other things. One of the conditions that I've been treating for probably the last five plus years, actually 2017. Okay. One of the conditions that I've been treating probably for the last six or seven years in my office, I've been in private practice for almost ten years as a solo gynecologist. It's a condition known as persistent genital arousal disorder. PGAD is the acronym.
Dr. Sameena Rahman [:We refer to it. PGAT is what we refer to it as. And it is one of the most challenging conditions that I think that we treat in sexmed, but also one of the most gratifying as well when it comes to helping patients overcome this. But it always leads to a long journey. It is a condition that was first discovered or reported in 2001 by some amazing sex med clinicians label it Nathan. And it was just known as persistent sexual arousal syndrome at that time. That was in 2001. So that was 23 years ago.
Dr. Sameena Rahman [:It was a case series of sort of five women, and the features were this unremitting genital arousal that were noticed in the absence of conscious feelings of sexual desire. There was no obvious hormonal, vascular, neurological, or psychological causes at that time. And then in 2006, labelum revised the name and the condition to persistent genital arousal disorder. What's become amazing is the organization that I speak about a lot, that I'm on the board of, and that I'm in. Multiple committees in the scientific committee is the International Society for the Study of Women's Sexual Health. And in 2016, they came up with this wonderful process of care for PGAD. So it really can help guide a lot of clinicians in treating it. Let's first talk about just a definition.
Dr. Sameena Rahman [:How we treat it becomes very complicated, but it's always just like most of sexual medicine is a biopsychosocial approach. But the ishuish executive committee came together and they came up with a consensus on attributing factors on treatment and a very thorough process of care, which is available online for those of you who potentially can treat this condition, or can at least guide your patients for this. But essentially, the condition is obviously understudied, but probably affects 1% to 3% of. And I'm speaking about females or those that are born with vulvas when it comes to PGAD. Today, there's other potential issues around with male PGAD. Sorry, excuse me. And today, I just want to emphasize, I'm just speaking of persistent general arousal disorder when it comes to vulva owners. So the overall sort of.
Dr. Sameena Rahman [:When you talk about epidemiology and the prevalence, anywhere from one to 3%, depending on the study that you read, it's understudied and it's probably under diagnosed pretty significantly, but it has a dramatic impact on the quality of patients life and even their desire to live. 75% of patients that responded to one survey by labelum in 2005 showed that their distress was very moderate to high. Sorry, let's just x that part out. PGAT is a condition that's associated with really significant impairment of function, impairment of daily living. Some people cannot drive, they cannot do their housework or social activities, cannot have sexual relations in the capacity that they want. Their quality of life is awful. And most of my patients that I see trigger warning have contemplated even suicidal ideation. In fact, a survey of women experiencing symptoms of persistent genital arousal disorder noted that 54% of these patients reported experiencing some degree of suicidal ideation.
Dr. Sameena Rahman [:And I see this in my office, especially the patients that have had it lifelong or even for just months to years. The risk factors for those that do have suicidal ideation are really depression, prior suicide attempts, attempts for comorbid conditions like substance abuse, prescription drug misuse, or interpersonal stressors, particularly with relationships. And so anxiety and catastrophization actually contribute to that as well. But in general, it's. Yeah, but general, the criteria for really the diagnosis of this disorder, which is either a persistent general arousal or genital pelvic dysthesia, PGAD or GPD. It's a persistent or recurrent unwanted or intrusive distressing sensation of genital arousal for more than three months. It may include genital pelvic dysthesias, like buzzing, tingling, burning, twitching, itching, pain. Most commonly, it's experienced in the clitoris, but can sometimes be in the labia menorah, the vulva, or any part of the vulva, the vestibule, the urethra, the perineal area, the bladder.
Dr. Sameena Rahman [:It may include patients that are on the verge of orgasm or experiencing uncontrolled orgasm or having an excessive number of orgasms back. I want to say like ten years or so ago, there was these skits that came out when PGaad got some attention in the social atmosphere. I think there was a skit that was done on Saturday Night Live where this patient with this woman was making fun of the fact that she was having these orgasms. And I know that a lot of people found this as very entertaining. I find when I reviewed that recently, and I'm going to do a YouTube video on it, I found it quite distressful that people were making fun of the fact that these patients were on the verge of orgasm or had to orgasm to feel to relieve this distress. Many times that doesn't help a lot of my patients, but this is a very distressing condition that we should not take lightly. Again, it's most commonly experienced in the area of the clitoris, but any genital pelvic area, the moms, the ball, the vestibule, which I'm going to do a separate discussion on what is the vestibule and how that's related to most of what I do in my office. And the big factor here is that any of these sensations, any of these feelings are not associated with concommitment to sexual thoughts, fantasies or interests.
Dr. Sameena Rahman [:And that's big. The associations can be limited resolution or no resolution when you have sex. A lot of patients, they try to have sex to see if they can improve their symptoms, and it doesn't go away. They might have a compromised orgasm as well, because they're thinking they might alleviate their symptoms, but sometimes become averse to orgasms or alter the frequency or intensity or timing of the pleasure. Certain conditions can really aggravate this condition. So sitting or car driving or certain musics or certain things that make you more anxious. Again, when patients start catastrophesizing that this is not going to go away, this also has a significant impairment of their life. And really, on physical exam, there's no evidence of general arousal, lubrication, swelling, or anything else.
Dr. Sameena Rahman [:So we have this condition. If you know any patient, sometimes it's associated with restless legs. Sometimes it's associated with a multitude of other conditions. Depression, obsessive. Obsessive compulsive disorder, catastrophization, or hyper vigilance can be associated with sexual trauma or emotional trauma. Some of the patients I've seen that have had it since they're five or six years old, really can even remember some sort of sexual trauma that may have incurred. Usually there is a hypertonic pelvic floor. There might be something to do with your potential nerve, some medications that might be contributing, which we're going to talk about a little bit more.
Dr. Sameena Rahman [:When I have a patient like that in my office and they have this condition, this persistent general arousal, they're in a lot of distress. These appointments are very traumatic. For the patient to relive some of this, but we have to take a very detailed history. That's first. I would say, like, over half of what I do when it comes to this is really letting the patient speak about all the issues they've had leading up to these PGAD feelings when they started, what makes it better and what makes it worse, what they've noticed. I would say that one of the most compelling things a patient told me recently was that she was someone that experienced it lifelong, when it made a big difference for her, was to realize it was an actual condition, that it wasn't in her hair, that she shouldn't have shame associated with it, which many patients feel like an intense amount of shame, or they were shamed when they were younger. And she said that the fact that I could finally google and find it on my website on ishwish, website on proceela, which is the patient facing website for ishwish. The international study for the Study of Women's sexual health, again, was very gratifying to her that this was a condition with a name, and it meant a lot to her that she found that.
Dr. Sameena Rahman [:So that was one of these things that really hit home to me, that sometimes just naming the disorder and normalizing that this is something that exists and that you're not alone, that there are other patients or boba owners that have experienced this can make a big difference in just alleviating some of the angst that these patients feel. But after a good know, the way that we really approach any of these genital pelvic dysthesias, it is remarkable. Know this consensus. Know with Erwin Goldstein, who, again, is like the godfather of sexual medicine, and a whole slew of other ish wish clinicians came together, and they came up with this approach to how to deal with this condition of PGAT or any kind of, like, clitoral pain or nerve related pain, numbness signaling down there. Okay. Down there, meaning in that genital pelvic region. And so, based on the expert opinion, what we look at is to better understand and to better diagnose and to better treat. Again, this is going to be treated from a biopsychosocial perspective.
Dr. Sameena Rahman [:There are going to be multiple clinicians, therapists involved in the treatment to get patients better. And so the first thing is finding someone who can kind of oversee it or get you connected. That's a lot of what I do. But the first thing we look at is a region based approach. So there are five regions that we look at. Okay? So, of course, number one is the end organ. When I mean end organ, I'm talking about the genital pelvic region, right? So we're going to look at the end organ first. The second region is your pelvic floor, which is the muscles of the pelvic floor.
Dr. Sameena Rahman [:The third region is the Cada Aquina. You may remember me speaking about that in an earlier podcast, which is where you have the nerve roots that converge at the end of your spine, your backbone. Basically, we're going to look at the spinal cord, essentially the lumbar sacral area, and see if there's anything else going on with those nerves that are exiting the spinal cord. And then finally, we look at the brain as another region. So those are the five regions that we talk about. So the first thing we always do is a physical exam. When it comes to the end organ or region one. We're going to look at the clitoris first.
Dr. Sameena Rahman [:We're going to see, is there a hypersensitivity to the clitoris? We're going to look under a vulvoscope and look for any, what we call clitoral fibosis or adhesions. We're going to see if we can't retract the clitoral hood, what percentage that is, because there is a possibility that if there is significant clitoral adhesions, we can lice those adhesions and take out any of these, the schmegma that exists under there. Just like men can get schmegma, clitoris owners can get schmegma as well. And then remove these keratinized pearls underneath the clitoral hood. And sometimes that will help patients alleviate their symptoms of PGAD. We also have to look at the volva as a whole. We want to make sure that there's no signs of inflammatory skin conditions or dermatoses of the Vula. So that's very important as well.
Dr. Sameena Rahman [:So we will look at that. We will do a clitoral anesthesia test. We put anesthetic agent over the clitoris, see if the pain or the sensations go away. We do the same when it comes to the vestibule, which is the next sort of area of the end organ. So the vestibule, if you remember from any of my previous information I've given you, is the area between the inner labia menorah extending to the hymenial remnant. It's the opening of the vagina and extends up toward the urethra and down toward the perineum. And so it is the opening of. It's like the vestibule of a room.
Dr. Sameena Rahman [:This is the vestibule of the vagina. And so it is vulvar vestibule. It has very unique tissue that's kind of consistent with the kind of tissue that we have in our bladder. And so, at least embryologically, we know there's some differences there. There's androgen receptors. There's estrogen receptors. And so sometimes people can have pain with sex at the entry that's related to that vestibular pain, or vestibulatemia. We call that provoked vestibulatemia, which means that you're trying to do something, have sex or anything else, and it's causing pain.
Dr. Sameena Rahman [:So sometimes alleviating any kind of vestibular issues. Either this increase in nerve densities, we're going to talk about neuroproliferative vestibulody, where you're either born with too many nerve endings in the vestibule or you acquire it over time from inflammatory conditions. So we're going to look at the vestibule, that opening. We're going to see if the hormones are related to that, if there's any hormonally mediated vestibular, that means that, have you been on birth control since you were 15 and that's contributing. Are you postpartum? Have you had cancer treatment? Are you post menopausal? Are any of these things contributing to this hormone deprivation that can happen at the vestibule, that can cause pain and sometimes be related to persistent genital arousal? So vulvar dermatoses, lichen sclerosis, lichen planis, those are inflammatory skin conditions that may have autoimmune origin. I've done some videos on that for YouTube as well as in my instagram, and I will be having some discussion with patients who have these conditions so you guys can learn more about it. We will look at the vagina and see if there's any kind of inflammatory vaginitis. We call it inflammatory vaginitis.
Dr. Sameena Rahman [:There might be people that have chronic candidiasis or allergic reactions that may be contributing to that discomfort. And then, of course, we have to look at the bladder and the urethra to see if there's any pain syndromes associated with that. So all of that is just the end organ, which is region one. Again, your gynecologist, your clinician, your urologist, whomever you are seeing can really help assess with that. And then I also look very closely at the pelvic floor. We're going to look at whether or not you're having symptoms of urinary frequency, urgency, hesitancy, incomplete emptying, holding your urine, constipation, changes in your stool. We're going to see if the posterior or the lower part of the vestibule is only involved. That means you might have a hypertonic pelvic floor.
Dr. Sameena Rahman [:We know that hypertonic pelvic floor is associated with anxiety. It's associated with lower back pain, with hip pain, and overly exercising your core can cause issues down there, too. And so we're really going to look at that very closely. And pelvic floor therapy is almost always included into the multimodal treatment modality for persistent genital arousal disorder. At the same time, we can look at whether or not the peripheral nerve that kind of innervates the clitoris, the vulva, the muscles down there, which is the pudendal nerve, which can be compromised in trauma, in surgeries, in deliveries from too much peloton or biking. You can get these saddle injuries that can result in a pudendal nerve issue, which can be diagnosed with some nerve blocks, and then we can look for treatment options. And the pudendal nerve issues can also be contributing to PGAT. We'll do a separate talk on pudendal neuralgia and then any kind of increased congestion or pelvic congestion within the pelvis as well.
Dr. Sameena Rahman [:So that's region two. And so again, my pelvic floor therapists are on speed dial. They're my best friends, I love them, and I have one in my office who's amazing, who will also be on the podcast. And so that's always incorporated into the treatment of PK. And then the next thing we often do is just do a MRI without contrast of the lumbar spine, and that will capture some of the sacral area as well. And we are looking for these. There's a cyst that can generate into in your epidural space called a tarlov cyst, which sometimes is associated with. These spinal cord abnormalities, are associated with sexual pain, sometimes increased in.
Dr. Sameena Rahman [:Sorry. We look at the spinal cord. We're going to look for tarlopsysts, which we'll talk about at some point in Detail. We're going to look for annular tears or any kind of radiculopathy that may be evident on MRI or on physical exam with other symptoms, so that we can see if region three, the cada aquina, or region four, the spinal cord are involved. This is when I integrate interventional pain, who happens to be my husband, into the mix of trying to help these patients. And then we also look at potential neurosurgery or orthopedic surgery that specializes in the spine to see if we need to do anything for these annular tears to remove tarlov cysts and other issues. So that is another component to it. Then we have to look at region five, which is the brain.
Dr. Sameena Rahman [:Right. We're going to see if is there initiation or termination of any antidepressants or antipsychotic meds without weaning appropriately? Are you on any kind of treatment for Parkinson's that might be contributing, because we know those can increase your dopamine? Are you associated, are there any head injuries we should talk about? Concussions, any brain surgery, history of seizures or Tourette's syndrome, hyperthyroidism or iodine supplementation. We want to look at all of that. Okay, so that's region five. And so we will look at your medications. Trazodone is one of these med sets associated with PGAD. And look at all the list and see how this might be contributing. So you can see we have multiple regions, and we approach it in that capacity so that we can integrate.
Dr. Sameena Rahman [:And then almost always sex therapy is involved. And then sometimes if we're treating the anxiety, depression, all of that stuff, we have to involve psychologist and psychiatrist. So this is, again, a very disruptive condition. It is life altering for patients and life inhibiting. And we do our best to try to navigate their care and incorporate as many specialists as we can to really get to the bottom of this. And most of my patients do really well. It's not a quick fix. Sometimes it takes months, sometimes it takes over a year, depending on how long you've been having it.
Dr. Sameena Rahman [:What we think the major contributing factors are, is it region five, the brain? Is it region one? Region one tends to be a little bit easier in terms of getting some symptom relief. One time I had a patient who just all had pelvic floor spasms, and that was easier to do. So we have our algorithms. We take each patient and individualize and individualize their care with multiple different specialties involved. And if you're not getting that type of care, please go to ww dot ishwishiss.org and find yourself a clinician in your area who knows about this condition number one. Number 2 may or may not have the experience to fully treat, but most of them do have a lot of experience with sexual dysfunction issues and can help you navigate through this journey. And pelvic floor therapists, like I said, are on speed dial. Over here we have sex therapists, psychologists, psychiatrists, interventional pain and spine surgeons.
Dr. Sameena Rahman [:So it is a multimodal approach. It's multispecialty, multidisciplinary, whatever you want to call it. And so that's very important for this. So that's basically an overview of PGAD. I'm going to have other patients that have experienced this, I'm going to have other experts in this, and we're going to get to the nitty gritty about PGAT persistent genital arousal disorder. And so please stay tuned for future episodes. You're going to hear an episode with April Patterson, who is a physical therapist, amazing physical therapist on the west coast, who also has been a patient with this and is one of the leading experts in physical therapy. When it comes to PGAD, so please stay tuned for that on the next podcast.
Dr. Sameena Rahman [:And thank you once again. I am here to educate so you can advocate. So we will see you next time. Thanks so much. Please tune in next time. Thank you so much.
