Episode 374: Living with Persistent Genital Arousal Disorder
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You're listening to the Sex and Psychology Podcast, the sex ed you never got in school and won't get anywhere else. I am your host, Dr. Justin Lehmiller. I am a social psychologist and research fellow at the Kinsey Institute and author of the book, Tell Me What You Want, The Science of Sexual Desire and How It Can Help You Improve Your Sex Life. Close your eyes for a moment and imagine what it would be like if your genitals were in a near constant state of arousal every single day.

You have non-stop pulsing and throbbing sensations, and it feels like you're always on the brink of orgasm. However, this arousal is unwanted and uncontrollable. Stimulating yourself to orgasm might provide some relief, but it's only temporary. The arousal just keeps coming back.

Some people have this experience, and it's known as persistent genital arousal disorder. It's one of the most distressing sexual dysfunctions because it makes it difficult, if not impossible, to concentrate, to work, to sleep, to do almost anything in everyday life. In today's show, we're going to dive into what we know about persistent genital arousal disorder. We'll explore how common it is, what the symptoms can look like, what causes it, and how it's treated.

We'll also explain why this disorder can potentially emerge at any stage of life, as well as the fascinating connection between this disorder and obsessive-compulsive disorder. We've talked about persistent genital arousal disorder on the show before, but today we're diving into the latest research and speaking with someone who frequently treats patients with this condition.

I am joined once again by Dr. Samina Rahman, a board-certified OB-GYN, sex med gynecologist, and menopause specialist with an academic affiliation at Northwestern University's Feinberg School of Medicine. She is the founder of the Center for Gynecology and Cosmetics and host of the podcast, GynoGirl Presents: Sex, Drugs, and Hormones. This is going to be another fascinating episode.

Before we get to it, here is today's top three segment presented by Field. Field is the dating app for the curious where you can go on a journey of self-exploration. It's a place that recognizes that change is par for the course when it comes to our sexuality. In fact, Field offers more than 20 different ways to identify your gender and sexuality, as well as the ability to indicate your desires and interests, which you can change as many times as you want as you come to understand yourself better.

It's an app that doesn't tell you what you want and instead leaves you in control because after all, the only person who can determine what you like is you.

To that end, our top three segments are designed to equip you with the knowledge you need to assist you on your own journey of sexual self-discovery. In these segments, my friend Ashley Weller, host of the amazing What's Your Position podcast, is joining me and we're sharing our top three tips for exploring a different aspect of your sexuality. Today, we're diving into the subject of exploring your sexual fantasies. So, Ashley, are you ready to talk about fantasies?

A hundred percent. All right. Lay it on me. What's your first tip for exploring fantasies? Okay. This one's a little outside the box. Write them down.

Writing down your fantasies on paper or in your notes app on your phone can make them feel more real, more tangible, and can actually help you explore them with more ease than just having them in your brain. Plus, reading them back to yourself can be really, really hot. That is very true. And I think that is an excellent place to start when it comes to exploring fantasies.

Now, there are lots of different ways you can think about this question of how do you explore your fantasies. And the way that I was sort of approaching it when I was coming up with my tips was how do you talk to your partner about this in the first place, right? So once you go from that process of self-discovery and better understanding your own fantasies, like how do you communicate about that with a partner? And my tip for this is to share your fantasies with your partner in a way that validates them.

Right. Because there's this risk that happens when you share a fantasy with a partner that they might interpret that as, oh, you're not happy with our sex life. Oh, you're no longer attracted to me. And it can bring up all these feelings of insecurity. So if you can present the fantasy in a way that validates them, that's going to increase the odds that it will be received negatively.

favorably. And also maybe consider not sharing your wildest and most extreme fantasy right off the bat, right? Because if you've been having just very vanilla sex for a very long time, and then you come in with this very wild, elaborate kink fantasy that you want to do, that might be too much too soon, right? So baby steps and present it in a way that validates your partner.

I love that. I came at this from a perspective of individuality and exploring fantasies from a solo perspective. So I love that yours are exploring a fantasy through the coupledom or through a partnered relationship. I think both are extremely important and I don't think you can have one without the other, honestly. No, and I think it's so true that like you got to start first with like the sexual self-acceptance piece. And so I think your tips are going to be really great for that. So what's your second one?

On that note, my next one is to let go of shame. Sexual fantasies do not have to translate into real life action. As a matter of fact, sometimes they can't, right? If you have a sexual fantasy of having sex with a mermaid, I...

I don't really think you're going to be able to accomplish that. So let go of this idea that every fantasy needs to be turned into some real life adventure and let go of your shame. You should never feel guilty about fantasies that you are having. You deserve to experience pleasure and your fantasies deserve to be explored in a safe, sane and consensual way.

mermaid fantasies this is reminding me of a time when stephen colbert was actually talking about some of my sexual fantasy research on his show and after he talked about that he tied it in with this segment about these women who like dress up professionally as mermaids for like kinky role play kinds of things and i think he called them merverts which is my favorite term so yeah

I love that you have Stephen Colbert in your corner. Yes. All right. So yes, dropping your sexual shame, unburdening yourself from the shame is a really, really important aspect of all of this. So my second tip was before you act on a fantasy,

Do a risk-reward analysis, right? Think through all of the potential good things and bad things that might happen through exploring this fantasy. And when I say exploring this fantasy, that means communicating about it with your partner and also acting on it, right? What are the good and bad things that can happen in each of those?

And the goal is basically just to let's identify the concerns, some of the red flags, things that might potentially go wrong so that we can have a plan in place for how to mitigate them because nothing ever goes perfectly. Right. And our fantasy doesn't always translate in the real world exactly as we see it in our heads. So it's just good to go into it with some understanding of, you know, where might things potentially go wrong so that we can take proactive countermeasures to reduce the risk of that.

I think that's brilliant. You can't account for every possible malfunction, but understanding some risk and some reward can actually help you see, and that's very researcher of you, Justin. I love that. Sort of see the cost benefit analysis and anything we do in life has a cost benefit analysis. And so learning to apply that to sexuality can actually help you normalize the fantasy, I think. Yep. So true. Yeah.

Alright Ashley, what's your third tip for exploring your fantasies? I'm so glad you didn't steal it. My third tip is to watch your fantasy play out on screen. There are so many places you can go to find ethical porn and ethical erotic films that will help you see your fantasy come to life.

Seeing it can actually not only help you understand if this is something that's going to sexually excite you and give you pleasure, but it can also help you bring it to your partner in a way that you don't have to feel vulnerable. You can say, I found this

this porn that I think is really interesting. Will you watch it with me? If they get excited with you, you've already dropped that boundary with them. You've already opened up the door and talk about perhaps bringing it into the bedroom. And if it's Merverts, you can at least have a place where you can watch that, even though you can't do it in real life.

Yes, very true. My third tip was to go in with realistic expectations, right? Recognize that when it comes to exploring a fantasy, if you're going to try something in real life, that practice makes perfect. And I think that's also where this builds on your tip of kind of like seeing demonstrations of your fantasy, right? That can kind of give you an idea for what the script or setting or scene might look like.

But you want to go in with realistic expectations, not these sky high ideas of how it's going to turn out because disappointment is bound to set in if that's the case. Right. So recognize it's probably not going to go perfectly. There might be some things that are not optimal, but we can communicate with our partners about it afterwards, make some changes next time to make it better. Right. So I think that speaks really to the importance of having communication afterwards, engaging in some aftercare so that we can get it right the next time.

I love that. Don't give up. If your fantasy doesn't work out the first time, try, try again. Yes. Couldn't agree more. So thank you so much for sharing your tips, for exploring your fantasies with us, Ashley. That wraps up our top three segment presented by Field. A huge thank you to our friends over at Field for sponsoring this segment and helping us to expand our horizons in the dating world and on this show. We have much more ahead on today's episode, so stick around and we're going to jump in right after the break.

If you love the science of sex as much as I do, consider becoming a friend of the Kinsey Institute at Indiana University. The Kinsey Institute is the world's premier research organization on sex and relationships, and you can help them continue the legacy of Dr. Alfred Kinsey, whose pioneering research changed everything we think we know about sex.

Visit KinseyInstitute.org to make an impact. Your donations can help support ongoing research projects on critical topics. You can also show your support by following Kinsey Institute on Facebook, Twitter, and Instagram. Thank you for supporting sex science. Okay, Samina, let's talk about persistent genital arousal disorder. And I always like to start with definitions in case people aren't familiar with the term. So what is persistent genital arousal disorder?

It's in this class of what we call genital pelvic dysesthesia. So it's our abnormal pain sensation. So the pain that you feel is actually almost a feeling of arousal, but you're not thinking sexual thoughts. And

And so it can be a buzzing sensation. It can be like a strange sort of fullness down there. It can feel like bladder fullness. So many patients have described it in so many different ways. Usually we see patients that have suffered for at least six months, you know, suffered from these symptoms without any other reason for it. You're not. And the key is that you feel this feeling of genital arousal or general pain of some variety of abnormal pain, but you're not having thoughts of sex.

sex at all. And so the common thing is like, you know, patients are like, oh, I was driving with my kids and I was sitting in the car and I was just feeling all these vibratory feelings. And it is such a, such a distressing thing for patients that they have a really high suicide ideation from it. And my patients, they suffer for years on end thinking that they're going crazy or they will, you know, the thing because it deals with their genitals, they just sit with so much

shame related to it, you know? And so I think it's been amazing that we've been able to give it a term and we've been able to give it meaning because without that definition and meaning, it substantiates what they're going through.

Yeah, thanks for sharing that. You know, I think most people have probably had the experience before where they've experienced genital arousal in the absence of sexual excitement or desire, or otherwise they might have had arousal that was unwanted. But when does this cross the line into persistent genital arousal disorder?

For most patients, it's something that they experience like, you know, they'll have it all day, every day. And they may have triggers. Like I have patients that have had sort of lifelong PGAD that maybe started in like the prepubescent time. And then all of a sudden they'll have these triggers in their lives where it'll go on for months at a time. And then for whatever reason that they may not have figured out at that time, you know, there were times that it dissipated and then it came back again. There are certain patients, you know,

And we can talk, we'll talk about this, how we approach the treatment, which is really looking at the different regions that may be involved. And so it really depends on like if you've had a recent accident, if you are experiencing some severe anxiety or post-trauma, like there's so much that goes involved with it. And it's usually multifactorial. But I think it's this idea of this persistent feeling that's happening all the time, you

It's not going away. Things are not making it better or worse. You can't get comfortable. I mean, you have to imagine any other nerve pain you might have. You can think about like a funny bone that just, you know, when people think about these ridiculous pains or maybe when they get numbness or tingling in part of their arm when it goes to sleep. But that...

you know, doesn't go away or, you know, you can think about patients that have had amputations and they have this phantom leg syndrome or they have this persistent weird nerve pain. Nerve pain, I think, is so complicated and so distressing, but the additional layer of distress is

is around the feeling of your genitals, right? So I think, again, there's the shame involved. There's this like weird, like, oh, I feel like I should be masturbating and having an orgasm. And many of them do to try to relieve the pain. But most of the time it doesn't work. If it does, it works for like 10 minutes and that's it. So I think it's really, really a persistent thing. It happens for days, weeks, months at a time. It doesn't go away. They might have periods of relief, but it's happening every day for them.

Yeah. You know, I did an episode in the past on this topic where we talked about some of the effects of persistent genital arousal disorder on people's lives. And it does sound like it's typically this very highly distressing thing, as in it can make it very difficult for someone to even get through the day or to work effectively.

or to have a healthy sexual relationship. In some cases, these people will come to associate orgasm with just relief from pain as opposed to something that's pleasurable. So you can imagine how that could interfere with establishing a healthy sexual dynamic with a partner. And in severe cases, as you mentioned,

There can be suicidal ideation. I've also read some cases of people who have actually taken their own lives because this disorder was so distressing to them. So I was just wondering if you could tell us a little bit more about what it's like to live with persistent genital arousal disorder. I've heard stories, for example, of people who sometimes will have to masturbate eight or 10 times before they leave the house to go to work because that's the only way they can sort of

calm down the arousal for a temporary period of time. And so, yeah, it's different for everybody, I know. It's different for everybody. And I think that's what's interesting about PGAD is that no one of my patients has had the same sort of trajectory. And I think that speaks to the fact that this disorder is so nuanced and can involve so many different areas of your physiology and of your anatomy. I have a patient that recently I spoke to

who's a nurse and she's like busy on her feet all day and, you know, living with this arousal all the time, going to the bathroom back and forth. And sometimes it's a feeling of like bladder fullness. So going to the bathroom back and forth, you know, quickly masturbating, come back, you know, feeling just gross about herself because that's the only thing that can get her through the day. You know, other patients are just super, super,

anxious from the start, but because they have sort of like this baseline anxiety or OCD, obsessive compulsive disorder, and on top of that, have this feeling of abnormal pain sensation, arousal feeling, that they really get into a cycle of catastrophization where their worsening anxiety and worsening OCD feed into the PCAD, which feeds back into their... And so it's really this horrible loop of

of things happening. And the more anxious they get, the more they clench their pelvic floor, which then feeds into the arousal some more. And so, you know, you have those patients that suffer, you have patients that

you know, might have some like clitoral pathology. And sometimes it's, we put into the category of patients that have clitoral pain, which is an abnormal feeling at the clitoris. They feel just discomfort at the clitoris. It's buzzing all the time, or maybe it's just a little numb and tingly. And so because of, you know, that's the organ of pleasure when the clitoris is disrupted, it really can also just cause a lot of angst. My

My patients come, they're just so tearful. And so it's just life transformative. I wouldn't, this is one disorder I wouldn't wish on like my worst enemy. Like not that I wish things on my worst enemy, but you know, the expression, like, it's like, you don't, you would never want anyone to have to knowingly suffer through this because it's so much distress around it. And so people either learn to live with it or they find and seek help for it. But even when they learn to live with it, it's not like they're living good quality life.

They're just you can just imagine someone that has nerve pain forever. They just they have to adjust. And depression is very much linked with this. Right. So I think that, you know, you have this feeling that you're just not going to get better and this is just your life now. And and you just close up and you don't want to go out and you don't want to do the things that you want to do. I had a patient who was in her mid 40s who came to me because I had written about it.

And she said, when you described it the way you did, I realized everything that I'd suffered my whole life was what you described. And it brought me to tears knowing that there was a name for it. To name it was one of the things that was very much like so empowering for her because she's like this whole time, like when I was 11 years old, I used to masturbate in the corner because I had so much discomfort and my mom, you know, shamed me. And she told me that all these things

she said so many bad things about her that she started living with that shame forever. And she just thought she was a horrible person. And, you know, this affected her relationships. She had terrible relationships with her partners. She got into drugs. You know, she was just another patient of mine who had a totally different trajectory. You know, it's a horrible disorder. And I think that

I'm so glad that we have more information on it. And there's some of my most challenging patients, but there are also some that if you can get them to pass that point, they're the most grateful too, because they've been living with so much distress.

Yeah, I mean, all of this has to make me wonder how many people have been shamed for their masturbation when they have persistent genital arousal disorder. And instead, people might be assuming that they're addicted to masturbation or that they've got like out of control sexual behavior or something. It's like, no, there can actually be.

a physical disorder that might be causing them to turn to masturbation for symptom relief because they're having pain or irritation or something else and so you know that's another reason why it's important to talk about this and increase awareness of it because when you layer in this level of shame on top of having this persistent discomfort or pain like you can easily see how that could be super distressing for somebody

Absolutely. And I think statistically, you know, it's probably I mean, we probably don't have good data on it, right, because people aren't coming forward. But it's like one to three percent of people potentially. But I feel like for me, because I do treat it in my office and speak out about it, like I see at least one patient, a new patient a week with it, you know, so that's more than one percent.

Yeah. And in the studies I've seen, it's, you know, one to 3% is kind of roughly the range. But I wanted to ask, you know, is this disorder something that can potentially affect people of any sex? And is it more common in one sex? You know, do we know anything about that?

There's definitely been described in men's health as well, because I don't deal in that. I'm solely a sex medicine doctor that deals with female systemic oncologists. I don't deal with them, but I have heard the lectures on that. And I don't know the statistics specifically with men, but I know that there are patients that have suffered from this as well. Like, I don't know exactly their trajectory, but I'm sure it's just as difficult and they're just as shamed.

And it may even take them a little bit longer to come forward because I think for a lot of men, when it comes to their sexual concerns, they don't come forward as readily. Yeah, definitely true. And in the studies I've seen, and there's not a ton of data out there on this topic, it does suggest that it's more common in women, but it might just be that it's also underreported in men. And a lot of men who have it might not go and seek help for it, so it's not identified. So yeah, there's still a lot that we don't know on the topic.

And, you know, they're probably not getting asked the right questions either. I mean, I think that like my husband's an interventional pain doctor, so he manages a lot of patients with spine and we can talk about the regional approach to PCAD, but we know that's the spine and can be a source of the issues. And so because he treats some of my patients,

He started, has started asking a lot of his male patients with, you know, annular tears and lumbar disc issues and sacral issues. And so he finds a lot of them with, oh yeah, they do have some weird numbness in their testicles or, you know, they do find that like they get weird arousal symptoms, but, you know, they were trying to downplay it, you know? So I think it's just not as discussed because maybe some of their other symptoms are prominent or they're trying to like not think that that's a real thing. Yeah, definitely. Yeah.

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Now, I'm curious as to whether persistent genital arousal disorder is something that typically begins early in life or if it's something that can develop at later ages. So, in other words, is it lifelong and starts around the time of puberty or is there kind of like variable age of onset?

I think it's both. I mean, there are patients that I have that, you know, know that they had this when they were pre pubertal. And if we go back to how we kind of deal with the treatment and pain medicine, we talk about what's the pain generator. And since this is an abnormal pain sensation,

You know, you think about what pain generator brought this on. Thinking of that, there's been a process of care that was formulated by a lot of the major scholars at the International Society for the Study of Women's Sexual Health, ISHWISH, and it's a region-based approach to trying to figure it out. So obviously, if someone's had an injury of some type that has brought it on, it can be past pre-puberty.

If we think it's something that happens secondary to sexual trauma or something centrally acting in the brain, that's something I think that can happen throughout your lifespan. And so I think it's worth mentioning how we evaluate for it because we think there are multiple regions involved with potentially. And I would say at any given time, I'm treating two to three regions for my patients, particularly

So we talk about the end organ, which is region one. The end organ can be your clitoris. So your clitoral hood, which might have phimosis or adhesions that might have some like keratinized pearls causing irritation that might cause arousal. So that's one area that we look at. Like, is it the clitoris where it's coming from? Is it the vulvar vestibule, that little inner area of tissue between the labia minora and

And your hymen remnant extending to the urethra down to the perineum, that tissue that needs estrogen and testosterone, is that causing the problem because there's too many nerve endings or because of hormonal deficiencies? And as a result, you feel a weird feeling of arousal.

Is it a dermatologic skin condition like lichen sclerosis or something else that might be affecting your skin down there? And that as a result is affecting your basically your nerve endings, right? So we're thinking about all the things that are affecting the nerve endings of arousal. So that could be your clitoris, your vulva, you know, your labia, all the things that when the blood rushes down there, it gets engorged.

And so the nerve endings in region one, you know, and all that stuff are evaluated. And then we look at region two, which is your pelvic region. So that's your pelvic floor, the muscles down there. Every single one of my PEGAD patients have pelvic floor dysfunction because they've been clenching. They're being uncomfortable. They're sitting in certain ways. So they all get pelvic floor therapy. So that's really a critical part of the treatment.

Some people might have like peripheral nerve issues or the nerves that are kind of traversing into the pelvis, like the pudendal nerve. And so we always talk about the pudendal nerve, you know, the bikers that are sitting on that nerve causing issues or, you know, other patients that,

I've had an obstetric or gynecologic injury. So some of that, so I've seen a lot of patients with pudendal neuralgia from post-surgery, post-hysterectomy, post-obstetrics, the patients that are like pelotoning like crazy. I had a lot, I had this uptick in pudendal nerve issues after the pandemic because everyone was pelotoning. But I think that, you know, some of those symptoms come up as PGAD because the peripheral nerve is affected. So that's region two. And then region three and four have to do with your nerve roots that are feeding into the

pelvis. So that's like your lumbar and sacral nerves, as well as your cauda equina, the little nerve endings that kind of look like a horse's tail. And so all of those can get affected. So what we found actually, Dr. Goldstein, Erwin Goldstein and Chol Kim in San Diego, like did a lot, have done a lot of

work on how the spine is related because, you know, patients that all of a sudden get a disc that's disrupted or a tear in the annulus of the part of the spine that actually like where the roots, the nerve roots come out of. So the roots of all the nerves that feed into the pelvis are

You know, if there's something that happens at that level, you get disrupted, you got into an injury, you're a gymnast, you are an elite athlete who injured something. You know, these are the patients that might develop PGAD later because of an injury. And so just knowing that or like the cyst that developed in the spinal canal, what we call Tarlov cyst, that developed that compressed the nerve roots. You know, so that's been really a revolution.

remarkable discovery that they made. And this association has been really transformative for so many patients by fixing the issue in the spine, we can actually fix this PGAD symptoms. And then finally, the fifth region is your brain, right? So we know that all the initial signals are coming from the brain. So sometimes patients that

have quickly come off of antidepressants. You know, like all of a sudden they've come off them too quickly and, you know, maybe they have too much of a dopamine response or norepinephrine or something that's triggering it. And so I've had a lot of patients that have a history of anxiety that all of a sudden come off of meds too quickly and it triggers their PGAD. And so I think that's very important to remember that the brain is so centrally involved in

And that's how we treat some of it, too. We treat it by giving some neuropathic pain medication. All of these regions are so important. And so that's why PGAD can happen at any time. It can start when you're really young and you had a traumatic injury. Sometimes I'm trying to figure out, did you have a fall when you were young and that developed a cyst in your pelvis? Or, you know, what happened that may have brought this up? Of course, we know sexual trauma can bring it on.

and post-traumatic stress disorder, some of these additional things, OCD, obsessive compulsive, all of these are related. So I think it's very important to, again, the biopsychosocial is so important. So that's why all of my patients not only get pelvic floor therapy, they're treated by a sex med doctor, sometimes an interventional pain, sometimes a spine surgeon. And then, you know, we have to have a psychology involved too.

Yeah, thanks for the very thorough answer. There's a lot of interesting information in there. And, you know, for one thing, I'd be very curious to know if somebody has done a study looking at Peloton-related sexual dysfunction during the pandemic. I'm going to look at that, actually, because I'm telling you, it really was strange for me. I was like, wow, did you catch a Peloton? And they're like, yeah, I don't know. You know, we know the connection between biking and pudendal nerve issues. Yeah. Yeah.

Would definitely be interested to see a study on that. And also, you know, what you mentioned about coming off of antidepressants too quickly. So I've done an episode before on post-SSRI sexual dysfunction, and some of the most common issues people report with that are that they can't get around.

and they don't have any desire for sex. And so it's interesting to learn that persistent genital arousal disorder could also potentially be triggered by or could be a product of this post-SSRI sexual dysfunction. And, you know, maybe the types of dysfunction people experience could be related to how quickly they're coming off of their meds and, you know, maybe

coming off very fast can trigger this kind of oversensitivity or overstimulation versus tapering off might be related to other types of sexual difficulties. But, you know, that's another topic we don't know enough about and definitely need more information on because I'm increasingly hearing a lot more about people who are experiencing sexual problems after stopping using SSRIs.

Absolutely. And I think what's so interesting is like we just don't know enough about PGAT like because I think there's so many potential pain generators involved, like there's no one treatment for it. So I think that's why we're always trying to like try different things and patients that have had, you know, I had a patient who was in perimenopausal distress before.

anxiety. Her anxiety got worse. She came off of the meds and got switched into other meds. She developed PGAD and the anxiety got worse because of the PGAD. She gained weight because of perimenopause and the anxiety medications. We actually ended up trying to help her in so many ways. You know, she had multifaceted treatment of perimenopausal hormones. I put her on a GLP-1 because of this increase in her weight that led to obesity. And

And what's so interesting is she started slowly getting better and then she went on the GLP-1s and her PGAD went away. Interesting. I've talked to other sex med docs and we've all noticed some differences that happen with GLP-1s. So that's why my friend and colleague, Rachel Rubin, with one of the sexual medicine research teams is doing GLP-1s.

research on what's happening with GLP-1s in your sexual function. But I think that it's interesting because obviously we have receptors for GLP-1s in our brain as well. So what's happening with that? Is it affecting your dopaminergic response? It's fascinating.

Yeah, I might have to have you or Rachel back on the show sometime to talk about just the impact of GLP-1 drugs like Ozempic on people's sex lives, because I think there are so many implications of it that we don't yet fully understand in terms of how it can affect things like sexual function, but then also just sort of how does it affect dynamics in relationships? So for example, if one partner is on a GLP-1 drug and the other partner isn't, can you have...

resentment or stress or other issues that happen there. So I think, yeah, there's going to be some fascinating work to be done on the intersection of those drugs with sex and relationships.

Absolutely. I can give you the link to the study that they're doing right now to see because if any of the listeners are on them, it'd be interesting because we don't have the data and we want the data. So hopefully we can get the data. But I did speak to Dr. Alexandra Soar recently who wrote the book Ozembic Revolution. And I was talking to her specifically about sexual issues because I was trying to understand what her experience is. And she said the relationships do change dramatically for people because they're

you know, when you have this loss of food noise in your brain, like all of a sudden your brain is open to doing new things. So if you were going out with your husband every Friday night to drink and you're a foodie and you don't want to drink and you don't want to eat the food anymore, like your relationship dynamics change.

So people develop these new hobbies or, you know, other things. So I think that's really an important thing to remember that you might not go out with your six friends every Friday night to go like clubbing and drinking at bars all the time because you're not going to want to do that because it makes you feel sick or your drive to do that is gone. So it's pretty impressive. And I'm so curious to see what the results are going to show after this study.

Yeah, and the potential of these drugs to treat addictions and other things like that is so interesting too. So I'm curious if I have any listeners out there who have taken GLP-1 drugs and you've noticed impacts on your sex life or relationship, please reach out and let me know. I'm curious because I'd like to do an episode on it at some point. Yeah, and then let me know what they say too. So

So getting back to persistent genital arousal disorder. So, you know, it sounds like in terms of you describing the potential causes for it, you really do have to be a sex detective because there can be so many different potential things that are going on here. And I think that that's a big part of the reason why this is often so hard to treat.

So after my last episode on this topic, I had a couple of people reach out to me who have persistent general arousal disorder, who have said that, you know, I've tried everything and I've gone to the specialists and they haven't been able to figure out what it is. And, you know, I really feel for these individuals because they're motivated to seek help and they're pursuing all the avenues, but because it's an under-researched area and there are so many different things that can

cause it, that can really complicate treatment. And I think also many of them have experiences with going to their doctors and being dismissed because their doctor doesn't know anything about it in the first place because it's such a recently named disorder and probably wasn't covered anywhere in their medical education.

No, you're absolutely right. And I think, you know, obviously we have the ishwish.org directory, but even among that group, I don't know, you know, not everyone in ishwish is really comfortable treating PGF either because it's still, like I said, very new. I know Dr. Erwin Goldstein does like 15 minute phone consults to try to help patients navigate as well. There's some of us out there that really have gotten a better understanding of it that can try to help, but

Again, we don't know everything about it either. So that's the problem, right? Like I think it's an evolving field. And so it also sounds like, you know, there's a lot of different treatment approaches because it's going to depend first on, you know, what is causing it. And so, yeah, it might be very different from one person to the next. But in your own clinical experience, you know, how treatable has PGAD been for patients that you've seen?

I would say the majority, and again, it goes to where you think the pain generator came from. So if I have somebody that I think it's coming purely from the spine, treating the spine and the pelvic floor can be curative for them, right? So we've seen that for sure. I've had patients who I've seen who had severe clitoral phimosis and they had a lot of keratinized pearl underneath the hood of their clitoris.

And we did the procedure to lyse them and we gave them pelvic floor therapy as well. And that cured them. The same with vestibulectomies for patients that had nerve proliferation at the vulvar vestibule. And we realized that the majority of their arousal symptoms were in that area.

They had sexual pain as well. Removed the vestibule, given pelvic floor therapy, and it was cured. Every one of my patients, though, have needed pelvic floor therapy as well as, to be honest, sex therapy or some sort of cognitive behavioral therapy because this is a fairly traumatic condition.

And then on top of that, you get trauma by the medical system, you know, because you're so dismissed. And, you know, I've had patients that provide your clinicians have been like, well, just enjoy it. You know, you're orgasming all the time. What's the big deal? Not to understand, like how much distress and, you know, like just, you know, enraging that is to hear, honestly, that, you know, you're telling someone just to try to enjoy it when it's.

Like, do you enjoy getting your funny bone like hit up against for extensive periods of time? It's an unfortunate part of this whole thing. And so I think finding the right clinician can help, but we also just need a lot more answers. Yeah, we definitely need a lot more answers.

And I would say even among the pelvic floor therapists, because there are certain techniques that certain therapists use to kind of alleviate some of the tension. So, you know, there's sometimes even trying to find the right pelvic floor therapist that knows how to treat it is it can be challenging sometimes.

even looking for that. My friend and colleague in California, April Patterson, she's a specialist in physical therapy for PGAD. So she's always, you know, been willing to help guide other PTs in that as well. So if anyone hasn't gotten the PT they need.

So we're running short on time, but I have one last question for you, which is whether there's anything else that you think is important for us to know about persistent genital arousal disorder or what people who might have this disorder need to know that they don't currently know. You know, I think it's important to know that not to lose hope, that there's not a quick fix for it. And there's not going to be a time where like you're better within like, you know, a month or two, especially if you've been dealing with it for a prolonged period of some times. But we do have a lot of tools in our toolbox that

You do kind of have to have like one sort of because it is a multidisciplinary approach. And so I feel like you do have to have one person that kind of leads the team, so to speak, like your quarterback that's going to help you navigate, you know, the plays to get you to feel better. But I do think there's tremendous amount of hope for these patients that there are things that can be done and things that were current.

learning and understanding. I just don't want the patients to feel like there's absolutely no hope and that this is something that I just can never get over because I've seen tremendous success. And sometimes it's taken a couple of years. Sometimes it's taken 18 months. Sometimes it's taken a few months, but my patients do get at least relief of symptoms or even toned down symptoms.

Yeah. And I have to imagine that for people who do get relief from this, that it has to be life-changing for them to go from this constant state of unwanted, uncomfortable, unpleasant arousal to not having those feelings anymore.

Yes, absolutely. So, and I know that there's like a lot of PGAD support groups and I think they're wonderful. Some of my patients tell me sometimes if they're in the heat of a, you know, because a lot of people can understand what spikes them and what triggers certain worsening symptoms. And so once they have an understanding of that, they tend to try to avoid some of those things. But I do have patients that tell me sometimes that being in these support groups is very helpful.

Well, thank you so much for this amazing conversation, Samina. It was a pleasure to have you here. Can you please tell my listeners where they can go to learn more about you and your work?

I have my own private practice in Chicago. So I'm where I just do sex med and menopause management. But if you go to Instagram, I'm gyno girl on Instagram. I also have my own podcast. Gyno girl presents sex, drugs and hormones. I have a YouTube channel that I'm trying to foster called gyno girl TV. You can find me at any of those locations. And I'm always happy to help and try to educate more.

Well, great. And I will be sure to include links to all of that in the show notes. So thank you again so much for your time. I really appreciate having you here. Thanks, Justin. Appreciate you. Thank you for listening. To keep up with new episodes of this podcast, visit my website, sexandpsychology at sexandpsychology.com or subscribe on your favorite platform where I hope you'll take a moment to rate and review the show. If you listen on Apple podcasts, please consider becoming a sex and psychology premium subscriber to enjoy ad-free listening for just $3.99 a month.

You can also follow me on social media for daily sex research updates. I'm on Blue Sky and X at Justin Laymiller and Instagram at Justin J. Laymiller. Also, be sure to check out my book, Tell Me What You Want. Thanks again for listening. Until next time.