It is an incredible pleasure to have Stephanie Prendergast on to discuss and explore pudendal neuralgia—a condition fraught with pain, misdiagnosis, and, too often, misunderstanding within the medical community.

We dove deep into pudendal neuralgia, a complex condition that affects so many lives but remains poorly understood in the medical community. 

I cannot stress enough the importance of recognizing the signs and seeking appropriate care for this type of pain. 

We also explored why a region-based diagnostic approach is crucial for genital pelvic pain disorders. 

Stephanie's profound insights on pelvic pain and the multi-faceted causes behind it. Stephanie and I will tackle the current diagnostic criteria's limitations, the pressing need for a better grasp on treatments, and the vital role of a multidisciplinary approach in managing genital pelvic pain disorders. 

As we discuss pudendal neuralgia's insidious nature, you'll learn about its varied symptoms, the importance of the Nantes criteria for proper diagnosis, and why a simple nerve block isn't always the answer. 

We hear about the trials of pelvic floor therapy and how hope can be found in region-based methods and coordinated medical teamwork.

Remember that health is a collaborative journey, and it's vital to have a coordinated team of professionals for treatment. 

Make sure to like, subscribe, and write a review if our conversation moves you—your support helps us keep bringing these vital topics to light.

Highlights-

What is Pudendal Neuralgia? Discussion on diagnostic criteria limitations for pudendal neuralgia. Addressing the medical field's lack of understanding and awareness of clitoral and pelvic pain.Advocating for a region-based diagnostic approach

Treating Pelvic Pain and Pudendal Neuralgia. Multi-faceted causes of pelvic pain. Region-based approaches for treatment. Guidance on pelvic floor therapy techniques for pudendal neuralgia. Importance of multidisciplinary collaboration in treatment

Pelvic Floor Physical Therapy and Its Importance.The biomechanical approach to pelvic floor therapy. Differentiating between various pelvic pain conditions. Strategies for restoring nerve mobility and using manual therapy. Advocacy for Patients and Clinician Responsibility.Issues of gaslighting and psychological dismissal in sexual pain. The need for clinical transparency and proper referrals.

Educational Aspects and Audience Engagement. The importance of self-advocacy in health issues. Encouragement to follow, like, and review the podcast. Direction to website and social media for additional resources. Promotion of the podcast's YouTube channel and newsletter

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Hey, y'all, it's doctor Samina Rahman, Gyno girl. I'm a board certified gynecologist, a clinical assistant professor of Ob GYN at Northwestern Feinberg School of Medicine, and owner of a private practice for almost a decade that specializes in menopause and sexual medicine. I'm a south asian american muslim woman who is here to empower, educate, and help you advocate for health issues that have been stigmatized, shamed, and perhaps even prevented you from living your best life. I'm better than your best girlfriend and more open than most of your doctors. I'm here to educate so you can advocate. Welcome to Gyno girl presents sex, drugs and hormones.

Let's go. Hey, y'all, it's me, doctor Samina Rahman, Gyno girl. Excited about the podcast I just recorded with Stephanie Prendergast. She's a physical therapist that's been in practice for over 20 years with amazing, amazing experience, insight and wisdom into pudendal nerve neuralgia. Pudendal nerve is a peripheral nerve involved in your innervation of the genitals, your clitoris or penis, external organs, as well as the muscles in the pelvis. And when people injure that nerve, either through mechanical stress, obstetric injuries from delivering childbirth, maybe a gynecologic surgery injury, possibly even biking or pelotoning, you know, you can get some significant burning sensation and pain. And we're going to talk about that, and we're going to talk about how sexual issues in our podcast today. So please stay tuned.

It's going to be wonderful. She is amazing and full of a lot of, lot of great wisdom. So I can't wait for you to hear what she has to say. And you can read in the show notes how to get in touch with her or, you know, read her book or follow her blogs, because again, great education there. So please stay tuned for my podcast with Stephanie Prendergast talking about dendoneuralgia. I'm here to educate so you could advocate. So here comes another episode of Gyno Girl presents, sex, drugs and hormones. Hey, y'all, it's me, doctor Samir Gyno girl.

Here for another fabulous episode on my podcast, my colleague and friend that's here today, Stephanie Prendergast. She is one of the OG original pelvic floor therapists that have been doing this for such a long time with such an amazing job expanding her knowledge and services throughout the world. Actually, she opened her first practice called Pelvic Health and Rehab center in 2006. And since then, she and Liz Akanjalar have grown this organization, pelvic Health and rehab center extensively. They have eleven locations. So wonderful. Berkeley, San Francisco, Walnut Creek, Los Gatos, West La, Westlake Village and Encinitas, Pasadena, even in the Midwest. Columbus, Ohio Lexington, Massachusetts and Merrimack, New Hampshire.

Tiffany is an amazing educator, too. She is a fellow for the International Society for the Study of Women's Sexual Health. She and I met at Ishwish. I talk about Ishwish a lot on this podcast because it's an amazing organization. I get to meet such cool people. So we met a few years back and, you know, she's been on my speed dial ever since. So I always talk about like, you know, as gynecologists who treat sexual pain, we should have a pelvic floor therapist on speed dial. And I have quite a number a of them.

I have my own therapist in my office too, but bit Stephanie's always on speed dial for me when I have an urgent issue. And she's also a co author of a book, Pelvic Pain explained another way. She educates, and she's on Instagram, and she's on YouTube and TikTok and Facebook and Pinterest and has done amazing work. She's also had been the president of the International Pelvic Pain Society and does a lot of work with advocacy for pelvic floor dysfunction. Working with a lot of pelvic floor therapists. I send a lot of therapists to her to learn from her, too. So, anyway, you can read all her amazing accolades on the show notes, but she's an amazing individual and I'm so excited to have her here today. Hey, Stephanie.

Hello. Thank you for having me.

Of course. And so you're in LA right now?

I'm currently seeing patients in LA.

That's great.

Correct?

Yeah. Yeah. So obviously you opened up your first practice in 2006, so you've been doing this for quite a while. And pelvic floor PT has really been booming, I would say, in the last ten years. Like, people are really starting to understand the importance of pelvic floor therapy and understand, you know, how it can be utilized in so many different dimensions, so many different disorders. We're going to focus on a couple of reasons that women get sexual pain and how you treat it. But tell me, like, just for people that have never done pelvic floor therapy or heard about it, tell us a little bit about, like, just job description, I guess, or what you do with your patients when you actually see them, because I know a lot of patients I'll send initially, and they're like, freaked out, like, what's going to happen? What did you get? And I'm like, no, no, listen, it's not as bad as it sounds.

Well, and thank you for that, because what, the words matter when someone's getting to refer to pelvic floor physical therapy specifically because nobody thinks to, to go see a physical therapist if they're having irritated bladder symptoms or painful sex. They're not like, oh, let me go check in with my local PT about these things. So I think what's been the most interesting throughout these years is, like, really understanding that most people, the pelvis is just not part of their biologic knowledge of themselves. And so it's understandable that people are nervous and confused because they don't realize we have muscles that run from our pubic bone to our tailbone and really are probably as vital as our heart and brain for urinary bowel, sexual pleasure, reproductive situations, and supporting our core. So physical therapists, as a group, we analyze movement, neuromuscular patterns, we treat pain, we do rehab, and that's the same thing that happens with the pelvic floor, but it's not taught in schools, just like your advanced training to do sexual medicine wasn't taught to you. And so it's become a specialty that really has grown, as you've said. And I've actually been practicing in pelvic health for 23 years. I really am OG.

And to see these changes that happen, like, on a decade basis has been fantastic. I just think everyone's overall well being is better for it. And even though I don't like being the age I am, it's been fun to watch.

I totally agree with you. And even just myself, having been open for the last ten years doing just sex, men and menopause, it's been impressive at how much has evolved and how many people are really, like, realizing, like, I didn't get this training, I need to get in there. Like, ish wish has grown as an organization, has it not? Like maybe it was a couple hundred when we started, probably, but it's like, I think upwards of a thousand members now.

And I'm so glad you are mentioning them because I think I owe a lot of our clinical success to that society and to the knowledge that I've gotten from the different providers and the leadership. So I'm not surprised that's growing too, because I think they do an excellent job with their journal programming, making sure the junior staff can get educated. And it really changed it changed my clinical practice, and I think we're going to dive into that when we talk about these different diagnoses. But it's an impactful society.

Absolutely. And I think that's one of their goals, is to educate multidisciplinary people, like, not just the urologists, the gynecologist, the primary care. It's like the pelvic floor pt. There's sex therapists that come. There's, you know, psychologists, psychiatrists, like, just, you know, it is truly multidisciplinary and it really. They do really include, you know, everybody. So I think, like, when you find your home. I was writing that in a post just, I found my home with ishwash, but it's so true.

I agree. I agree.

Well, let's get into some information here. So I want to talk about the. The pudendal nerve and pudendal neuralgia. We talk in a couple of my other episodes about people when they have spinal issues and how it relates to their sexual dysfunction or genital pelvic dishes. I had April on and we talked about persistent genital arousal, and she talked about her annular terror in her spine and how that nobody really correlated the two. And I think when we talk about nerves and muscles, sometimes it just doesn't click. Number one, sexual pain is not normal. It might be common, but it's not normal.

Like, we shouldn't just suck it up and take it. So I think that's something we should just stay upfront. And there's different reasons that people have sexual pain. And you're working on a great presentation for Ishwash right now about sort of like the mapping and everything, right, with different types of sexual pain and how you treat it as a pelvic floor therapist. And I think what. And I think one of the issues we want to talk about is the pudendal nerve and pudendal neuralgia and how that can manifest as either through genital pelvic pain, sexual pain. We know it can also manifest in persistent genital arousal, which we did in episode or two episodes on already. So tell us about what the heck is this pudendal nerve and why does it cause so much trouble?

It is. It is kind of a big deal to go over the anatomy briefly. The pudendal nerve has a major sensory distribution in. If we're talking about vulva, vagina, clitoris, part of the vulva, the perineum, the anal skin, but it also is responsible for innervation to the majority of the pelvic floor muscles, part of the urethral sphincter, the anal sphincter. And it has autonomic fibers in it, which means that because the pelvic floor muscles are always under autonomic control, meaning we don't have to think about it. We have the ability to override the pelvic floor muscles. For example, if we need to urinate or have a bowel movement, we can control our muscles, but we don't have to think about or do anything. For example, if the urine is coming into the bladder and making the pelvic floor muscles contract, that's part of the autonomic features.

So the pudendal nerve is special in that it's, like working all the time. When dysfunction arises with the pudendal nerve, it is called pudendal neuralgia, which basically means nothing like the other diagnoses except for pain, in the sense it's a symptom descripture. It does not tell us why. But what I think is the most interesting about pudendal neuralgia is it's more mechanical than some of the other sexual pain disorders. The anatomy is such that the pudendal nerve comes out of the sacrum, and it travels through a muscle called the obturator internus that we use all the time. And that is not. It is part of the pelvic floor muscles, but it's not innervated by the pudendal nerve.

It just holds it.

And so in certain people, it's vulnerable to mechanical strain. In other people that have obstetric injuries and faulty mesh, situations that we know have gone on the past years, there could be an entrapment situation. But when we have to look at the origin of pudendal neuralgia, it was initially defined in 1998 or 1988 as cyclist syndrome, a compression injury that was called. Everything was called entrapment. There was no acknowledgement until recent that the nerve can have inflammation or irritation and not be entrapment. So there's a lot of diagnostic confusion around this, and also the mechanical considerations are significant. But when the word was defined by a neurosurgeon, you can understand how the mechanics got missed, right?

Oh, yeah, that's really good point.

I can. When you look at the history, I really see. I see how this happened because similar to what we were saying about people contacting a physical therapist for bladder and dyspareunia, no one thought, oh, my penis and vagina is burning. Let me go talk to a PT. Let me go to a neurosurgeon. So I really see historically how this happened, but I think that now there's been a lot of change in the diagnosis, and I need to go back a bit, because between 2001 and 2006, there weren't yet pudendal surgeons in the United States. And I worked in one of the only interdisciplinary centers in the entire United States that had non surgical inquisitiveness and treatment for pudendal neuralgia. So I was in an interdisciplinary setting.

I was working with a urologist who was not dealing with the surgical side at that point in time. Again remembering that it all used to be entrapment, patients were all flying to France to get surgery, and that was it. Bed rest for six months. They cut the sacrotuber, sacred spinous ligament, and people were on opiates, and physical therapy was not a factor. But I quickly learned that this is a mechanical diagnosis, and we had to figure out what happens with the lumbopelvic hip complex to make some people have neuralgia without entrapment. And as that has evolved over time, we really see that it is a musculoskeletal issue that deals with the pelvic floor, the hip, the spine mechanics in a whole subset of patients, that gives a therapeutic opportunity for that to be actually treated successfully. But because that nerve is such an overworker and an overachiever, it doesn't respond the same way people think they should respond to healing and rehabilitation. And I think that causes a lot of anxiety and stress confusion amongst medical providers about how to best manage it.

A nerve block is temporary. We've got to really correct the underlying mechanical dysfunction, and then what we see is a reduction in these burning, shooting, stabbing pains that can occur in the sensory distribution.

No, that's really good, actually. I mean, I really love that you said that, because a lot of people will say, oh, wow, I'm getting these injections. So a lot of us in sexual medicine have kind of learned different routes to do pudendal nerve block. And so you can block it, and some people block it sort of vaginally. Like, they get in there. Like, how we learn in obstetric land when they used to only give these, like, blocks where you actually do it vaginally versus, like, through the vestibule or actually approaching it from behind. Right. And so.

And I guess, you know, maybe the extent of understanding, you know, which route is best may be, like, where the compromises occur, you know, if you could figure out the reason it happened, right? Was it, did you have an injury when you were delivering your baby? Did you have an injury when you had your hysterectomy? Did you have an injury when you know, you're a peloton. Like, didn't you find this huge rise in, like, pudendal neuralgia? With. With. Wait. Probably because everyone was doing COVID, like, hitting up against the freaking, you know, seat so hard. Yes.

And some people's anatomy is not. And that's why some people are like, why did I get this? And someone else didn't? And it's all anatomy. I mean, some people's anatomy is not set up to sit on a peloton seat, and some people can, and you don't know the difference until something bad happens. In terms of the symptoms. I totally agree. And you know the routes with the nerve blocks, I think this is all important, too, because, I mean, the nerve block, it's a good point. I mean, we're separating the way that I approach it because I attract pudendal neuralgia. It's been a significant clinical interest of mine, obviously, since my early career, which I had no idea how exceptional that was.

But what I would say is there are insidious developments of the neuralgias, where it may start as, like, some itching or a little burning, like there's nothing that really happened, versus, again, some of the. You wake up after a surgical procedure and all of a sudden it's there. Or obstetric injury is a different category. The insidious development is actually what's interesting, because that is a mechanical fault somewhere. And historically, people would do pudendal nerve blocks, and they're disappointing for a lot of patients. The average time to diagnosis is about five years. Thankfully, that's one of the things that are changing. And if you've had five years of symptoms, I don't know if a steroid or a lidocaine injection is going to be therapeutic.

But what a shift has been in our practice is instead of doing a nerve block, if we see, I'd say, about three visits in the obturator internus is hot. It's on fire. Our colleagues can do pelvic floor well, can do botox, specifically into the obturator internus, because the pudendal nerve runs through that muscle. If you can get a bulky, tight muscle to relax with a chemical versus a physical therapy thing, it may give that nerve more room to slide, glide and move normally. And if then, after that, the nerve pain doesn't calm down, a block may be therapeutic, mostly if it's been under a year, if it's been more than a year, I'm not sure it's worth it for a patient to go through a nerve block, because it's not like an inflammatory situation where you broke your ankle on the side of a basketball court and someone's going to shoot you with a steroid. It's going to be fine. This is more of a neuropathic, neuromuscular pen condition we found with the botox injections into the obturators. That's been more helpful to advance and then allow the patients to go through the rehabilitative process where we can figure out where in their lower kinetic chain.

Why is our obturator so active and then work on everything around the tissues? And again, the whole goal of physical therapy, which goes back to your original question, is to help that nerve slide, glide, and move normally. So sitting isn't a problem. Walking up a hill isn't a problem. Some people still can't sit on a bike seat. I'm going to make the argument. I mean, again, if they're nerve. I think I'm one of them. I'm so afraid of a bike.

Like, if we're just. I'm like, I'll just do trx hanging.

Off a bedroom door.

But some people just can't sit on a bike seat.

Well, let's talk specifically about, like, for the patients who are listening or potential, you know, patients out there. What symptoms do you see with pudendal neuralgia? Because they can be very. They can vary depending on, you know, where the damage is. Right.

If you look at the four mechanisms of insidious neuralgia, it can be constipation, like it's a tension injury. Every time someone's straining on the nerve, there are compression issues that can come from the bike, sitting, horseback riding, and then some of the other diagnoses that we're going to talk about can also start to sensitize the pudendal nerve that if they have a mechanical disruption now, they're kind of set up to have an incomplex of some of the other issues that are defined as vulvodynia or IC.

Yeah.

So when we look historically, again, about how that diagnosis has become a thing, the nont criteria, which was published in 2008, is still the gold standard. And the classic thing is burning. And as you and I know well, too well, there's other things that cause burning. But it's usually, I call true pudendal neuralgia. It's usually a unilateral, burning, stabbing, shooting, itching pain in the territory of the pudendal nerve and the sensory distribution. But as we know, that's, like, what we have to differentially diagnose, because other things burn, too. And it doesn't mean it's pudendal neuralgia, but their other hallmark is pain with sitting. And the most important question we can ask is, where is the pain with sitting? Because if it's in your posterior thigh, if it's in your super pubic region, if it is lateral to the labia in women or the scrotum in men, that may not be pudenal neuralgia, but because it hurts when they sit.

And that's the most defined criteria. I think a lot of people self diagnose themselves with pudendal neuralgia. They're very scared about what they read online, and it may not be pudendal. And I feel like that's. I'm almost saying more than I'm not. This is not pudendal neuralgia. So please be assured.

Right. Because I think that that's what's happened is because pudendal neuralgia has kind of gotten a little more in either in media or social media or where patients write about their stories that everyone who has, you know, pain when they sit or, you know, burning down there, we don't know what down there is for people, quote unquote down there. If it's in the labia and the clitoris, you know. Yes, maybe that could be clotilde neuralgia. Right. But if it's down there is right in the inner thigh or, you know, some other area, it's not. Right. It's another nerve, potentially.

So I think that it's really important to even denote that. And it's n a n t e S. Nantes. What is it? Nonce criteria. Non. Yep.

N a n t e s. Yes. The nont criteria.

Yeah. Not criteria. And that's by the french doctor who was treating it for the longest time. Right? Yeah.

Professor Robert. So we've spent some hours arguing over what this diagnosis is. I've been to non. Yes. And it's interesting because I think the biggest sticking point for me is a diagnostic block, because they used to use pudendal blocks before the epidural was involved in labor and delivery. So it's hard to say. Like, if somebody has lichen sclerosis and they burn, they could have symptoms and meet the diagnostic or the clinical criteria for pudendal neuralgia. They burn in their labia.

That does not mean that they have pudendal nerve entrapment. And so if you do a block and that pain goes away, all it.

Means to me is you did a good block.

So I need everybody to stop saying that, because there's all these other things, if you have herpes, if you sat on a pinprick, I mean, there's a million things that can make you burn.

And so we can't say it's diagnostic.

And that's always been my sticking point. And we have to agree to disagree on this, because this has been an ongoing situation for me.

I totally agree with you on that, too, because I've seen it myself, where it's like, okay, yeah, someone got a block and came to me, and they're like, oh, predental neuralgia. Treat her with some botox. Or I get referred from different people, and I'm like, yeah, but she also, you're right. Has the ligand sclerosis or something else, and I'm just like, oh, the clitoral pain is from clitoral adhesions.

You know, exactly this other thing. That's a very important differential diagnosis as well, because when neurosurgeons are examining patients and they have unrelenting clitoral pain, I've seen it several times. This is a case study I'm going to be using in my talk. I have a patient who had bilateral pudendal nerve decompression for severe clitoral pain with urination and bowel movement, and that did not go away with the pudendal nerve decompression, which happened in Switzerland. And then she came to me.

Oh, wow.

And she had clitoral, and that's a major surgery. And Rachel Rubin actually took care of that, and now that's gone. But she went through a bilateral pudendal nerve decompression at the age of 30, and it was clitoral thimosis.

Oh, wow.

Yes.

That's so disappointing. Yeah. But, you know, we have to know that there. And so I think that goes to a good point. What, if any medical providers are listening or clinicians? That's what you learn, right? Pudendal neuralgia, if it doesn't get better with the block, it's not pudendal neuralgia. Or if it does get better, it is. And so I think you're right. That criteria should no longer.

I mean, that diagnostic criteria should not exist, that we should not or exist.

I agree, and I think, you know what? We're going to be the people to do that.

Well, this is what we like. We changed the name general urinary syndrome. Menopause got changed because vaginal atrophy wasn't sufficient. You know, used to be that when women went through menopause, we'd call it vaginal atrophy. So women were told, hey, your vagina is atrophic, it's decompressed, it's becoming non useful. But we know there's a whole syndrome of what happens with the urination and everything else. So I think you're right. We have to.

That's why we say words matter so much when it comes to these diagnoses.

And to try to shed light. I mean, I think the first paper on clitoral adhesions was only published two years ago. And so I understand why this isn't common knowledge, but you cannot misinterpret. How does the dorsal branch of the clitoral nerve even get involved in a 30 year old who has no pathology? I mean, in order for the clitoral branch to get involved, to cause that much pain. But nobody even bothered to retract the hood. And she saw over 35 doctors in Europe. This is what blows my mind.

Oh, wow.

Is that paper is so simple and anyone can do it in their office as an exam, but it's just not standard of care anywhere.

Right?

So I see again how it happened, but it shouldn't happen moving forward.

Absolutely. I'm going to age myself here. But when I went to medical school 20 years ago, they told us not to look at a woman. Don't touch a woman's clitoris. It's very sensitive. Like, who would get told not to touch a man's penis? If you have penile pain or whatever, you're going to assess what's happening. But if someone, you know, so interesting. Yeah, that's important.

And again, you just try to understand how this became what it is.

Yeah, so it's. Yeah, it's very interesting that happened. Well, that's it. That's a good case, actually. And unfortunately, that poor patient had to suffer for a long time before she got what she needed. But I think it was 1976 or something, was when literature started saying that the clitoris had 8000 nerve endings. And last year, and that was from Macau. So, like, women are not cows, we're not small men.

Like, you got to do research on us to figure us out, which, you know, 1993 was the first time we were encouraged to be in clinical research, which is not that long ago. Well, last year was the first year they actually found out that the human clitoris has more than 10,000 hermenes, which still blows my mind that for 48 years or whatever, we were using data from a cow. Isn't it.

Isn't it astounding? And then you start to talk about the research of the nineties and I'm like, and that was a poo poo platter, because then you put everyone into menopause fear in 2002, and, like, we're still trying to recover.

We're still trying to recover from that.

So good job. You start studying women, and then all of a sudden, you terrify everyone in menopause, and now 52 million people are probably suffering.

Absolutely. This is a problem with our system, which we're changing.

We're working on it. We're working on it.

Well, I think that's great to hear and understand a little bit about the pudendal nerve. And again, also, we also know, because we've talked about the spine a couple times on this podcast, that the pudendal nerve originates from the second, third, and fourth s two, s, three, s, four in the sacrum. So that's where the nerve originates. So sometimes it's not even the peripheral nerve. Right. It's the origin. It's something happening at the level of the disc. It's something happening at the level of the spine.

So I think we always have to keep that in mind. But there are treatment options.

Yes. And the region based assessment that we are embodying with ish wish is it isn't always the pudendal nerve or the mechanics I just mentioned. It can be a tartil off cyst, it can be spinal, it can be neuropathic pain from a long time. So there's a lot of different ways that we can tease out what is causing our patients.

Right. And I think in one of the previous episodes, I talked about how we do when it comes to genital pelvic pain or persistent genital arousal disorder, they're all the same spectrum. We do a region based approach, which end organ, pelvic floor, caudal, quina, the lumbar, sacral, and the brain all involved.

Yep. And I think that is bringing hope to a lot of people. It makes so much sense to me.

Yeah, absolutely. So, just in summary, for the pudendal neuralgia issues, we talked about some of the symptoms, but what are some of the treatment protocols? So you said, obviously, what you're doing in pelvic floor therapy. Do you do certain techniques for pelvic floor therapists that are listening that are not sure how to treat pudendal neuralgia? Are there certain things when we see.

Patients that are coming from other practices where they think they didn't progress enough or they just didn't get better? Pelvic floor physical therapy can't just be pelvic floor physical therapy. When it comes to pudendal neuralgia, it has to, to be a biomechanical approach that is like orthopedic and pelvic floor. And again, I don't know how our field got so separate with these two things, but that is very different than vulvodynia and interstitial cystitis if it's a mechanically based nerve that is causing inflammation. And so we can't just do manual therapy to the pelvic floor. There needs to be a pelvic girdle assessment and techniques that can help with restoring whatever the patient's impairment is. And that can vary beyond the scope of what we can talk about right now. But the other thing is that nerve does not slide, glide, and move normally. So hip flexion, walking up a hill, external rotation, clamshell activities.

There are certain do not dos with pudendal neuralgia until you help restore normal mobility of the nerve. And I think that the junior therapist may not quite understand that yet. And if you're just going in and stretching the pelvic floor, that's not going to be sufficient. There's connective tissue changes in the bony pelvis. There's obturator internus changes inside the pelvis and outside the pelvis that need to be targeted. And that can be done in the clinic and with home exercises, which I think we have a whole segment on our YouTube about that, because that obturator internus makes a 90 degree angle around your sit bone.

Yeah.

And that means every time you flex, it's going to be a problem. Every time you extend, it's going to feel more comfortable. But unfortunately, we don't walk around with our leg behind our body. That's just not how we function. And so, I mean, temporary lifestyle modifications combined with manual therapy and therapeutic exercise, neuromuscular reeducation is really what can help these patients get back to a pain free state.

Oh, that's wonderful. And then you mentioned that working with other clinicians, I, you guys have been so important that the Botox is really important, or it can be very, even more important than potentially a block. Right? Yes.

Especially if it's irritating to go through pelvic floor pt, because I just said all these other things we have to do to help a patient normalize their bodies. I'm a big fan of Botox, and I also think if there's unrelenting, unprovoked neuropathic pain, I'm a fan of the pharmacological options. Such as? As, you know, the three classes of drugs that are appropriate for pain, the tricyclics, neuromodulators, snris. I really think it is important. And sometimes patients aren't being instructed about what to expect with these. And if this has been going on for a long time, more than two years, I think drugs can be very helpful, too, but they need to understand it's not like you're going to take a pill, it's going to go away. It's just helping you heal. And I don't see that being, like, patient.

I just don't think patients are understanding that because the doctors don't have enough time sometimes.

And I think that's a really critical point, is that, you know, most of the patients that we see rarely come to us within three months of a pain issue. Right. Like, it's usually, we're the fifth, 6th, 7th clinician that they've tried to see, you know, whether it's pelvic floor, whether it's a gynecologist or urologist or sex therapy, whatever the case may be. And so, you know, unfortunately, there's gaslighting in the medical profession. We know that, like, you know, patients get told that everything is in their head. I just want to tell a side story. I recently went to a pharmaceutical top on Nextelis, which is, like, the new birth control pill that is supposed to be pretty helpful in, like, perimenopause, but it's a unique birth control pill. And I was talking about.

They were speaking about how, you know, maybe there's less increase in the SHGB, the sex hormone binding globulin, and, you know, all this stuff. So I was talking to this very seasoned clinician, and I was like, I wonder if it has a different impact on sexual pain when it comes to these patients. As. As we know, the vestibule, the opening of the vagina, has estrogen and testosterone receptors and is decreasing it with the birth control pills, that up to 15% of women have that pain at insertion sex because of birth control pills. And so he kind of was like, well, I don't know about all that. I would just make sure they were getting psychologic treatment.

And I was like, oh, again, back to 1800?

Yeah, it's in your head. Like. And, like, I really. And I was like, oh, does he not know the correlation between birth control pills and sexual pain? That's what struck me, actually. I was like, oh, wow.

And taking me back to ish wish. I mean, this is not. We're not just viewing this about the estrogen and testosterone receptors. This is a physiology, and it's very important what you're saying. A seasoned practitioner did not even know.

That he was like, oh, I'd make sure that they got psychological assessment. And I was like, no, no. But this is a real pathology that 15% of women have, especially when they started in their teen years. You know, birth control pills is what we're speaking of. And there is a whole New York Times article about it last week on the pill and how the birth control pill and how it affects sexual pain and libido. My point to all this, really, in that convoluted explanation, is that there are seasoned clinicians who still believe that when a patient comes to them with sexual pain, that it is in their head, and then that's what they tell them, and it's shocking, right? We hear it all the time, oh, have a glass of wine. Oh, you know, relax. Have more sex.

It'll get better. Not okay.

It's not okay. And one of the hardest parts about my job is no physician wants to hear from a lowly physical therapist that they are absolutely, completely wrong and don't even know how to assess the vulva. Yeah, it's really one of the things.

That makes me frustrated.

Cause we are gifted to be around experts and know what the teamwork is like, but yet we see this happen when people coming in the door with, like, tears running down their face. Cause they think it's gonna happen again in here. And then when we actually tell them about their anatomy, more tears and frustration.

And the only reason these people need.

Psychological care is because of doctors like that.

Absolutely no effect.

No. And physical therapists, too.

100% and 100% any clinician, I think, across the board. Right. The bias exists. And because of their own lack of knowledge or keeping up to date, they sort of.

I just wish people would say they didn't know. Instead of, you need to do something else. There's another impairment you have, and it's not this. Just say you don't know.

But I mean, exactly. I say it all. I'm like, well, I actually don't know. Like, you'll have to. Probably. Maybe we can talk to, like, a, you know, reproductive special. You know, some of these things. I'm just like, oh, I'm actually not sure why you're on all that medication anyway, but I think it's important to know.

I've said this in a couple of podcasts, that sexual pain is not okay and it's not normal, but it's common and that it's a multidisciplinary approach. So pelvic floors physical therapy is always in the mix. I've never had a patient that had sexual pain that didn't see my therapist. And then I would say that, you know, and we call it the biopsychosocial approach. So that is clinician, like a gynecologist, urologist, primary care, whoever does that. Plus, you know, pelvic, pelvic floor, PT, sex therapy, counseling. Sometimes psychotherapy is needed, too. But I think we're not going to have time to get into IC and all the things, because we spent so much time on pudential neuralgia, which is great.

I think it's wonderful. So I'm going to have to have you just come back for that one.

You will not have to twist my arm. I'm so honored to be here, Stephanie.

We had a couple of words to tell the people listening, whether or not it's a clinician, whether or not it's a fellow therapist, whether or not it's a patient. Some take home points about pudendal neuralgia. What would you summarize and tell them?

I think the symptoms are severe and distressing, but the treatment is there now in 2024, and it doesn't have to be as scary as some of the things that people may see online. There's a lot of considerations that can go in from a pharmacologic, a procedure, and a physical therapy perspective.

There's a lot that patients can do.

For themselves at home as soon as they know what they should and shouldn't do based on their physical exam. It's really a very mechanical diagnosis, just like patellofemoral pain. It just affects the things that are so much more important to our core and our well being. So I don't want people to be as afraid as I think they are. I really don't.

Okay, great. No, that's true, because I think that's what you'll see online. Right. Is like, people that never either got the right help or maybe had these extreme surgeries for it.

Right.

And so it can be very scary. I think support groups are great, but a lot of my patients tell me they have to kind of do a. In certain times, right. Because they can't get overwhelmed with all the sometimes negative energy. And sometimes it's not meant to be negative energy. It's just like the experiences have been so negative that that's what we see. So we have a number of pudendal.

Success stories that we write on our blog. I say, if you're having a dark day, read those, because a lot of times their symptoms exactly resonate with whoever's struggling at that moment. And so we will continue to write these because I think once you're better, you don't want to go back to that dark place of some of the online support groups and things that maybe made you feel so bad along the way.

Right, right. And what do you think? I mean, obviously, it's hard to say, but, like, some patients struggle with pudendal neuralgia for years, and so their pain relief takes more time. So I think that's an important concept, right. That it's not an overnight fix, but there is help, and there are ways to improve it. What do you think, like, from your experience, like, I guess it just varies depending on when they first were diagnosed with it or if you can identify the causative reason, but in terms of, like, length of treatment or, you know, that kind of thing.

So the length of time in physical therapy does vary. But I think one of the mistakes that people make is severity, and chronicity of the disease gets associated with entrapment, and they think it's entrapment because they're not better and the symptoms are so severe. That's not the case. We've seen very minor cases that were entrapment, and then I've seen very severe pain presentations that were just medically mismanaged. So I really think with this diagnosis, we have to be together as a team, and it has to be coordinated, not just you have a pain doctor and you have me. Like, we have to talk and figure out a strategy in a sequence. And that's also what I see as a problem when we see people who have failed other things is, like, you can't do a nerve block if your obturator internus is compressing the nerve and expect results. So that's, again, why we switched with the botox, then a nerve block, and then half the time, we don't need the nerve block.

And I think if there is unrelenting daily pain, pharmacologic therapies make sense, but the patients need to understand what those drugs are intended to do and how they work. And again, it's like temporary lifestyle modifications. There's always a way out of this. There always is. We just have to work together to make it happen on the patient side and both of the medical and PT sides.

Right. And that's really key, is teamwork. Like, you have to be able to work with all the other specialties so that, you know, your goal is to help the patient have a better quality of life. And if. If we're not all you on that same page. Then you need to find other clinicians who can be right and then become.

Their best friends and get into speed dial.

Yeah, exactly.

I am shameless. Oh, you're interested in your genital neuralgia. Let's talk.

Yeah, and I'm sorry, guys. I can't let you guys have Stephanie's number to get her on.

You can find me on social media if you have a question.

Yes, yes, absolutely. And we'll put them all in the show notes, all the ways you can get to Stephanie. But she is, you know, like I said, og treating this for the longest time, has so much knowledge and so much compassion for her patients. And, you know, if you're in California, in the Los Angeles area, that's where she is specifically. But she has many practices throughout the states, as I spoke to you about.

And we're available on telehealth as well to try to get people to help in their areas.

Oh, wonderful. That's very key here, too. So, you know, pelvic floor PT is essential even when we talk about Botox. Botox, not the cure. I mean, it can help, but you have to use pelvic floor BT as a conjunction. Like, I'll never do Botox unless someone's already in PT. And then I'll say, okay, let's do Botox along with PT, but not separately.

The strategy and sequence, and then we get better success.

Absolutely. Yes. So hopefully, if you're listening and you have an issue, you can, you know, learn a little bit about this because I'm here to educate so you can advocate for yourself. So thank you so much again, Stephanie. This has been great and we'll see you guys next episode for Gyno Girl presents sex, drugs, and hormones. Please like and subscribe to this. Write a review. I think those kind of things are what I'm supposed to say that will help my podcast.

Thank you so much. Thank you so much. If you have a second, please subscribe to this podcast.

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