How to Overcome Vulvodynia: Stories, Strategies and Support

Sonali-Patel
BBPT Staff

Welcome to The Pelvic Messenger, presented by Beyond Basics Physical Therapy, where we’re breaking the silence on pelvic health and pelvic pain. Hosted by our very own Dr. Amy Stein and Dr. Corey Hazama, two leading experts in the field, this podcast is your go-to source whether you’re a patient seeking answers or a healthcare provider looking to enhance your understanding and treatment strategies. From discussing the latest research and insights to sharing personal stories of triumph and resilience, The Pelvic Messenger is your companion on the journey toward healing and empowerment.

Dr. Amy Stein, DPT

Hi, I’m Dr. Amy Stein, pelvic floor physical therapist in New York City at Beyond Basics Physical Therapy. I have the wonderful honor of chatting with Dr. Jill Krapf today from the Centers for Vulvovaginal Disorders about How to Overcome Vulvodynia: Stories, Strategies and Support.

For those that don’t know you Jill, Dr. Krapf, although you are a wonderful resource on social media, can you tell us a little bit about yourself?

Dr. Jill Krapf, MD

Absolutely. I am a board certified obstetrician gynecologist. I trained in obstetrics and gynecology, and specialized early in my career in vulvovaginal conditions, including pain conditions and skin conditions. So I was very lucky early in my career to have excellent mentorship with Dr. Andrew Goldstein. I started the Center for Sexual Health at a major institution in DC and I ran that for a while. Then I joined Andrew Goldstein at the Center for Vulvovaginal Disorders and ran the DC office for a number of years. Recently I moved down to Florida, to Tampa, and I just started the Center for Vulvovaginal Disorders Florida, which I run now.

Dr. Amy Stein, DPT

That’s great. Well, we miss you in the Northeast area, that’s for sure, but you do such wonderful things. So tell us what exactly is vulvodynia?

Understanding Vulvodynia and Vestibulodynia

Dr. Jill Krapf, MD

Vulvodynia translates to an abnormal pain response of the vulva, which is the outer part of the female genitalia. That includes the opening of the vagina as well that we call the vestibule. When we say that someone has vulvodynia, we’re essentially saying that they have chronic pain of the vulva, meaning pain that lasts more than three months.

You can see that it tells us where the pain is located, but it doesn’t really tell us why someone is having pain. Most patients with issues in this area or patients that have pain with intercourse actually don’t have what we call generalized vulvodynia or pain of the entire vulva, they have

more localized pain at the vaginal opening. We call that vestibulodynia, which is pain at the vestibule. Now people can also have pain of the clitoris, which would be clitorodynia. So as you can see, it’s just a descriptive term of where the pain is, but not what causes the pain.

Dr. Amy Stein, DPT

Can you explain a little bit more about vestibulodynia? I know there’s been a change in definition and descriptive over the years. I think that would be helpful as well.

Dr. Jill Krapf, MD

There’s been a number of different names for pain at the vestibule. It’s gone through everything from burning vulva syndrome in the seventies to vulvar vestibulitis. Then when we realized that on everything is inflammation or infection, we called it vestibulodynia. And vestibulodynia can be, according to the latest terminology, either spontaneous or unprovoked, or it can be provoked. Although we are in the future getting away from that as well. What we like to do is to be as descriptive as possible as far as the cause goes, because that’s going to really help us determine the best treatment plan going forward. Vestibulodynia can be related to hormones. We call that hormonally mediated or hormonally associated vestibulodynia. It can be related to muscle. It can be related to nerve. Or it can be related to inflammation in general. There’s descriptive terms based on what we believe the contributing factors are and there’s usually more than one contributing factor. The other important thing is that as we’re learning more and more about these pain conditions, things are falling out of this black box of vulvodynia or vestibulodynia, and they’re getting their own terminology as we acquire research and experience. So for example, genitourinary syndrome of menopause, which was called vulvar atrophy before. We call that by its name, which is GSM. We don’t call that vulvodynia anymore. Now what we’re starting to realize is there’s other times in someone’s life where those hormone levels are low or those glands are affected, and those are starting to get names as well, such as genitourinary syndrome of lactation or due to medication. As we learn more, these are going to get more descriptive, which is a move in the right direction.

Dr. Amy Stein, DPT

It’s super helpful for the patients and practitioners as well, just to be able to identify it more and the causes. I know you’ve been instrumental in contributing to this, so we appreciate all that you do. Quick question about the hormonally mediated vestibulodynia. One of the common things that you’ve taught me and Dr. Goldstein is that it can be caused by birth control. What is the treatment protocol for that? I know a lot of patients are concerned about going off of birth control.

Dr. Jill Krapf, MD

When it comes to hormonally associated vestibulodynia or pain, which usually manifests as pain with insertion of anything. Whether that be a tampon or during tampon removal or insertion during sexual intercourse or a dilator. We can actually see on exam that those glands that produce our natural lubrication, which are located at the vestibule, at that opening area on each side of the urethra where the urine comes out and then down at the bottom kind of tucked into your hymenal tags, those can be red and irritated. And then when we touch them with a Q -tip swab, they’re uncomfortable. You can actually touch a millimeter outside these glands and it’s not uncomfortable. We know that there’s something with the glands that helps to maintain that tissue of the vestibule, as well as plays a role in obviously anything sliding against that area or creating friction in that area. There can be many different causes of the glands not having the hormone that they need. When we really tie it back down to how the body works, it can be a lack of these hormones in our body and that can be related to menopause, perimenopause, we can see this with lactation and postpartum. We can also see this with certain medications that decrease, especially testosterone in our system. What we are learning is that even though estrogen is very important for the inside vagina and the tissue of the vagina, and maintaining the health of the vaginal microbiota, the vestibule, that opening area, actually has a different hormonal makeup or different hormone receptors. The most recent research coming out actually maps these receptors. It shows that there’s more testosterone or androgen receptors at the vestibule, and then that decreases as we go further in. Then there’s less estrogen receptors at the vestibule and that increases as we go into the vagina. The key is that anything that decreases our testosterone or the ability of hormones to get to that tissue is going to have an effect on those glands and have a negative effect.

When we’re talking about birth control pills, not everyone that takes birth control pills is going to have what I call side effect from it, but a certain percentage of people are because what birth control pills do. They basically stop your ovaries from ovulating and they down-regulate or decrease the amount of hormone that your ovaries are making and replace it with a pill that you’re taking, which has estrogen and a synthetic progesterone. When that pill gets broken down by your liver as it does, because you take it by mouth, it creates this substance called sex hormone binding globulin, which is a protein that circulates around in your bloodstream and it attaches to testosterone and makes it not work at these glands. We have to remember that a hormone is something that comes from one place or it’s made in one place and it acts in another wherever there’s receptors. For simplicity, we can think there’s receptors in the brain, there’s receptors in the breasts, there’s receptors in the genitals, right? So if these hormones are circulating around and there’s not a lot of them or if they’re bound and they’re inactive, then they’re not acting at the glands, it’s almost like a little like a post office, right? So they’re not delivering the mail to the mailbox in the glands. The glands basically can’t work the way that they normally would and then you get tissue discomfort, breakdown, fissures, increased infection, increased urinary tract infection, and a sequelae of symptoms related to that.

The other thing that I do want to bring up that has to do with the pelvic floor muscles is that we also see lack of hormone to the glands, related to hormone not being able to get to this tissue. For example, someone could have completely normal blood work when it comes to their hormones. Their testosterone may be normal, their sex hormone binding globulin is fine, their estrogen is fine, but if their pelvic floor muscles and the superficial muscles of the right under the introitus or the vaginal opening, if those are tight and impeding blood flow to this tissue, then that tissue and those glands are also not getting the hormone that they need. We can see a hormonally mediated component associated with other things such as hypertonic or overactive pelvic floor muscle dysfunction.

The Role of Pelvic Floor Physical Therapy

Dr. Amy Stein, DPT

Thank you for mentioning that. Yeah, and that’s where pelvic floor physical therapists come in, because they help elongate the muscles and the tissues and they help increase blood flow. That’s what helps those hormones get there and why we work so well together.

Dr. Jill Krapf, MD

Exactly. And you know, we can supply hormone, I can supply hormone from the outside in, but really the only long term treatment is going to be to restore that blood flow, which is going to relate to releasing, obviously, those pelvic floor muscles and making them more functional. So that’s always the long term goal. And then we just supplement with a topical until that happens or until, you know, someone’s taking a medication that’s affecting these levels until that goes down and we can restore blood flow together. So there’s always a short term and a long term plan for this, but if we base it off of how the body works, we’re always going to be on the right track.

Dr. Amy Stein, DPT

I also explain to patients that could be a contributing factor to getting UTIs and yeast infections because there isn’t enough blood flow so those areas can’t heal or they’re more susceptible to infection. Helping with the pelvic floor muscles can also help reduce the risk. I don’t know if there’s specific research on it, but definitely clinically we’ve seen that quite a bit. Plus the overlap with the symptoms of UTI and yeast, as you know, they can mimic pelvic floor dysfunction with regard to the itching and burning and pain type feelings.

Dr. Jill Krapf, MD

Absolutely. I see that clinically as well and it makes sense because if the vagina is not getting enough estrogen then it’s not producing those good bacteria, those lactobacilli that produce hydrogen peroxide and keep the vagina pH low, which is an environment that suppresses bacterial overgrowth. So it’s, you know, the blood flow. The muscles are always very, very important and they’re often overlooked in this whole equation. I like to tell my patients, I think of infections like recurrent yeast infections or recurrent bacterial vaginosis or DIV. I think of all of these infections as a symptom rather than something to target because why as a 24 year old are you getting recurrent infections, right? And so we really need to look a little deeper. We need to look at the health of the tissue from a hormonal standpoint. We need to look at the health of the tissue and the muscle from a blood flow standpoint to make sure the tissue can maintain itself because in our best state, we are regenerating tissue, we are protecting ourselves, our immune system’s working. We want to get back to that. When someone has recurrent infection, it’s always, okay, why?

Dr. Amy Stein, DPT

You already explained some causes of vulvodynia and vestibulodynia. What are some other common causes?

Dr. Jill Krapf, MD

We really talked about muscle and hormone. Some other common causes are nerve related and there’s two ways that I like to think about nerve related causes. There’s the idea that there’s too many nerve endings in the tissue, or the skin of the vestibule or that vaginal opening area. And there’s some back and forth about how this occurs. Some people think that some people are born with too many nerve endings in this area and we call that congenital neuro proliferative vestibulodynia. Proliferation means too many or they’ve created more. That’s one idea. Another idea is that there’s some sort of insult to that opening area very early in life, whether that be with exposure with diaper creams or bubble bath or what have you. For susceptible individuals, that turns into basically an inflammation or a neuroinflammatory process. We call that primary. People who have always had these symptoms, have always had pain with tampon insertion or have never been able to insert a tampon, have always had pain with intercourse or have never been able to have intercourse due to the pain. That’s primary. There’s also something called secondary or acquired, meaning there was some sort of insult that someone can remember, like they used a yeast infection over the counter cream and then they had an allergic reaction and nothing was ever the same after that. That would be a very common history that I hear for acquired neuro proliferative. Those are two that we believe there’s too many nerve endings in the opening. The other type of nerve is something completely different. It’s basically the nerves that provide innervation or feeling or sensation to the vulva, which are called the pudendal nerves. They come out of the sacral spine at the levels of S or sacrum, two, three, four combined together and then they wrap underneath the pelvic floor muscles, notch around your sitz bone, which is the ischial spine, and then divide into three branches on each side. The top two branches go into the clitoris and that’s called the dorsal clitoral nerve. The middle branches are the labial nerves of the pudendal nerve and then the bottom branches go to the rectal area. People that have pudendal nerve irritation, we call that pudendal neuralgia. Neuralgia means nerve irritation. Pudendal is the nerve. People have this, and again just like vestibulodynia and just like vulvodynia, pudendal neuralgia tells you what nerve is irritated. It doesn’t tell you why. It doesn’t tell you the cause of it. So that’s another consideration. It can be anything from an issue in the lower spine, in the sacral spine, the lumbar spine. It can be something in what we call region two, which is where those pelvic floor muscles are, or it could be something related to the clitoris or on the vulva. It can be anywhere in that nerve pathway or even something in the brain really. That’s another nerve consideration.

What I tend to see, I’m curious to hear your take on this, is that people that have really tight pelvic floor muscles, that nerve is running underneath the pelvic floor muscles with the artery and the vein. And then that whole area, that whole complex is wrapped or surrounded by almost like a saran wrap that we call fascia. And so if you think about it, if those muscles are tight and shortened, then it’s pulling on that saran wrap and it’s pulling on that nerve that’s sandwiched between. You can have essentially a functional, meaning reversible, nerve irritation related to the tight pelvic floor muscles as well. I oftentimes see people that have vulvar symptoms, like they have difficulty wearing a seam in their pants or wearing pants or yoga pants or they’ll have irritation of the pubic hair as it grows on the vulva. All of these external vulvar sensitivity symptoms, but it’s related to irritation of the pudendal nerve, which is related functionally to their pelvic floor being tight.

Dr. Amy Stein, DPT

Very well said. Yes, I 100% agree. It’s hard to sometimes find the cause for sure. I’m sure this happens with you, when the patients come in, there’s quite a bit going on. Not everyone. Sometimes it’s very straightforward, but particularly more with pain conditions and conditions like pudendal neuralgia, it is like playing detective or peeling away the layers of onion. Where is this coming from? What could be the cause? We don’t always know, but we do know how to fix it. Obviously the physical therapy helps with the muscles and the blood flow and the fascia as you mentioned, that’s wrapping around. that keeps everything in place, but with this, with something specific like pudendal neuralgia, it gets too taut and doesn’t have enough room to move and slide and glide, and nerves like to slide and glide. That’s from a physical therapy perspective, we work on the muscles, we work on alignment, behavioral modifications is a big thing that we do because, I explain all the time, if you’re constipated and straining, then it’s only going to keep aggravating those muscles and the nerve. From your perspective, what are some things that you do that help with pudendal neuralgia?

Dr. Jill Krapf, MD

Absolutely. When I present treatment options, I tell people it’s like going from the shallow water into the deep water. We start with our behavioral modifications, exactly what you’re talking about. We have to do pelvic floor physical therapy to lengthen and release the muscle around the path of the nerve. And then after that a pudendal nerve block is the next step because a pudendal nerve block is diagnostic as well as therapeutic. Let’s break that down. What is a pudendal nerve block? Essentially a block, a nerve block is where we inject a medication around the area of a nerve. We’re not actually injecting into a nerve, we’re just injecting in around that nerve or kind of in the location of a nerve. What we inject in that fluid is typically an anesthetic medication. Something like a lidocaine or a Bupivacaine, these medications numb the nerve temporarily from where we inject downstream. If we do an injection where the sitz bone is, it’s going to numb the nerve from the sitz bone to the vulva, all those branches, those three branches on each side. Most people are familiar with an epidural, right? With childbirth. An epidural is essentially a nerve block that goes into the epidural space. It’s the lower back and it blocks or provides anesthesia from that point downward, right? You can still breathe. You can still move your arms. It just goes from that point downward. We usually start with a pudendal nerve block at the level of the ischial spines, which is the sitz bone. And then if we add a little bit of steroid into that liquid, the steroid works to decrease inflammation around the nerve. That usually lasts for about three to four weeks or so, and that can also help calm the nerve.

The other thing is the liquid itself, even if it was saline or salt water, if we injected liquid around the nerve, it can sometimes help if the nerve is stuck, like we were talking about, or if there’s scar tissue and there’s entrapment, right? It can help. It can kind of free up the nerve a little bit until that fluid dissipates, but it might be enough to help it glide a little bit better. Even the injection of just that liquid with nothing else in it, also can help as far as a nerve block goes. And what we’re looking for with a nerve block is not like one nerve block and like you’re good for the rest of your life, unfortunately. I wish it was like that. Generally what happens is you get the numbing effect and that lasts for about three to four hours. And if you have longer term effects, that’s wonderful. It’s probably not going to be 100%, but even if it’s a little bit, it tells you that the nerve is involved. If you have a nerve block and it takes away at the ischial spine and it takes away your clitoral pain, for example, then we know that the pudendal nerve is involved in your clitoral pain. That’s what makes it diagnostic. Typically the other things we talked about, like the steroid and the fact that you’re injecting liquid around the area. That’s what makes it therapeutic.

If someone has at least an 80% improvement, even if it’s for a short time, like a few hours, then we say that that’s a positive nerve block and then we would recommend either serial nerve blocks because each time it helps a little more, especially that little bit of steroid. Or we would talk about more long-term things that can be done to the nerve to kind of bring down the noise that the nerve is making as far as the pain goes. Even though I’m involved in diagnosis of these things and I can do a nerve block, these are usually done by pain management and rehabilitation doctors or by anesthesiologists or interventional radiologists, depending on the imaging that’s used when these nerve blocks are performed.

The Importance of a Multidisciplinary Approach

Dr. Amy Stein, DPT

Great, thank you for that explanation. Yeah, I like what you were saying about even if the medication isn’t exactly what’s helping, even just that fluid in that area can help the nerve glide and slide. That’s also where physical therapy can help, because it helps release the tissues around the muscles and that nerve area. On the flip side, nerves don’t like to be poked. I also explain to patients that if we are trying to figure out what’s going on and I do poke at it, it’s gonna irritate it. So I actually prefer to try not to do that and just go with the anatomy. Let’s just take it step by step and go from there. But yes, I agree with that statement that nerve tissues like fluids. So drinking, drinking lots of water too can help just overall health as we know.

Dr. Jill Krapf, MD

Yeah, and then obviously from my standpoint, there’s also oral medications that calm down all nerves in our body. Even though it’s kind of a broad approach to a local problem, these are also some options that we have. These generally include our medications like gabapentin, which is a very common medication used for different things like nerve issues with diabetes and after surgery for nerve protection and things like that. We have gabapentin and pregabalin and we actually have some antidepressants that have nerve qualities. We have SNRIs like Cymbalta or Diloxetine. We also have old school tricyclic antidepressants like amitriptyline and nortriptyline. Although all of these medications have risk as well as benefit. It’s always important to go to somebody that’s very familiar with these medications to make sure that it’s the best choice for the clinical presentation and aligned with someone with what someone cares about and what their values are. But it’s always good to have a spectrum of treatment options, and oftentimes we’re multimodal in how we address the different conditions.

Dr. Amy Stein, DPT

Yes, and I agree with you do have to weigh the pros and cons of the medication. A lot of them do cause constipation. What I’ll suggest to the patient is make sure even before you start, let’s like get a dietary plan together, like whether you want to increase fruits and more cooked vegetables or that type of thing, or adding like a supplement, a fiber supplement or something like magnesium glycinate, things that help with the bowels so you don’t get constipated.

Dr. Jill Krapf, MD

Exactly, because constipation can make all of this worse. It’s always important to look at the full body, the full picture, and really consider these options, both in risk and benefit and, you know, temporary in nature, and really think about, okay, what’s our long term goal here? And how are we going to sustain improvement? You know, in a more natural way is always kind of where I like to lead it.

Tips for Cleaning the Vulvar Area

Dr. Amy Stein, DPT

I like how you create a taboo topic or topics into feeling comfortable about talking about it openly and with others. I wanted to go back to your comment about just like what you were mentioning as a kid or as a baby, being in the bubble bath and using certain creams. A big question that we get asked frequently is how do you clean the vulvar area or what are things that you recommend so that you’re not irritating that area?

Dr. Jill Krapf, MD

Yes, this is a big question. We’re not taught how to clean the clitoral area or how to clean the vulva. In general, we like to think of the vagina as a self-cleaning oven. We don’t need to douche, we don’t need to put soaps or anything inside the vagina. I’m even weary about boric acid vaginal suppositories. I don’t really prefer to use them unless absolutely necessary for very small, very indicated causes. But really the vagina is self-cleaning. We want to make sure that the vagina has all of the things that it needs like blood flow and hormone, naturally or not. And obviously healthy diet and everything like that. Now for the vulvar vestibule and the vulva, really the best thing to clean that area with is water. Some people do like to use something more, especially on the hair bearing areas because the groin creases, the hair bearing areas of the mons and the labia majora, these outer areas, they can accumulate sweat and bacteria and so forth. There’s a difference between a soap and a cleanser. What I like to tell people is think about what you would use on your face, right? You’re not gonna bring out a bar of like, you know, the blue soap to like scrub your face, because it would dry out your face and you would be itchy and uncomfortable, right? It’s the same with the vulva area. We want to use, if you’re going to use anything, I would recommend using a cleanser that has limited ingredients, no irritants or allergens. There’s really good products out there and there are a lot of the products that we use for our face. So things like Cetaphil, like vani cream, the things that you would you would think of when you’re thinking of what you would use for sensitive skin or for your face. And then there’s some specialty products that are designed for the vulva. Those are fine too, as long as we are looking at pH and osmolality, and as long as we’re making sure that there are no irritants or soaps. So we really want to stick to cleansers and not to soaps.

Dr. Amy Stein, DPT

I agree. A little while ago, I started a CBD product, I think I may have told you, and I created a lubricant intimacy oil. It can help with the pain right at the vestibule if they’re experiencing discomfort there. But most patients can’t use it internally because it’s an oil, so it would change the pH balance. I just tell patients, dab it on that area if you’re prone to infection. There are a lot of great products out there, more so now, like the more organic. They always say, if you can read the label, it’s definitely better. When you can’t read the words, maybe reconsider that product.

Dr. Jill Krapf, MD

Absolutely, and everyone’s sensitivities and allergies and what’s an irritant are different, right? Some people are allergic to or sensitive to parabens and so they have trouble with different sunscreens and some people are completely fine. We all have different reactions based on the way that our immune system targets and the way our immune system reacts to things. And then also based on the general health of the area, right? That’s going to determine how many challenges we can sustain to that area. It’s always a good idea to stick with natural products. The other thing to know is that some of the prescription medications that we have, such as topical steroids, many of the topical steroid ointments and creams have parabens in them, right? It’s important to know if someone has a sensitivity like that because they think that they’re allergic to a steroid when in fact they’re actually allergic to the base or they’re sensitive to the base. And so it can get a little confusing, but when we just break it down that way and limit ingredients and, you know, try to keep everything as simple as possible, that’s usually the best thing to do for the vulva as well as the face.

Managing Flares: Strategies for Pain Relief

Dr. Amy Stein, DPT

Can you give some tips on if they’re having a flare, what they could do in the moment or something more long-term and sustainable?

Dr. Jill Krapf, MD

Yes, absolutely. It goes back to cause. But if we’re kind of taking a broad look at things, if we think things are more muscular, which there’s often a muscular component, I mean, once pain becomes chronic, there’s a reactive component to it. It’s just the way that our body operates. When we’re talking about muscle flare, that burning soreness sensation, ways to release the muscle. Think about it, if you slept on your neck wrong, right? And you had a really tight neck muscle or like a charley horse, right? It’s almost like having a charley horse in your pelvis. Things that tend to help are going to be warm environments, so like a heating pad or a warm bath. And then the other thing is going to be obviously rest and position, also breathing exercises, right? Relaxation or release exercises really going through the tightness in our body and releasing components of our body, including our jaw and our pelvic floor. These are the things. What I like to tell people, you know, the natural inclination when things are painful is to really have what we call a pain related anxiety associated with it. When pain becomes chronic, it rewires our brain in a way.

For example, if you ran into a desk and you stubbed your toe, that’s gonna hurt, right? You’re probably gonna jump around a little bit. You might rub it to distract the area. You might put some ice on it, what have you, but you’re not going to have catastrophizing thoughts like, I’m never going to have a normal toe again. I’m never going to be able to walk. I’m never going to be in a relationship. However, if you stubbed your toe and in a few days you would expect things to feel better, but they’re not feeling better and it still feels the same. And then you go to your doctor and they’re like, I don’t know. It looks, your toe looks normal to me. Then you go to a toe doctor and they’re like, I don’t know, it’s not broken, so it’s fine. If you keep doing this and that pain is lasting for weeks on end, months on end, then it’s natural to have that pain start affecting other areas, right? Your leg starts to get tight. You’re thinking about it in a different way. You’re thinking about your toe all the time. You’re taking pictures of your toe, right? And comparing it day to day. This is what happens. It’s important to really have a toolbox when it comes to chronic pain. Instead of going down a catastrophizing journey or instead of doing things that are not helping you or that are keeping you tight, instead you’re reaching into your toolbox and you’re doing five diaphragmatic breaths, which down regulates the sympathetic nervous system. You can think of obviously the diaphragm is like the top of a pop can or a soda can, the pelvic floor is the bottom. If you’re bringing blood flow into the whole circuit, right? That’s helping. Or you think about our gentle stretches or our mindfulness or our heating pad or what have you. There have to be go-tos that you can have when you’re in a flare. I find that has the most success as well as obviously maintaining your essentially maintenance exercises or, you know, it’s just like plugging in your cell phone. If I don’t plug in my cell phone, the battery is going to die. If I’m not, retraining my pelvic floor and maintaining a healthy balance in my pelvic floor, my pelvic floor is going to be weak. When I provide a treatment plan for someone, I give them a toolbox for in the moments. I actually give them a sheet of paper because I find that it’s just easier for them to grab it and be like, okay, yeah, here it is. And then the other thing is I put maintenance exercises or maintenance activities in place so they have something to rely on knowing that they are actively doing something to help their condition from day to day. I think that those two things are essential in addition to obviously putting things in place that are treating the physical part.

Dr. Amy Stein, DPT

Yeah, and I would add, my book has a lot of that, Heal Pelvic Pain. Definitely having that as a resource at home that you could refer back to, can give a sense of ease because there’s other things to do. But I love the idea of having one sheet too, because then it’s like, okay, I have my toolbox right here. And we also recommend, and I know you do too, therapeutic wands that can be helpful if you’re in a flare, but also really learning how to use the wand is really important because I’ve had so many patients flare from it. Even the other day I had a patient. This happens quite a bit. I thought the patient was using it right. We had gone over it like once or twice in the beginning and then it’s like, okay, bring it back. Let’s see how it’s going and they were actually using it the opposite way. So definitely knowing how to use things correctly, but also really listening to your body as well. In your toolbox, maybe that stretch that you did the other day, it’s not working this time or even the lightest stretch is flaring you. Strategy is to move on to the next one. Maybe that day it’s just about going out for a walk in nature, taking in your five senses or four or whatever on your walk and just listening and smelling and looking at the beautiful things, especially during springtime, which it is now.

Dr. Jill Krapf, MD

Absolutely. Yes, I love wands. Wands are an amazing tool, but it’s like going to the gym and using the gym equipment, right? If you don’t have someone showing you the ropes of things, you can get into a bit of trouble. The wand is a tool and tools can be used in a proper way and tools can be used in an improper way. I think it’s really, really helpful to have really good instruction at the start when it comes to wands and other tools that we use in the physical therapy world.

One of the things that I have my patients do, you know, Another thing that I hear patients say that I think is important is that sometimes we give them so many treatment strategies that they just feel overwhelmed and then it becomes a burden almost to do these things. It’s like, you know, I have kids and I have to lock the door so I can do my dilator therapy. And I have to get out the dilator and then I know I’m gonna have to clean the dilators and this is such a big production that I’m just not going to do it. We see that over and over again. What I try to do is I try to come up with strategies where we can do physical therapy techniques or exercises or tissue mobilization when they’re doing something they’re already doing.

For example, for my patients that have hormonally mediated vestibulodynia with the pelvic floor component, which is a common overlap. When I have them apply a topical, like an estradiol testosterone, cream, or gel, I’ll have them do perineal massage as they’re applying it because they’re applying something anyway. I’ve done that with all my patients. I’ve been doing that for a few years now and it’s been really helpful. I have them just put it where it needs to go and then I have them basically just massage out or do some release on those pubococcygeus, the transverse perineae, the bulbospongiosis, all of those opening muscles and it makes such a difference. And they’re really not taking any extra time, any extra effort, but it ensures that they’re doing physical therapy twice a day, which is pretty good.

Dr. Amy Stein, DPT

That is good. When I first started doing this way back when, I would give them a packet of information and I’d give them articles and, and now I’m like, okay, so how much time do you have? What are you already doing? A lot of people do stretch. They may only stretch five minutes a day. Okay, let’s just add deep breathing to the stretching routine. And then there’s your one time a day that you’re doing that deep breathing. Then when you’re driving or on the subway or wherever else, practice that deep breathing again. So I 100% agree with that because if you give them too much or things that they don’t like to do, then they won’t do it.

Dr. Jill Krapf, MD

Yes. They’re not going to do it. Exactly. With stretching, I have them do five diaphragmatic breaths, run through a few different stretching poses, working with their physical therapist, of course, to determine. Hold those poses for like a minute to two minutes each. It does not have to be a big thing. It’s like 8 to 10 minutes. And then I have them double dip. I’m like, go ahead and put on aromatherapy, or put some music on that you like or go into a sunny room, do it outside, whatever you want to do. Pick a time of the day where you’re like, I’m looking forward to this. This is my me time. It’s only 8 minutes. And then they put that in their schedule. What I find is after we get them better from a pain standpoint, they’re more likely to continue this maintenance. and then it keeps them out of flair in the future. Or if they get into a flair, they can say, I’m gonna go ahead and jump back on the wagon with this. I think that it’s actually really helpful to set these habits in place.

Dr. Amy Stein, DPT

I agree. And then they’re more likely to stick to it. I always remind patients, if they’ve been discharged from PT because they’re doing really well, if they do email me and say, I’m having a flare. I’ll first say, go back to those things that you like to do and that you found helpful. And then if not, you’re always welcome to come back in. But I would say at least half the time they end up not coming back in because they know the tools. They have their toolbox.

Dr. Jill Krapf, MD

Absolutely, and it’s so empowering to provide patients with something that allows them to take care of themselves, right? We’re teaching them the tools and the way that the body works and we’re giving them the resources that they can use in the future. So they’re not reliant on going into a doctor’s office. Now, of course, we’re always there when things get out of hand. But it is empowering to have those first step approaches or that maintenance routine that keeps you long term balanced. I think that that’s so important. It’s an important job that we have.

Functionality over Cure: Long-Term Management

Dr. Amy Stein, DPT

So the big question, and this is a tough one, can you cure vulvodynia or vestibulodynia?

Dr. Jill Krapf, MD

The answer is that our goal is not cure. Our goal is to have someone be functional and out of pain. Those two things. No chronic pain or being able to manage pain if it does come and to be functional in whatever way works for them, whatever that looks like. That’s different for everyone. I like to get away from cure. I like to get more into management and functionality, and long term body balance and education. I think that’s what it comes down to. Just like anxiety, there’s always going to be stressors in your life. There’s always going to be things that come, there’s always going to be germs around that are going to give you a cold, there’s always gonna be these challenges, it’s how we deal with them. It’s how we take our vitamin C and try to eat healthy. And it’s how we manage our stress with mindfulness and exercise and diet. Same with these vaginal conditions. It’s the things that we do day to day that help to maintain us. And then when things do flare up or get out of hand or we get a yeast infection or what have you, it’s early recognition. Then it’s basically getting back on track with the things that keep our body working in the way that it needs to work.

Dr. Amy Stein, DPT

Yes, and keeping it healthy. I explain it to patients, we’re going to do everything we can to get it as best as we can. And I have seen a cure, but I always tell them, that area is a sensitive area. As soon as you feel, the littlest sign of any type of symptom that you used to have, make sure you get on top of that toolbox. Make sure you contact Dr. Krapf to make sure that it’s not a yeast infection or something else that could aggravate your symptoms and start that cycle. Fortunately, what I’ve seen is that if they’ve gone down the route of seeing someone like you, seeing someone like me, then they’re not as scared by it. And then also, they have the tools to know, let me go back to the heating pad or the hot bath and maybe go back to physical therapy. Maybe I do need a cream again. But fortunately, most of the times I’ve seen where it’s never been like that first visit when they’ve come to see you or I, so that’s a positive.

Dr. Jill Krapf, MD

Exactly. And you know, even if someone has an autoimmune skin condition, like lichensclerosis, right? There’s no cure to lichensclerosis. But all of my patients, for the most part, I get them to the point and they get themselves to the point where they are pain-free, symptom-free, able to live their life, able to be sexually active. They’re not thinking about their vagina every day. We can get them to a point where they’re asymptomatic and thriving. Even though there may not technically be a cure for their condition. And then of course there’s other people that have dysbiosis and we’re able to figure out a good regimen for them and they’re good. Certainly with hormonally associated, we think that there’s a propensity of some sort. We’re able to overcome that in different life stages, but it’s always something that we’re mindful of, but we’re still getting them completely better. You know, it’s really about symptoms and function in the way that I like to think about it.

Dr. Amy Stein, DPT

Yeah and for some patients, it could take a couple weeks, I would say, not new typical, but a couple months. Some take patients that does take longer. It also depends on their commitment to doing what you’ve recommended, to doing the physical therapy and what we recommended. So the timeframe can vary as well, person to person.

Dr. Jill Krapf, MD

It’s true. And for some people, the other thing to remember is that there’s different conditions that people may not be aware of that contribute to this. Like some people have collagen disorders. They have hypermobility or they have Ehlers-Danlos syndrome or some sort of connective tissue disorder, or they have mast cell activation syndrome, or these things that we’re starting to learn more and more about. And so when it comes to that, you know, those people that have something about their body that they have to compensate or overcome. It’s completely possible. It just may take longer for them to really get there. Whereas someone who had an acute injury and then heals from that injury, they may get there a little faster. So it’s always good to set up expectations and to really figure out what the underlying risk factors are so you can give people good expectations on how long it will take to improve or what’s all involved in improvement.

Dr. Amy Stein, DPT

I agree, I agree. This has been wonderful. I wasn’t sure if there’s any last minute tips or anything else you wanted to add.

Resource Recommendation: ‘When Sex Hurts’ Book

Dr. Jill Krapf, MD

Well, if you want to learn more about all of these conditions, I am one of the co-authors on a book called When Sex Hurts. Even though the title says when sex hurts because we were trying to be very blunt and upfront and unapologetic about these conditions, it’s even good for people that are not sexually active or not concerned about sexual activity because it really involves all pain conditions of the vulva, vagina, and even genitopelvic, even the pelvis. So it goes into detail similar to how I did really breaking things down. And I’m one of the authors along with Dr. Andrew Goldstein, Dr. Erwin Goldstein, they’re not related, and Dr. Caroline Pukall. And so the four of us came together to create this book. It’s the second edition, but it’s 80% new and I’m really proud of it. All proceeds go to the National Vulvodynia Association. It really supports research in this area and we really need that research support. I encourage you to check that out if you would like to learn more about any of these conditions.

If you’d like to see me and have me be your doctor, I am seeing patients in Tampa, Florida. I have my own practice and you can learn more at my website, www.jillkrapfmd.com. And I’d be happy to see anyone with these pain or skin conditions and get you better.

Dr. Amy Stein, DPT

And where can they find you on social media?

Dr. Jill Krapf, MD

Oh yes, so I am on Instagram mainly, although I do share a bit to Facebook, less so to TikTok, but mainly on Instagram, @JillKrapfMD. And I have an educational account. Basically I share education and awareness, and support around all of these conditions that we discussed.

Dr. Amy Stein, DPT

That’s amazing. You have just been inspirational to so many people, including myself. And I’ve really enjoyed working alongside of you at ISSWSH and other events that I’ve been fortunate to do with you. And I really appreciate you taking the time and really spreading the word about Vulvodynia and just being out there for so many people and making a difference. So thank you again.

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