Become a Creator today!Start creating today - Share your story with the world!
Start for free
00:00:00
00:00:01
4. Vulvodynia with Dr. Andrew T. Goldstein image

4. Vulvodynia with Dr. Andrew T. Goldstein

S2 E4 · Our Womanity Q & A with Dr. Rachel Pope
Avatar
370 Plays2 years ago

Vulvodynia is a chronic pain condition characterized by discomfort, burning, or pain in the vulvar area (the entire vulva or only the vestibule)  without any obvious cause or visible abnormalities. The vulva refers to the external female genitalia, including the labia majora and minora and clitoris. The vestibule is the vaginal opening.

Symptoms of vulvodynia can vary in intensity and may be constant or intermittent. The exact cause of vulvodynia is often unclear and may involve various factors such as nerve inflammation or sensitivity, hormonal changes, pelvic floor muscle involvement, or inflammation or infectious causes. It can also be associated with conditions like pelvic floor dysfunction or chronic yeast infections, although these are not always present.

In this episode, we discuss Vulvodynia with Dr. Andrew T. Goldstein. A Clinical Professor at the George Washington University School of Medicine and Past-President of the ISSWSH, Dr. Goldstein will shed light on vulvodynia, an often misunderstood condition affecting women's sexual health.

Featured in this episode:

Resources:

Submit your questions on anything and everything women's health-related and we will answer them in one of our episodes.

Subscribe to our newsletter here to stay updated and not miss out on new episodes.

Recommended
Transcript

Introduction to Dr. Andrew Goldstein

00:00:00
Speaker
Welcome back everybody to Arbomanity. I'm so excited to have Dr. Andrew Goldstein. He's an OBGYN and a specialist in vulvovaginal disorders. I'm sure many of you listening already know who he is. He is the founder of the Centers for Vulvovaginal Disorders. He's past president of Ishwish. He is one of our pioneers in the field of female sexual medicine, and he is on the cutting edge of research specifically for vulvovaginal disorders, but he is widely published.
00:00:29
Speaker
We're going to talk about some of the things that he's been writing recently so you can read some more of his hot off the press literature.

Understanding Vulvodynia: History and Treatment

00:00:37
Speaker
But today we're going to talk about Volvodynia. So thank you so much Dr. Goldstein for being here. You are the first male that I've had on our podcast so far.
00:00:45
Speaker
Yeah, and also with the gray hair. I'm trying to obsolete myself, I promise. As you know, I try to train lots and lots of really competent, brilliant, energetic, fabulous, younger women to take over. But I still think I have some stuff to give to the world of our pain. And so until they kick me out, I guess I'm going to keep plugging away.
00:01:11
Speaker
No, we're very happy for everything that you've contributed. And so let's just dive in. I would love to ask you just some very basic questions, like what is vulvodynia? I think some people have heard the term, some people have not, but can you just tell us what is vulvodynia?
00:01:27
Speaker
Sure, well, vulvodynia is a term that's been around for about 40 plus years and really for the first 30 of those years, vulvodynia meant vulvar pain of at least three months without known cause and basically it was a black box of we don't know what it is and we don't know how to treat it and women don't get better.
00:01:48
Speaker
what i am happy to say and when i started my career honestly when i start doing this about twenty five years ago i could say if a woman came in and i said she had all the dinner i would say that fifty percent of women got about fifty percent better and i was gonna unfortunately i'm happy to say now that we know a lot more about all the dinner we cracked open this black box for i think we've been exploded this black box really.
00:02:13
Speaker
And so now I think that we get about 85% of women, about 85% are better. So I think we've really made great progress. So vulvodynia does mean vulvar pain of an unexplained cause, except that research over the last 20 years has found a lot of associated factors such that we can now come up with what is known as a differential diagnosis, which is the potential causes
00:02:41
Speaker
of vulvar pain, vulvodynia. So even though I have the website vulvodynia.com and everyone asked me to speak about vulvodynia, rarely do people actually leave my office with the diagnosis of vulvodynia. Oh, that's interesting. Because that usually means I can't figure it out. Better permission than me, I actually can almost always figure out the cause of the pain and therefore I don't call it vulvodynia anymore.
00:03:09
Speaker
Oh, okay. Tell us more about that.

Identifying Causes of Vulvodynia

00:03:11
Speaker
What are the other things that when you can figure out the causes, what are some of those causes and what would you call it differently? Right. First of all, we try to localize where the pain is. The whole vulva, all the external genitalia is the vulva. It's a little bit general. It's very general. That's labia majora, labia minora, the clitoris, the hood of the clitoris, and the entrance of the vagina called the vestibule.
00:03:32
Speaker
So if, for example, and the majority of people who fall into the vulvodynia category have pain at the vestibule, well, first we call it then vestibulodynia. So that's number one. So we're actually narrowing down. But we have lots of different causes of vestibulodynia. So there are hormonal causes. There are inflammatory causes. There's something called neuroclarforation where there are too many nerve endings in that area. And by far the most common cause actually, vestibulodynia and vulvodynia in general,
00:04:01
Speaker
is actually just what is called overactive pelvic floor muscle dysfunction or tight pelvic floor muscles. If I evaluate about 500 new vulvar pain patients a year, about 60% of them, the only cause of their pain are these overactive or also called hypertonic pelvic floor muscle. By far, that is the most common cause of vulvar pain by itself.
00:04:26
Speaker
are just tight pelvic floor muscles. Now, often you have to figure out why the muscles are tight. So there can be other causes of tight muscles, but tight muscles are what's causing the vulvar pain. And what's interesting is the pain doesn't feel
00:04:42
Speaker
like it's a muscle pain. You can have a charley horse, torn muscle or a sore muscle, and that sort of has that type of quality. In the vulva, that's not exactly what it feels like. You actually get the skin or what we call the mucosa of the entrance of the vagina actually feels tender itself. It feels raw. It feels burning. And so the muscles underneath cause the skin itself or the mucosa to be hypersensitive and to feel stingy and burning.
00:05:09
Speaker
Yeah, burning is the description I hear from patients the most. Then if a woman is having penetrative intercourse of any type, then they'll have a pin upon penetration as well. I see that for a lot of my patients, I'm assuming for you to this, the starts kind of when they're trying to use tampons and they're not really able to use tampons because that sort of direct stimulation to the entrance of the vagina is, is painful or too painful to proceed with the tampon.
00:05:37
Speaker
We will call that primary vestibulity, meaning they've had pain forever since the first attempt of any type of penetration, whether that's tampons or a speculum for the first time if they went to the gynecologist or fingers when they're having first sexual experience or a sex toy or penetration during penetrative intercourse. So that would be what we will often use the term primary vedinia, but also an awful lot of women do develop it over time, get a variety of reasons.
00:06:05
Speaker
Often, if they have pain since the first attempt at tampon insertion, and it's always been painful, they've never been able to have pain-free penetration of any type, then that often is a different cause of pain. I mean, it can be the type of pelvic floor muscles, but that can be a situation where the woman is born with too many nerve endings.
00:06:26
Speaker
at the entrance of the vagina the stability that just means to know when we can actually be born with up to thirty times the normal number of nerve endings which is an incredible number of nerve endings and even to make matters even worse.
00:06:44
Speaker
These type of nerve endings are the type of nerve endings that are responsible for three sensations which are burning, rawness and cutting. So women would swear that even with the slightest touch that they're being caught with a hot knife. It's a searing your pain now.
00:07:00
Speaker
I would say that of these 500 new women a year, I would say that only about seven to 10% of the patients have that diagnosis. So that's much less common than the pelvic floor dysfunction. Now, again, some women can have pelvic floor dysfunction to a young age. And so again, they may have always had primary vestibulodynia, but it's due to the pelvic floor muscle dysfunction.
00:07:25
Speaker
if for example they had really bad constipation as a kid or they were super anxious as a kid or certain behaviors can make the muscles really really tight. So some types of elite athletes ballet dancers they hold their body up really tight all about the core but if they're squeezing their pelvic floor muscles as well that could be the problem or gymnasts
00:07:48
Speaker
or cheerleaders or figure skaters, even equestrians because they're squeezing the, they're using their legs.

Hormonal Influences on Vulvodynia

00:07:56
Speaker
So I don't want anyone to get the idea that just because it's always hurt means it's too many nerve endings. Additionally, another cause painted the vestibule are hormonal causes frequently caused by oral contraceptive pills.
00:08:13
Speaker
Yeah, let's talk about that because people don't realize that. And I know even as a gynecologist, I never was taught that in residency, right? And then I see it very often clinically. Why does that happen to people? So we call that hormonally associated vestibulodynia and
00:08:30
Speaker
The tissue of the vestibule, the entrance again, is very hormonally sensitive tissue. But it may surprise, not you, but some of your listeners, that that tissue is actually much more sensitive to the hormone testosterone than to the hormone estrogen. And oral contraceptive pills
00:08:50
Speaker
for up to three different mechanisms, lower testosterone. In fact, they're used for that, especially in teenagers, because they're great for acne. Teenagers are often prescribed birth control pills because of hormonal acne, which is really good for the acne, but it's really bad for the vestibule.
00:09:10
Speaker
Additionally, young women or teenagers are often prescribed oral contraceptive pills because of painful periods, what we call dysmenorrhea, which is pretty common just shortly after getting a period of the first several years. Especially in dysmenorrhea, it can be very disruptive to a young woman's life and school, and so a young woman is prescribed birth control pills well before there was ever attempted penetration.
00:09:35
Speaker
So you don't really know which came first, the chicken or egg, that always hurt. So I don't usually use primary as necessarily. It's one piece of the evidence, but it does not mean necessarily that you're born with too many nerve endings.

Diagnostic Approaches to Vulvodynia

00:09:49
Speaker
One little piece of that puzzle, and we really spend a lot of time when I evaluate a new patient with this, we spend
00:09:57
Speaker
And I know you've spent some time in my office. We, we spend, you know, 25, 20, 25, 30 minutes going through the history. Yeah. So important. Just to try to get the piece out what our potential causes. Kind of have to play a detective, right? You have to get all these pieces from the entire person's life and figure out, yeah, the pain, what started, what all the contributing factors.
00:10:21
Speaker
Yeah. I also, I don't know if you ever remember that, that old TV show house, really complicated cases. I sort of feel like I'm the vulvar house because it's also by the nature of our practice, both seen on average seven other doctors first. Exactly. So we really have to dive into it and figure out what's going on.
00:10:41
Speaker
Right. Question for you. Do you see people with the hormonally related vestibulodynia along with their cycles? Like they have pain or burning the week before men seize? I have a few patients that are kind of fall into that category and I've wondered if that's a hormonal cause or what exactly is going on there.
00:11:01
Speaker
My best guess then, generally, hormonally mediated doesn't come and go. The pain is cyclic. It's more likely due to overactive pelvic floor muscle dysfunction. Now, I will say, and you know this, that all pain
00:11:17
Speaker
and naturally cycling women is cyclic because hormones affect many things. They affect, number one, nerve conduction. So, immensely, there is actually more nerve conduction, which means more pain. So, if I pinch a woman when she's ovulating, and then you pinch a woman with the exact same force, right before she is having a period, she will experience more pain.
00:11:41
Speaker
That's why they say you shouldn't get waxed right before your period. They say waxing is way more painful right before men's seats. No, see now, now that's why you don't have men on, you don't have many guests because I can't tell you about that. No, but it makes sense.
00:11:57
Speaker
It's funny, someone would often apologize that they're not waxed or groomed when they come to me and I'm like, what are you talking about? Another reason that hormones affect a pain is actually hormones affect muscle tightness because progesterone causes muscle relaxation. So if you write premenstrually when you have a drop and progesterone, muscles tend to get tighter. A lot of people want to sort of hang their hat on, well, my pain waxes and wanes with my menstrual cycle.
00:12:26
Speaker
tell you why I have pain. And the answer, unfortunately, is it doesn't help me that much. But we also have to pay attention, though, to the possibility of more pelvic pain issues such as endometriosis, which would be menstrually associated. We just have lots of data that we have to think about, let it percolate up here, and try to figure out the cause of the pain. And that's the difference between vulvodynia 30 years ago, which was everything was vulvodynia, and we treat vulvodynia like that.
00:12:56
Speaker
versus figuring the cause of the pain.

Resources for Vulvodynia Education

00:13:00
Speaker
So, you know, I guess the answer is sort of like, Volvodynia was like walking into a doctor's office and saying, you have knee pain. Again, there are many causes of knee pain. There's arthritis, there's bursitis, there's torn ACLs, there's other issues, there's infections. And of course we try to, an orthopedic physician or a family medicine physician would go or sports medicine physician, they try to figure out the cause of the knee pain.
00:13:23
Speaker
If you walked into an orthopedic surgeon's office and he said, you have neodymium, well, if you could, you would run out the door. Isn't that funny? I guess I would say to your listeners, if someone just says you have neodymium, that's it. And we tweet volvodymium like this. That's really like...
00:13:42
Speaker
It's not enough. 1998 medicine, and it's not enough. And so we really have, again, broken open that black box and have really good ideas as to what may be the cause of the pain. And one of the things that may be famous for in the very, very small, famous, as my children would say, in the Volvodynia circles is that I've developed over the years, diagnostic algorithm.
00:14:08
Speaker
that both patients and physicians can use. So helpful. To really use the nuances of physical exam and testing to figure out the causes of the pain. Because then treatment is going to be different. Yeah. If it's hormonal cause, you treat hormonally. If it's pelvic floor muscle cause, then we do physical therapy and we do muscle relaxants and sometimes even Botox. It's nerve related. We use nerve medicine and sometimes we even do surgery to take out the nerves.
00:14:34
Speaker
Hi friends, I'm here to remind you to subscribe and like to the podcast. I love doing this. I love bringing people on, but I need to know if you're actually listening to me. I get no feedback out here. So I know things are going out and then suddenly I'll talk to someone and they say, oh yeah, I love your podcast. It's awesome. I'm like, oh, I didn't even know you were listening. So if you want to stay in the know, you want to get notified when new episodes come back, please, please, please subscribe and like go into your podcast and you just come
00:15:02
Speaker
upper right corner you press the plus sign and it turns to a check mark and then you're subscribing and then of course you can like it five stars of course right if you can please and um if you spotify if you use zencast or whatever you use it's fine just please subscribe and like thank you
00:15:18
Speaker
So that diagnostic algorithm actually is freely available. We have a website called vulvodynia.com. And if you go then to publications where it says vulvodynia, the first thing it says diagnostic algorithm that's available at that level. And what that is, is that sort of right out of our textbook, female sexual pain disorders. Now,
00:15:37
Speaker
If you want a little more layman explanation, but again, still just as useful, we did publish a book called When Sex Hurts. And When Sex Hurts, I can tell you 100% of the proceeds of that book go to the National Volvodyny Association. That's awesome. And so we don't, never made a nickel off this. Now, the second edition of the, of that book just came out last year, 2020 query.
00:16:03
Speaker
And it's about 70% new from the first edition, which was about 10 years older. So again, we've learned so much. So the first edition was really good because it was the first time to have a diagnostic algorithm. And it was really great, you know, cracking open that box and really giving people an idea. But second edition, I've written nine books, the best thing I've ever done.
00:16:29
Speaker
It's so important. And I had to live with all the efficiencies of the first book for 10 years. So I just said, I'm going to do this one last time. It really is a work of love. And I think it's really, really, really useful. It's so important that your team put out this new edition and made it accessible for patients and for providers. It's very easy to read. You can use it as a reference and go to specific chapters, or you can read it from the front to the back.
00:16:57
Speaker
We'll post it on the show notes so if anybody wants to look at it or purchase it you should definitely look into it. Like I was telling you earlier I didn't learn this in my residency and I felt like I was very well trained in my residency but I had someone who was a champion of vulvar disorders but I didn't even see vulvodynia in the very few times I was able to spend in clinic with her. Unless you really
00:17:20
Speaker
are diving into this, you don't see it. But now in my own clinic, I see it all the time and it's so helpful to have these resources. Okay. My last question for you, you said the most common type that you see is pelvic floor related. And so how would somebody suspect that that is what's going on for them and they should come see someone and then maybe also who should they go see, right? Because they're saying not everybody necessarily had the training to work this up and to do this treatment. Where would someone begin if they think it's maybe with their pelvic floor?
00:17:50
Speaker
Okay, so first of all, let's go to a couple of hints. So first of all, if your vulvar pain is like pain upon penetration, so that's number one, but the pain is really in what we call the back part of the vestibule, which is the area sort of closest to the anus or the perineum.
00:18:12
Speaker
Okay, so the pain is almost all there, and not too much pain up top by the urethra or near the clitoris. So if it's really just in the back, that's a very good clue, and there's specifically a point tenderness if the vestibule is a clock and the six o'clock is right at the bottom.
00:18:31
Speaker
The pain is really at six o'clock, or six, four, and eight o'clock, and maybe even tear at six o'clock. We have little tearing during penetration. That gives you a bit of a clue that that's probably what's going on. Some other clue. When the pelvic floor muscles are tight, that often gives urinary symptom, if the muscles up towards the bladder are tight, which very commonly happens.
00:18:54
Speaker
So if a woman has urinary frequency, you know, I hear all the time, Oh, I have a small bladder. No, you don't. It's your muscles around your bladder are really tight. You're the person who you're on the car for three hours and have to stop twice. So urinary frequency, urgency, you got to run to the bathroom, that sensation, incomplete emptying, like you go and then 10 minutes later, you can feel like you didn't really completely empty and got to go again.
00:19:17
Speaker
So those sensations, not necessarily burning with urination, but those three sensations, frequency, urgency, and the sensations of incomplete emptying, again, very frequently are associated with pelvic floor muscle dysfunction, constipation,
00:19:33
Speaker
Rectal fissures, hemorrhoids, again, the same muscles that go in the back part of the vestibule, the back part of the vagina, also can go around the anus and the rectal sphincter. So what happens is, again, you can get constipation, you can have tearing there with a little bleeding and you can get hemorrhoids.
00:19:52
Speaker
So that's other things. If you have low back pain or hip pain associated with these things and the pain at the entrance. So that algorithm that points us to that one diagnosis. Now, if you do have that diagnosis, then we believe that the muscles are both tight and short. And what that does, and the reason that causes pain is that cuts down blood flow to the muscles as well as the skin on top of the muscles.
00:20:19
Speaker
And if there's not enough blood flow, there's not enough oxygen to the tissue. And if there's not enough oxygen to the tissue, the tissue has to live what we call anaerobically or without oxygen. And then there's a buildup of lactic acid in the tissue. There's also inflammation in the tissue with lack of oxygen. And that causes that burning sensation.
00:20:36
Speaker
What you have to do is we got to get these muscles to both relax and get back to their normal length. We do two things to get them back to their normal length and we do a couple of things to try to relax the muscles. Usually if you do just one of those things, either relax but don't stretch or you stretch but you don't relax, then you don't get anywhere. The methods to get the muscles to lengthen is we send people to pelvic floor physical therapy.
00:21:02
Speaker
So there are many women's health pelvic floor physical therapists, more so in urban areas. There are over, I think over 3,000 women's health pelvic floor physical therapists now in the United States. And there are specialists in how to do this. We also have women use vaginal dilators in a very specific way, in a stretching manner.
00:21:23
Speaker
to get those muscles to stretch because those muscles at the entrance when they're really tight are like a tight V, but they're supposed to be a wide U. So if we can get them to squeeze a dilator like in a U smiley face way just in the back to get this to lengthen that muscle to turn that V into a U. Now again, those stretching techniques, the physical therapy and the dilators work but very difficult if you don't relax the muscles.
00:21:50
Speaker
So we use a couple of different muscle relaxants. So you can have oral muscle relaxants, or we prefer to use suppositories of muscle relaxants. One of the most common muscle relaxants we use is a medicine called diazepam. It's known as Valium. A lot of people know it for anxiety, but actually it's a very, very, very strong muscle relaxant. So we use suppositories of that, and we typically use them and erect them, but depending, sometimes vaginally, depending on where the pain is.
00:22:14
Speaker
And we're fusing a fair amount of something called botulinum toxin or what people now know as Botox or Dysport. And it's not because the vagina is too wrinkly. It's because those muscles are too tight and it relaxes the muscles.
00:22:30
Speaker
One of the things that you said that made me realize, you know, when people are trying to figure out whom to go see for this is that the person who's evaluating you for that you're trying to work up your pain, they should be examining your muscles and don't examine muscles with a speculum.
00:22:46
Speaker
You and I, we both were never taught how to examine the muscles. The average person out there going, what do you mean you don't know how to examine the muscles that go around the vagina? We were never, ever, ever taught this in residency and I still don't think 95% of residents are taught how to examine pelvic floor muscles for tightness. We're trying and the National Volvodymium Association and other groups are trying to come up for curriculum
00:23:13
Speaker
and medical schools and OBGYN residencies and neurologic residencies to train people, but we're still not there. So if you're a woman out there and you're having vaginal pain and your gynecologist says, everything looks normal, I don't see anything wrong, or you know we're doing a lot of research and gaslighting in this area, and they gaslight you just saying, it's in your head, or you just need to relax more, or you need to have a glass of wine.
00:23:39
Speaker
run to a gynecologist who knows how to examine your pelvic floor muscles. And I guess a couple ways to find who know how to do this. Ishwish has a finder provider. Yeah, we'll put that website. Ishwish has a finder provider. The National Volvodynia has a list of providers. The International Pelvic Pain Society has a list of providers. You just want to have
00:24:01
Speaker
find someone and you may just need to go to a Reddit subgroup or all the data support group on Facebook and others where people have lists of providers who really know how to examine the muscles. Now the other thing is that you may go to a women's health public for physical therapist to evaluate your muscles as well. Typically don't know how to do the evaluate the other things like hormonal causes. They may have an idea that maybe hormones or or nerves play a role.
00:24:28
Speaker
They're more focused on muscles. If that's what you have in your area, then that's certainly not a terrible place to start. Definitely. Well, thank you so much. This has been a huge amount of information. We will post the book and the website and make all this information available to people. Thanks for having me.