Hidden Causes of Pain ‘Down There’ with Dr. Andrew Goldstein (Ep 148)

Transcripts are auto-generated and may contain errors

Dr. Andrew Goldstein: [00:00:00] I always talk about my surgical successes at a year because often we have things that we need to do after, after the surgery is completely healed.

Dr. Linda Bluestein: Welcome back every bendy body to the Bendy Bodies podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility md. I'm so excited to chat today with Dr. Andrew Goldstein, the director of the Center for Vulval Vaginal Disorders in New York City and Washington DC. We know that so many women with EDS Mast Cell Activation Syndrome and POTS are impacted by pelvic pain and also peroneal pain.

This is gonna be a really important conversation because so often we're told that there's nothing that you can do that helps. So I really hope that you're gonna listen in and get lots of tips from today's [00:01:00] episode. Dr. Andrew Goldstein is a board certified OB GYN. He was on the faculty of the Johns Hopkins School of Medicine and is currently a clinical professor at the George Washington School of Medicine.

Dr. Goldstein is the past president of the International Society for the Study of Women's Sexual Health or is Dr. Goldstein has been a grant recipient of the National Vul Association and other private foundations. He is the founder and president of a 5 0 1 C3 Maryland nonprofit, the Gynecologic Cancers Research Foundation.

He was an associate editor of the Journal of Sexual Medicine, the Female Patient, and Current Sexual Health Reports. He has co-authored and co-edited eight books, reclaiming Desire, female Sexual Pain Disorders, evaluation and Management When Sex Hurts, management of Sexual Dysfunction, and Men and Women, an Interdisciplinary Approach, and the Textbook of Female Sexual Function and Dysfunction.

Dr. Goldstein is actively involved [00:02:00] in research and has published more than 170 peer reviewed articles, abstract and book chapters on female sexual dysfunction, sexual pain disorders like in Sclerosis, vulvodynia v Vestibulitis syndrome, or vestibular denia and cervical cancer. I'm so excited to have this conversation with Dr.

Goldens seeded today. As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Stick around until the very end so you don't miss any of our special hypermobility hacks. Let's get it going.

I am so excited to chat with Dr. Andrew Goldstein and Dr. Goldstein. I noticed that you have been interested, it looks like in AORs, Dan Lows for quite some time. 'cause you actually published a paper back in 2013 about, uh, two cases, two case presentations of profound labial edema as a present, as a presenting symptom of hypermobile type EDS.

And that was, that was quite some time ago. So, um, is this a subject that [00:03:00] you've been interested in for a while? 

Dr. Andrew Goldstein: Yeah, I mean, I, I guess, um, you know, I've been taking care of women with pelvic pain, vulvar pain, um, for, uh, more than 25 years now. Um, and when I started doing this, this thing called Nia was this black box where no one, uh, knew what it is and no one knew how to treat it.

And so for the last 25 plus years, I've been trying to figure out the causes of, of vulvodynia. And, um, and one of the things that I've, you know, found over the years is, uh, both the myofascial component and other, other components to the, to the vulvar pain and pelvic pain. And, uh, recognized again, even more than, uh, uh, a dozen years ago that, uh, hypermobility does play a role though.

I, I think I'm, uh. Amazed even more every day, how, uh, profoundly it affects, um, people with pelvic pain. [00:04:00] 

Dr. Linda Bluestein: And just so the listeners, uh, make sure we're all on the same page, can you define vulvodynia for us too? 

Dr. Andrew Goldstein: So the old term of vulvodynia is vulvar pain of a three month duration with no known cause. Um, but I, but I don't really use that, uh, definition very much because, um, uh, if there's no known cause that's, that, uh, just means that I'm not smart enough to figure it out yet.

Um, and so really as I sort of just said, I've spent about 25 plus years trying to figure out the many different causes of vulvar pain and vulvodynia. So it's pretty rare from someone to come into my office and I just say, you have vulvodynia. Um, usually I'll, you know, um, they'll come in saying, I've been told I have vulvodynia.

And, and I'll say, okay, but now let's figure out what, what's causing your vulvar pain? 

Dr. Linda Bluestein: Mm-hmm. 

Dr. Andrew Goldstein: Just like someone, if they come, you know, went to an orthopedic surgeon and they said, I have knee pain. Well, um, you know, I mean, the orthopedic surgeon's gonna try to figure out if they have, [00:05:00] um, arthritis or bursitis or torn ACL or, or, uh, torn MCL or pal or tendon or something like that.

And so that just, you know, we, uh, we figure out what the differential diagnosis is, what are, what are the potential causes of pain. And again, that's sort of been my, uh, life's work to try to figure out the, the different causes of pain. 

Dr. Linda Bluestein: And so many people have benefited from this work that you're doing.

'cause I feel like, so pain in the external genitalia is something that a lot of people have experienced. I know a lot of listeners are already going, yeah, I, I can relate to this. And they may have already seen a gynecologist who says, well, you have vulvodynia, but I mean. I've, I've heard this, we don't know what's causing it.

We really don't understand it. And so there's really not much offered in the way of, of resources. So I think this is such an important conversation to have and, and the work that you're doing is really, really important. So, um, so we thank you for that because there's, there's a lot of people who need this help.

For sure. So, so maybe we can [00:06:00] talk first about the myriad of ways that EDS, um, or, or the alos Danlos syndromes and or hypermobility spectrum disorders. For the purposes of this conversation, I don't think we're going to, you know, separate those necessarily. So we'll talk about, you know, the impacts of, of those conditions in general, and also mast cell activation syndrome and how those conditions can, um, lead to pelvic pain.

So, I know there's quite a few, so if you could, uh, give us some examples of some ways that those conditions can contribute to pelvic pain. 

Dr. Andrew Goldstein: Sure. So, um, I sort of break them up into sort of the three categories. Um, just the hypermobility itself and then the mast cell component. And the dysautonomia also is again, a, a, a big role that, um, that, that plays a role in pelvic pain.

And, um, just before I start, you know, I actually think that, um, that the biggest predictor of pelvic and vulvar pain, the biggest predictor. Is [00:07:00] is um, this triad of EDS really mast cell activation and, and dysautonomia. Um, and, uh, it really hasn't been talked about 'cause people don't know how to look for it.

And really, you know, it's, uh, very underdiagnosed. And until I started looking for it, I didn't know, you know, I, but people would, you know, mention there are other medical problems, you know, migraines or asthma. Or eczema or GERD or IBS. Mm-hmm. Um, or even endometriosis or interstitial cystitis. I sort of just put those aside a little bit.

Um, and you know, and I said, uh, you know, we're gonna focus on, um, on why you're here today instead of realizing that this is a big, big clue as to why they're here today. Um, and or their pots. So, and so, um, really for the last three or four years I've been digging really more and more into this and realizing that there are many ways.

So if we look at just the hypermobility part, one of [00:08:00] the things, as I'm sure you and your viewers are aware is that, um, core stabilization is a big issue. Mm-hmm. And so one way that if you don't have stable joints, and um, then one of the things is that the way you stabilize your core and your body is by tightening up your, your muscles.

And so one way people do this is they tighten up their pelvic floor muscles. The problem is, is if you have hypertonic or overactive pelvic floor muscles, what that does is it cuts down blood flow to the area that decrease in blood flow causes decrease in oxygen to both the muscles as well as the overlying mucosa or skin.

Mm-hmm. That decrease in oxygen leads to, um, the tissue living anaerobically, which then causes a buildup of, uh, uh, uh, lactic acid into the tissues, which causes a burning, throbbing rawness, just like an athlete, just like someone's been running a marathon for five years. So that's sort of the most basic way, and I think at [00:09:00] that was my sort of window into this world of just realizing that tight pelvic floor muscles can cause pain.

And one of the reasons people have tight pelvic floor muscles is because they're hypermobile. But that's sort of just the, the tip of the iceberg. Mm-hmm. A very important tip of the iceberg. Um, but just the tip, the, the, the second most, uh, common way is that people who have, um, uh, EDS and hypermobility frequently have injuries.

And one of the most common injuries is labral tears of the hip. And, um, and labral tears of the hip then cause, uh, instability in the hips. And the only way to stabilize the hips is to have the muscles of the hips go into spasm or to stabilize. And one of the muscles that goes into spasms is the ator and internist muscle and the, or turn muscle attaches to the pelvic floor.

So, um, and indeed they, you'll get hyperactivity or overactivity to the pelvic floor because of [00:10:00] hip instability because of, of, um, of EDS. Additionally, well, that when the ator and tarus muscle goes into spasm, it can compress a nerve that goes to the pelvic floor called the pudendal nerve. So the poal nerve, um, uh, has branches that go to the clitoris, to the rectum and the vulva and vagina.

And so you can actually get severe vulvar pain or, well, people used to call pudendal neuralgia only because of a hip injury. Um, and, and you may not even have profound hip pain, but, um, the, the hip is, uh, is not stable enough such that the arbitrator turn muscle is in spasm and it's compressing the denal nerve.

Not only do you get denal neuralgia from compression of the pudendal nerve, um, and the, and the symptoms. Again, clitoral pain, vulvar pain, vaginal pain, rectal pain. But you can also get something [00:11:00] call persistent general arousal disorder, um, or PGAD and PGAD is this symptoms of just unwanted arousal. Um, and again, that can be, uh, and it's very distressing and that can again be caused by a labral tear in the hip causing compression, then leading to compression of theEnd nerve.

Dr. Linda Bluestein: I'm sorry, I just wanna ask before you go on to the, the next thing, I just wanna ask a point of clarification. So are you saying with the obturator internist, um, being, you know, on, uh, hypertonic or being hyperactive, that, that you wouldn't maybe necessarily even feel that muscle being overactive? You might not feel pain in the hip, but all of the symptoms might actually be in the.

In the genital area? In the rectum, absolutely. The vagina, the interesting, okay. Okay. I, I apologize. I just wanted to kind of clarify that before, before we move on. No, that 

Dr. Andrew Goldstein: No, no. And, and, and, and, and it's difficult to get to convince a, an orthopedic surgeon to operate on someone's, [00:12:00] uh, hip, to fix their labral tear of their hip if they're not actually complaining of significant hip pain, but they actually above our pain.

Um mm-hmm. There are a couple ways you can prove it to them. One of the ways is you can do, um, uh, if you do a p nerve block and, and their pain goes away, and also you can even do botulinum toxin injections into the arbitrator and turn his muscle then, which is Botox. And if you do Botox injections into the arbitrator and turn, the pain goes away.

That often con can convince an orthopedic surgeon that that is the cause of the pain, but they're not, they're not. Trained for this, so it's hard for them, right? You know, they're, they're not trained to operate on a hip to fix the, the vaginal or vulvar pain, but Right. We've sort of, we have colleagues who, who actually will listen and do that.

Um, uh, the third sort of way the, the EDS is that, um, besides having injuries in the hips, you frequently have injuries to the lumbar spine. Um, so herniated [00:13:00] discs, annular tears are all much more common. People are hypermobile. Um, and, um, and what can happen is a herniated disc in the lumbar spine will actually, um, cause, can cause irritation of the nerve roots that actually make up the pudendal nerve.

So these are the sacral nerve roots, S two, S3 and S four. And so you actually can get, again, vulvar pain. Vaginal pain, pelvic pain because of a herniated disc. It is, you know, that that is much more common in people with, um, E-D-E-D-S and hypermobility. Um, additionally at, uh, when we're still, um, staying at the level of the spine, um, people who have EDS and hypermobility are more likely to have something called tarla of cysts or perineural cysts and these cysts, which, um, a lie along the, the [00:14:00] back of the spine can also impinge or irritate these sacral nerve roots, the S two, the S3, and S four nerve roots.

So that's another reason and why that hypermobility can, um, lead to, and that's just the hypermobility con, um, part C. Sort of continuing the hypermobility component is that people can also have venous insufficiency. And so, um, you can get something called pelvic congestion syndrome because the veins of the pelvis and there can be quite, uh, rich supply of the veins, of the pelvis.

They can get dilated. Um, and you'll can get a, just a, a, a fullness or a discomfort, just constant pressure, um, in the pelvis because of, um, of this venous, uh, insufficiency. Um, again, most likely, uh, you know, that's, [00:15:00] that's the EDS can lead to. And again, sort of what we're going back to what you mentioned in 2013 is that we realized you can even get very profound vulvar swelling.

Um, uh, with arousal because of this venous insufficiency. Guess I have one more other component just in the EDS and I know I told, I said I have a lot and I do have a lot. Yes. Um, uh, you can, um, you can get, uh, organ prolapse so the bladder can fall down, the rectum can come up and the uterus can fall down.

All of these things are much more likely to happen and occur with people who have EDS, um, hypermobility. 

Dr. Linda Bluestein: And before we move on to MCAS, if that's what we're gonna move on to, I, I wa I did make a note about Tarof cyst 'cause I wanted to make sure we talked about that. That's how I found out that I had EDS, I had a sacral tarof cyst and had all kinds of problems from it and ultimately had surgery for it [00:16:00] at, uh, and my neurosurgeon, Dr.

Frank Feigenbaum, I've interviewed him for this podcast. So we will link that episode also in the show notes so people can learn more about tar left cyst because that's something that I find so frustrating. People will get imaging done. And I dunno if you find this, but I find it so common where the radiologist might not even comment on the tar left cyst at all because as far as they're concerned, they're an incidental finding.

And if they do, they often put it in the findings but not in the impression. And so oftentimes the patient is only told what the impression was and if they don't actually go and look at the report, um, they may or may not know about that. Extra piece of information. I mean, I always, I 

Dr. Andrew Goldstein: always, specifically to the radiologist when I'm giving my, um, I don't just write lumbar MRI, I say mm-hmm.

Lumbar MRI will allow herniated discs, annular chairs, and tarlo cysts. Mm-hmm. Now, um, they often will not even, uh, will ignore annular tears as well. So an annular tear for, um, uh, your viewers is that if you look at, [00:17:00] uh, the discs between the vertebrae and the spine, the discs are sort of like jelly donuts.

They've got a tough outer core, and in the middle they have this liquid that act as a shock absorber. Now, um, what can happen is that outer core, um, can tear and that this liquid can seep out just like a jelly coming out of a jelly donut. And that can be, that, that liquid can be very irritating to the nerve roots.

So a very small annular tear can be, can profound neurologic symptoms and. Radiologists often won't even mention them. Mm-hmm. So it's very, it's very important. So that's when I, when I ask for these, uh, these specific imaging studies, it's really important to ask the, tell the radiologist what, what you should look for.

Dr. Linda Bluestein: Mm-hmm. 

Yeah. No, that's a really good point. We have a fair number of medical professionals that listen to this podcast. So every little, you know, pointer like that is much appreciated. So 

Dr. Andrew Goldstein: thank you. And [00:18:00] also, I guess I would say make sure you get as, as good a, uh, um, uh, MRI machine as possible. I think the, uh, you'd almost always want a three Tesla machine as opposed to 1.5 Tesla.

You know? Um, you really need a good, um, visualization, um, and good resolution to see some of these small ular tears. 

Dr. Linda Bluestein: Mm-hmm. Sure. And that's something that. You know, you, you probably know local to you where to refer your patients to, but if a, if patients are listening to this, is that something that they can call the imaging center and ask what the magnet just say are, or 

Dr. Andrew Goldstein: your, or your, you know, or is your machine a three T or three Tesla machine?

Mm-hmm. Okay. Not, not the car. That's the strength of the magnet. Right? Right. So that's, at least for right now, these are the ones I can think about that, um, uh, uh, oh, one more. I lied. Okay. Um, herniations. So, um, hernias can be, uh, a profound cause of, of pelvic pain. Um, [00:19:00] and, and people who have EDS, um, can have many.

Many hernias. I've had patients who have 13 or 14 different abdominal wall arbitrator and internist hernias. And, um, and these hernias allow, uh, can cause pain. They're very often can be very insidious pain. You can't figure out where it is, um, because it's not just a denal nerve, but they're genital femoral nerve, um, ileal, inguinal nerves.

All of these nerves can also be, um, uh, ator, inter nerve, uh, uh, uh, ator nerve. All of these nerves can be irritated if there's a hernia, um, there as well. So, good imaging, but, but not just good imaging, but it's really, um, an awareness that these things may be the, may be the issues. 'cause no one's gonna, unfortunately, there's no one who's gonna go, uh, you know, the radiologist's gonna say, well, this may be the cause of your pain or the, uh, [00:20:00] the other, the general surgeon may not know that these, these hernias may be the cause of the pain.

So you really have to have a very good understanding of all the potential causes of the pain. Um, and, and, and so you can figure out what it is, and then it's, then it's so peeling away layers of an onion, it's often a lot of nerve blocks to figure out, you know, injecting some anesthetic in these areas and say, okay, does the pain go away or not?

Um, even if it just goes away for, for an hour or two. But that's where the, where it is. And so we just, we, we do rely, I rely a lot on, um, uh, either physiatrist or interventional radiologists, um, to do nerve blocks with me, um, to help figure out the location of the pain because unfortunately, a lot of people have more than one of these things.

If they have EDS or hypermobility, they will have the herniated discs and they will have the labral tears and they'll have the, um, taral cysts, and then here's, you know, like, okay, now that we have all these [00:21:00] possibilities, what you can, what can you do? The other way we can try to figure this out besides nerve blocks is something called neuro genital testing.

And so we're looking at nerve conduction, not just going down to, to the vulva and the perineum and the, but you're also looking at nerves going down to the legs. Feet. And, um, if there's abnormal nerve conduction going to both the, the vulva, um, the per perineum as well as down the legs, then it's more likely that the nerves are being impinged upon in the spine.

However, if you just have it going on one of those two things, it's more likely to be more peripheral than the spine. So we're always trying to triangulate, um, as to where the potential, um, uh, problem is. 

Dr. Linda Bluestein: Is that testing that you do in your office or, uh, do you refer them? That's something I, okay. 

Dr. Andrew Goldstein: Yeah, I have that in my office.

Um, uh, uh, another colleague by the name of, uh, Irwin Goldstein, no [00:22:00] relation. Um, we've written nine books together, or not, I don't five books together, but no relation. Um, uh, Irwin Goldstein's on the other coast, he's in San Diego and he also does neuro genital testing. Um, to my knowledge, we're really the only two people in the, uh, in the US who are doing it.

Dr. Linda Bluestein: And I've also interviewed him for the podcast. So there he goes. There go. And I was, and I was wondering if you were related, to be 

Dr. Andrew Goldstein: honest. Nope. So, no, I, I appreciate it. Makes it a bit more complicated. He has a son, Andrew, so, um, no way. Oh my God. Yeah. So, so that's funny. 

Dr. Linda Bluestein: That's funny. So, um, I will link that episode as well 'cause we, we, we covered very different topics, but, um, you know, people listening to this are probably gonna be interested in listening to that episode, uh, as well.

You, you both have done such amazing, amazing work. Okay, that's great information. So, okay, so should we move on to MCAS or were the other mca? Sure. 

Dr. Andrew Goldstein: Yeah. So, so mast cells are, you know, uh, I guess the evil white blood cell. Um, and, um, and obviously they have a, a huge role in, in [00:23:00] inflammation. Um, and, uh. So one of the, um, common, more common causes of, of vulva or vulvar pain is something called neuro proliferation.

And neuro proliferation is when you get too many nerve endings in the tissue. And the reason you get too many nerve endings in the tissue, uh, one way is because of a severe allergic reaction or a severe chronic infection. 

Dr. Linda Bluestein: Mm. 

Dr. Andrew Goldstein: And these things are mediated by mast cells and mast cells. Um, and, uh, all their glory will, if they stay activated, will, uh, secrete something called nerve growth factor.

A nerve growth factor actually causes or allows the sprouting of new nerve endings. Um, and you can get a huge increase in the, um, number of nerve endings. Um, unfortunately, the type of nerve endings that grow are [00:24:00] called caf nociceptors, and those nerve endings are responsible for the sensations of burning rawness and cutting.

So you can get a huge increase in density of nerve endings. To make matters even worse, these mast cells will secrete something called heparinase. Heparinase is, um, allows those nerve endings to actually, um, pierce the bottom layer of the skin. So nerve endings are supposed to stop at what is known as the basement membrane, which is the bottomless layer of the skin, and it's actually what separates the skin from the fat.

So the nerve ending should stop here, but what happens is now you have all these new nerve endings and that are growing and growing and growing, even whe you know, so now you have too many nerve endings and now they're too superficial. 

Dr. Linda Bluestein: Mm-hmm. 

Dr. Andrew Goldstein: And so this, um, so you get this, uh, condition called, um, neuro Proliferative Vestibular dine.

It's a mouthful, [00:25:00] but basically they have too many nerve endings in the entrance of the vagina called the vestibule. And so they have profound pain, um, uh, uh, penetration and attempted penetration, um, during either tampon insertion or intercourse, or just even when there's pressure applied to the area with the underwear or leggings.

So, um, mast cells, um, can, uh, can cause, uh, some people have mast cell activation can cause that. Additionally, um, a similar condition in the bladder called interstitial cystitis, painful bladder syndrome, um, is also mast cell mediated. So you get an ir, uh, severe chronic inflammation and the irritation of the bladder lining, um, again, mast cell mediated.

Um, and that can happen. Um, it can happen, for example, if someone has a long-term urinary tract infection or, and they can get, uh, hypersensitized to even things such as [00:26:00] caffeine or alcohol or citrus or acid in the urine. So that's another profound way that mast cells cause pelvic pain. Additionally, there's a condition called endometriosis in which the lining of the uterus, the endometrium grows outside the uterine cavity, but um, out in the pelvic cavity.

And that can cause profound, um, uh, pain, um, um, very painful periods. It can cross scarring, it can lead to infertility. Um, and that if you actually biopsy the, uh, the lesions with it, that shows the endometriosis, not only do you have the endometrium that abnormal, um, uh, that's supposed to be just in the lining of the uterus, but you also have too many mast cells and you have too many nerve endings.

So it's the same pathology, whether it's endometriosis or neuro [00:27:00] proliferative, vestibular dini, or interstitial cystitis, painful bladder syndrome. So all of these things Now, um, we also recognize that, um, IBS often can be mast cell linked mm-hmm. As the, as sibo and when you have chronic abdominal pain because of, uh, GI related issues that can also, um, lead to, uh, chronic pelvic pain.

So, um, so, um, the pretty, you know, the bad actors, these mast cells are really a big, big, big player. Um, when it comes to pelvic pain. Um, aside from, um, again, the hyperemic, uh, components that we just talked about. 

Dr. Linda Bluestein: So you're finding that people who have SIBO or small intestinal bacterial overgrowth, in addition to having abdominal pain from that, that pelvic pain is also a common finding.

Dr. Andrew Goldstein: Yes. Interesting. And again, but it may be, it may be [00:28:00] not just the SIBO itself, but it's because they have mast cell activation. Mm-hmm. And therefore they had, can have, um, these other, these other problems as well. 

Dr. Linda Bluestein: Mm-hmm. Yeah. And we know that people with these problems are, well, and, and we didn't even talk about POTS yet, or, uh, no, we're, yeah.

Which, which, which is of course one of the forms of denomi. Mm-hmm. Um, so this is, I think the other thing that's so, um, frustrating for people is, you know, so many of these things have such overlap and can cause mm-hmm. All three of those things Right. Can contribute to your risk of something like sibo. So it's, it's really a complex situation pretty quickly.

So, uh, are there some things that we need to be aware of then with dysautonomia, which again, we know POTS or postural orthostatic tachycardia syndrome is one of the, um, you know, things that we might wanna consider one of the categories or one of the diagnoses that fall under the category of dysautonomia or dysfunction of the autonomic nervous system.

Dr. Andrew Goldstein: So that's, yes. So, um, yeah, again, sort of, I guess the, the terrible [00:29:00] triad of this autonoma does also cause pelvic pain. So, um, not only is the pudendal nerve going to the vulva and the vagina, there's the pelvic nerve and the pelvic nerve or the autonomic nerves, um, that go to, um, uh, the uterus, the cervix mm-hmm.

And all of the glands of the, of the vulva and vagina. And so, um, uh, if you have dysautonomia, you can actually, uh, pain associated with this auto autonoma as well. So you can have glandular dysfunction as well as deeper pelvic pain. Um, because, so it's, it's less of what we call somatic pain. So you can't exactly put your finger and say it hurts right here.

It's just a diffuse. Unpleasantness. Um, and it can be a profound unpleasantness, and often that's attributed purely to endometriosis. And then people say, okay, [00:30:00] if you don't have endometriosis, we don't know what's causing your, um, your pelvic pain. Mm-hmm. Um, but often it, uh, it could be related to, um, uh, the pelvic nerve.

And so the dysautonomia is another component of this triad that, that, that leads to, to, uh, some role in pelvic pain. 

Dr. Linda Bluestein: Okay. Well, we're gonna take a quick break and when we come back, we are going to talk about treatment options, prognosis, uh, some, some of the different things that Dr. Goldstein has found most effective.

So we are going to take a quick break and we'll be right back.

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Okay, we're back with Dr. Goldstein. So, uh, can you start out now by telling us in terms of resources, obviously you have your practice and I know, like you said, it's a little confusing. Dr. Irwin Goldstein is, is on the other coast, is in San Diego. Um, but not everyone can get to, to you or to him. Um, what resources are there for women to figure out what the cause is of their pelvic pain or their pain with sex?

Dr. Andrew Goldstein: Well, actually together, we did write a book, uh, [00:32:00] Irwin and I, um, called, uh, when Sex Hurts. Um, and it's actually in, uh, the, uh, second edition was released just, uh, about a year ago. Um, a hundred percent of the proceeds of that book go to the National Vini Association. Hmm. Um, so, uh, we've never made a nick on this stuff.

It all goes a hundred percent to the National Aldini Association. Um, so, uh, that's available. I'm available on Amazon, um, called When Exert. Mm-hmm. Um, it's really, it's really one of the, the best things I've, I've, I've done because I really do think it's a really good resource. Mm-hmm. Um, uh, I guess I would say that if there's any deficiency in the book, it doesn't talk enough about EDS.

Um, it certainly mentions it and hypermobility, but, uh, even when we wrote this 18 months ago, I guess I, I, um, I just didn't understand the. And in a weird way, the richness and, and the mm-hmm. That, that, that these, these, uh, this [00:33:00] triad affects pelvic pain, I think I realize more and more every day. Um, so that's one resource.

Um, we do have a textbook for professionals Mm. Um, called Female Sexual Pain Disorders. And the second edition of that came out a few years ago as well. And a hundred percent of those proceeds, um, uh, are donated to the International Society for the Study of Women's Sexual Health, or Is Wish. Mm. Wow. So that's, so that's, um, so those are some, um, uh, resources, online resources.

I have a website called Vulval dia.com. Mm-hmm. And there's, um, uh, a lot of resources. We, all our published work goes on that website. Um, and so that's, that's quite useful. Um, and, um, resources to help find patients, um, uh, the ishish to the International Society for the Study of Women's sexual health. So [00:34:00] ish.org, um, has, uh, a lot of information for patients as well as find a provider.

Um, a way to find people who are, who are, uh, and if you look for someone who's an ish fellow, they've certainly heard about this stuff before. They may not be experts, but they're certainly trying to become experts and care about this. Um, and, um, uh, so those are probably the, uh, the biggest resources. I probably will think of a couple others in a few minutes, but those are, but those are some, some good places to start.

Dr. Linda Bluestein: Great. And um, I actually just spoke at the ISHISH conference. It was my first ISHISH conference. Oh. So it was really fun in Atlanta, uh, last month, a couple months ago. Mm-hmm. And, uh, so what a great organization and that's wonderful that you've published these books and are donating a hundred percent of the proceeds.

'cause writing a book is just an incredible amount of work. So that's a amazing that you've, that you've done that. Um, so yeah, those are great resources and we'll be sure to link all of those things in the show notes so people can [00:35:00] find them really easily. Um, one thing that a lot of people have been referred to, including myself, um, as someone who has the, at least some component of each thing of the, the triad to some, to some degree, a lot of us have been referred to pelvic floor physical therapy.

And for me I found it super, super helpful. But I know some people have not found it as helpful. Do you have any thoughts as to why it's sometimes not as helpful as other times? 

Dr. Andrew Goldstein: Absolutely. So a couple of things. Um, first of all, when muscles are hypertonic, they're not just tight. They're tight and short.

Mm-hmm. Okay. And again, that leads to a profound decrease in blood flow. Just a 10% increase in muscle tone will cause a decrease in blood flow of 50%. 

Dr. Linda Bluestein: Hmm. 

Dr. Andrew Goldstein: Again, that profound decrease in blood flow causes decrease in oxygen, hypoxia, lack of oxygen. And it's not just actually the, the buildup of lactic acid, there's something called hypoxic inflammatory response.

So actually decrease in oxygen leads to inflammation as [00:36:00] well. Um, which also activates your mast cells, of course, to make things worse. Okay. So the muscles are not just tight, they're tight and short. Mm-hmm. The only way to get, um, blood flow back to the muscles and therefore oxygen back to the muscles is two things have to happen.

The muscles have to both relax and get back to their normal length. Hmm. The problem is, is that if you just go to physical therapy, what they're doing is they're stretching a tight muscle. It's stretching a rubber band and all. So what will happen is people may get loose during physical therapy, but by the time they're back next week, they're tight again because we didn't help the physical.

We really need to help the physical therapist by relaxing the muscles. The way I do that, two main types of muscle relaxants I use are suppositories of something called diazepam, which is Valium. 

Dr. Linda Bluestein: Mm-hmm. 

Dr. Andrew Goldstein: Sometimes if people can't tolerate it, we use a muscle relaxant called Baclofen, [00:37:00] although I feel that the diazepam works better.

Mm-hmm. But the big gun, the thing that works really the best are, is botulinum toxin injections. So Botox injections, um, or any type of dys, poor or, um, or, uh, or other, uh, juva, it doesn't matter which, what, which toxin mm-hmm. Which, which name grand. But basically, um, botulinum toxin injections, if done correctly, the right dose, um, really can, um, uh, profoundly help a pelvic floor physical therapist.

So that's number one. That's, so that's it. That's, that's one reason why sort of pelvic floor physical therapy fails is we're not helping the pelvic floor physical therapist. The second thing is that, uh, it often fails is because they're not addressing the structural problems. So, um, you may have a leg length discrepancy or they really often, uh, you know, miss the labral tears.

Um, [00:38:00] uh, they don't have a strong ortho background. The physical therapist, or, I'm just not thinking, because again, if someone's not complaining of real bad hip pain, people may not be looking for it. Sure. Um, so structural problems, um, si joint instability. Mm-hmm. Um, uh, again, so common with EDS, um, if these aren't addressed, then it's two steps forward, one in seven a steps back.

Dr. Linda Bluestein: Mm-hmm. So, 

Dr. Andrew Goldstein: um. Uh, so that's that. Um, there is, you know, obviously we, we've, we've come a, a long, long, long way when it comes to pelvic floor, uh, physiotherapy. I mean, 25 years ago there were, you know, maybe a city would have one or two. Mm-hmm. People, now, you know, I work in New York City there, they're probably 150 or 200 pelvic for a physiotherapist, physical therapist.

But there's a, [00:39:00] there's sort of a wide range and, and experience levels. Mm-hmm. And, and, and so that may, um, you know, often people say, well, you know, I went to pelvic floor physical therapy. And I'll say, well, how much, like internal work? They go, oh, they never did internal work, you know? Mm-hmm. Um, so, or you know, so, or they maybe did five minutes on the first evaluation and that was it.

Type of things like that. So there's a range of, of, of, of, of, of. Sort of of experience levels with, with pelvic floor physical therapy. So I guess that, that, those are some of the reasons why, um, uh, physical therapy doesn't work even though it's sort of the right thing to do. 

Dr. Linda Bluestein: Mm-hmm. Mm-hmm. And when it comes to doing Botox or, you know, some other, uh, neurotoxin and you're relaxing the muscles, what about if the person does have hip instability or si joint instability?

Um, are you potentially putting them at risk of more instability then if the [00:40:00] pelvic floor is kind of trying to hold on and keep that pelvis stable? 

Dr. Andrew Goldstein: So again, it's, you have very, you have to be very. Uh, uh, localized as to which muscles you're, you're doing, you're not mm-hmm. Do a global, so I actually, especially with hip in disability, I'll stay far away from the arbitrator internist.

Mm-hmm. Unless you course that they have adenal nerve pain. 'cause then you actually do want to, um, uh, you, you do want to relax the arbitrator, turn it so that their pain can go away, but then with the understanding that they're really gonna have to stabilize their hips somehow, you know? Mm-hmm. Whether that be, um, physical therapy or even surgery if necessary.

Um, but, uh, you're, the, the, the benefit of, of, uh, of these toxins are that they stay where you inject them. There's not much bleeding. So if I'm. Uh, worried about, uh, pain, uh, let's say, uh, pain with intercourse. [00:41:00] Pain upon penetration. I can really localize the muscles right at the entrance, right? Mm-hmm. Uh, that, that are causing pain and not cause um, uh, instability of the whole pelvic floor.

Dr. Linda Bluestein: Mm-hmm. Okay. And if somebody's going to a pelvic floor physical therapist who says, you know, I can do dry needling in that area, 'cause of course they can't inject Botox or anything like that. But, um, what is your opinion about doing dry needling of the pelvic floor? 

Dr. Andrew Goldstein: Well, I mean, uh, dry needling and, and, and dream and trigger point injections are, they're okay.

The muscles will, um, they will, uh, relax for a day or two, or.

Nice thing about botulinum toxin will last three or four months. Mm-hmm. So, um, I mean, if you're, if you're getting a needle in something, I would rather it last three or four months than, you know, three or four days. Mm-hmm. Um, uh, there is a cost factor to it for, and some insurances will not cover it. Um, but, [00:42:00] um, there is it, I I, it, it has, I've actually, um, been, have been doing botulinum toxin injections of the pelvic floor since, um, uh, 2004.

So I've Oh, wow. I've, I've, I've been, wow. I've, I've injected more than 1500 women. Um, and it is really, um, if I had to give that up, I would probably, you know, I dunno if I could practice medicine. Um, wow. Because it, it's, it's, it's such a, such a, um, a key tool in my tool belt. Mm-hmm. Um, um, for pelvic pain.

Dr. Linda Bluestein: Okay. So. So that treatment versus dry needling, and then you can probably even go down one other level to do like myofascial release, but that's gonna be probably even more short-lived. Right? So that's maybe why some people have, have had that done on the pelvic floor, and it may be just will give some relief for a period of a few hours if you're lucky, 

Dr. Andrew Goldstein: right?

I mean, again, but the, the thing about the myofascial [00:43:00] release though is that it is lengthening the muscles. So that is sort of essential. But again, are you stretching a, a rubber band or are you stretching a rubber band that you've cut so that it actually can sort of go out to get back to its normal functional length?

I also do think that some, um, uh, it's important, I, I understand strength is important, but depending on what, um, first you have to work on relaxation. Um, because I think sometimes physical therapists jump into strengthening too. We gotta relieve the pain first. 

Dr. Linda Bluestein: Mm-hmm. 

Dr. Andrew Goldstein: Yeah. Before we can get, before we can regain function, we've gotta actually get rid of pain.

Um, and so I think sometimes, uh, physical therapists are, you know, or people are limited that they only can have eight sessions or six sessions. And so there the, [00:44:00] the desire to do so much all in a very short amount of time gets people to go, you know, uh, steps A to D to F you know, without sort of getting B and C, which is get rid of the pain.

Dr. Linda Bluestein: So you've mentioned, uh, Botox as a treatment option, and then in some cases for some people, you know, maybe they do need surgical repair of a, you know, a hernia or a labral tear in the hip or something like that. What other treatment options are possibilities for people? Of course, it depends on what the cause is, but what are some of the other things that, um, you have found helpful in your practice?

Dr. Andrew Goldstein: Nerve blocks can also be incredibly, uh, beneficial depending on where the, uh, you know, what, what if it's a, a true neurologic injury. So nerve blocks can be profoundly, um, impactful in a very good way. Um, uh, we are doing a study right now, um, on shockwave and how shockwave can augment pelvic floor physical therapy.

[00:45:00] Um, it's a new modality. We know it's very safe. Um, uh, anecdotally, um, there are, um, many pelvic floor physical therapists, uh, physical therapists who actually feel that it, that it is quite beneficial. Um, it does. Um, I mean, we do know that shockwave does increase blood flow, cuts down inflammation. It, it also, um, brings, um, stem cells to that area.

Mm-hmm. So, um, so there really could be some really good regenerative and, and, uh, be, uh, beneficial properties to shockwave. And so we're doing a clinical trial on that right now. Um, just augment pelvic floor physical therapy. Mm-hmm. Not to supplant pelvic floor physical. Other treatments. I mean, some, uh, you know, we do, uh, again, I'm not a mast cell specialist, but, uh, I, I, I certainly understand that using both, uh, antihistamines, H one and H two blockers, as [00:46:00] well as mast cell stabilizers, chroma, and sodium, um, uh, uh, montelukast, uh, Singulair, um, uh, keto, um, are all, um, are, and other types of antihistamines are, um, very important.

Um, and to cut down an inflammation throughout the whole body, um, especially if I do think it's a mast cell mediated process. And so, um, I, I make liberal use of those as well. 

Dr. Linda Bluestein: I found when I prescribe those to patients, sometimes they're not necessarily looking for this, but they do find an improvement in their bladder pain.

Mm-hmm. Or, you know, their peroneal pain of what, of whatever sort it might be. Pelvic pain. Um, have you ever tried or recommended that you know, somebody try using either chroma and sodium or kein um, topically on, on the vulva? 

Dr. Andrew Goldstein: Uh, I have not. Uh, well, there, there was a, there was a study of crumlin sodium, a topical stu [00:47:00] uh, uh, a topical preparation.

Um, the study was done by Palm or Jesse, maybe 20 years ago. Oh, wow. It did not, actually, it did not show benefit, but, um, this was sort of in the early days of vulvodynia research, so all vulvodynia was this black box. So would, would it work if you didn't treat, you know, if it was, if you sort of narrowed down the people who had more of an inflammatory vestibular demia.

Instead of a vestibular demia because of hormonal factors or because of too many nerve vendings. So I haven't, so I, I don't use it, uh, typically to, uh, topically. I actually tend to try to stay away from topical preparations because, um, uh, they can be profe very irritating. It, it sort of. Uh, there are other vulvar specialists out there who are compounding, [00:48:00] um, compounds of gabapentin and amitriptyline and ketamine and, um, and crumlin and baclofen, and throwing them all, um, you know, at people like the kitchen, like doing like every, all the, all the tools of the kitchen and, you know, all at one.

And I've just found in general that those are incredibly irritating and, uh, I have not found much success in these preparations. Others people have, I don't exactly know why I, I've failed and they've had success, but, um. Uh, I, in general, I try to, especially people who have, uh, uh, such topical allergy allergens, you know, people are dermatographic.

Mm-hmm. You know, I stay away. Mm-hmm. Basic V care measures are also just really important. People are exposed to so many chemicals on the vulva. 

Dr. Linda Bluestein: Mm-hmm. 

Dr. Andrew Goldstein: Um, uh, and they don't realize it. Every, [00:49:00] uh, every soap, you know, dove soap. 99.44% pure s 12 different things in it. Um, uh, toilet paper, you know, uh, if it's soft and it's smells good.

That's, that's, that's not a, a, trees are not soft and smell good, you know, that's just, that's just lots of chemicals. Um, so we, we really tell people to, to focus on, um, hypoallergenic toilet paper, hyperallergenic, menstrual pads, um, stay away from soaps. Um. Uh, if you can hand wash any type of clothing that will touch the vulva mm-hmm.

Um, I, I, uh, practice in New York City and, and the New York City as, as, as other places, but New York City people, uh, uh, an apartment building will share a washing machine or share several washing machines. And people say, well, I, I use my all free and clear. I use my [00:50:00] draft and therefore I'm using hypoallergenic soap.

But you're using the soap that the last 30 people, um, also used in that washing machine. 

Dr. Linda Bluestein: Mm-hmm. 

Dr. Andrew Goldstein: Um, so you really, um. Uh, you know, really have to be careful about, about allergens and potential irritants. I find that there's sort of a profound, um, increase in vulvar pain when people go off to college. And that's because they've had their, they've had very sensitive skin and that, but they're, but they've known, their moms have known about it for a long time.

And so the, they've sort of laundry's all been done in one machine with sort of hypo and then they all go off to a dormitory and you share the laundry, the machine with the other of your classmates and, um, you get so irritated and itchy and, and, um, and you'll use this, any toilet paper or any soap that's lying around and that can really, um, cause some problems.

Dr. Linda Bluestein: I, I feel like you just reported my whole [00:51:00] childhood, right, right here. 'cause my, my mother went through this process with me and figuring out like, no, you, you just cannot. I had sensitivity to so many different things and, um, definitely have discovered over the years, you know, kind of what you were saying about.

Uh, you know, ex chemical exposure and also even simple things sometimes, like tight pants sitting for long periods of time. Right. That can also, um, increase the, the risk of 

Dr. Andrew Goldstein: having more problems. Yeah. Put, putting pressure on the p nerves and things. Yep. So sitting, so these are all, so it's a complicated, I guess, um, uh, uh, the, uh, we're engineered with a lot of, a lot of, a lot of parts all in a very small area in the pelvis.

Mm-hmm. And so, um, reproductive and defacatory and urinary, um, and our, and our core stabilization. And so all of these things happened, um, all in a very small area and, and, and can get profoundly impacted by all the things we've talked [00:52:00] about. 

Dr. Linda Bluestein: Okay.

For some listener questions, and I have a couple that before we wrap up here that I wanted to try to, uh, get to. So the first person asked about, uh, the interaction between end endometriosis and MCAS and EDS and what are your thoughts on treatment for true diagnosed vestibular demia. For hypermobile folks, if dermatologic conditions, hormone imbalance, yeast, et cetera, have all been rule out and the only findings are chronic inflammation and persistent pain, is surgery such as a vestibulectomy relay the best option?

Do the success, do the high success rates of surgery apply to the hypermobile population? Does vulva or vaginal tissue that is hypermobile heal well enough to tolerate tissue removal and recovery in this region? 

Dr. Andrew Goldstein: Luckily, I actually think it does. Um, I, I've actually, I I, I've looked at this and, and, um, and have not found any significant difference in success rates in the [00:53:00] vest tubules that I do.

Um, people who have hypermobility. I mean, I was doing vestibules for, uh, you know, 15 plus years without even recognizing, um, that people were hypermobile and we had very good success rates back then. So, I mean, that's, that's good. It wasn't like we were, um, um, uh, but, but I'm very, and this is very important.

I'm very, very, very selective as to who I do a, the ectomy on. Mm-hmm. Um, it really has to be pain com just to localize to the vestibule. Um, it can, and it has to be pain throughout the entire vestibule, not just in the back part of the vestibule. And I am, I am incredibly careful to make sure that people don't, do not have components of pral neuralgia.

Um, because all of these things will, uh, severely impact the, the success rates of, um, of vestibular. Now, pelvic flare dysfunction [00:54:00] itself does not, um, um, impact the success of Vestibulectomy. It just needs to be addressed. After, after, um, the surgery is recovered. So it, um, it realized that the vestibulectomy is not necessarily the end of the journey.

It's the, the biggest mountain to overcome. But it doesn't mean that right? When you're, when you're, when you fix, you know, that you, you're, you're recover, recovered for that. That means you're, you're perfect and you're gonna be okay. Um, I always talk about my surgical successes at a year because mm-hmm often we have things that we need to do after, after the surgery is completely healed.

Um, and, um, but people do heal well, um, with EDS from Vestibulectomy if it's done well, um, by someone who really has a lot of experience. 

Dr. Linda Bluestein: And we discussed Vestibulectomy also with Dr. Irwin Goldstein, but I probably should have prefaced this by, uh, you, you've [00:55:00] described earlier what the vestibule is, but I think this is something especially without, um, you know, we're recording this audio and, and video right now, but we're not showing like any slides or anything.

Maybe we can find one to, to insert right here. But can you explain again what the vestibule is so that people, and also what a vestibulectomy is? 

Dr. Andrew Goldstein: Sure. So the vestibule is the, is the, uh, rim of tissue that's right at the entrance of the vagina. Um, and, uh, so it's, uh, it's inside. Um, the labium miner are the small lips.

And it's outside, um, the hymenal ring. So it's just about this far in, so about, about an inch in, right at the center. So, um, and the urethra goes right into the center of this tissue. So it's, it's a horseshoe shaped area of tissue. It's the amount of tissue basically that's on the back of your thumb, so about two square centimeters, or think of a postage [00:56:00] stamp.

Mm-hmm. Um, but the amount of a postage stamp, but that's, that's basically a, or horse show horseshoe. And it's very unique tissue. Um, it's different embryologically than the rest of the vulva or vagina, and it acts differently hormonally, um, and it, and it reacts differently to any allergic or, um, or infectious insult.

So, and that's why the majority of people who have vulva dine are vulvar pain, actually have vestibular dine, which is just pain confined to the vestibule. 

Dr. Linda Bluestein: Hmm. 

Dr. Andrew Goldstein: A vestibulectomy is to remove the top layer of this skin of the vestibule, about three millimeters deep. Or if you think about three millimeters, think about like 10 sheets of paper together, and that's about three millimeters.

So you're taking off this, this top layer, very thin layer, and in that top three millimeters are where all those, uh, nerve endings are. Mm-hmm. And so you're [00:57:00] just removing that top layer and then replacing that top layer with, uh, uh, tissue that comes from the vagina. So we actually pull the vagina down, much like we're stretching a turtleneck, I always say just like this.

Mm-hmm. We're stretching it about this far, about a, about a centimeter and a half to replace the area that we, that we removed. I've been doing them. I was taught how to do a vesti like me by my mentor, a man named Stan Marinoff, um, uh, and, uh, who, um, uh, he had done about 300 of them. Um, uh, and, uh, I have, uh, done over, um, close to, uh, 1300 of these procedures over the last 27 years.

Wow. But it's still, I used to do a lot more, you know, I used to do many more, uh, because we didn't really have much, uh, treatment, uh, treat, you know, we way back when again, it was a black box and sort of the only thing we knew was [00:58:00] to, to, to cut out some tissue. But now when we've been able to figure out what, who, who's having inflammation and who has hormonal component and who has all these other things, we're doing many, many less tubules.

Dr. Linda Bluestein: And, and what are outcomes like at that year, mark, would you say? 

Dr. Andrew Goldstein: So, so now I'm gonna give you my numbers and I have to say that that's, I, I don't think I can really give you the, um, uh, you know, the numbers for just anyone out there. I, I will tell you that we've, we've, uh, contacted over 200 women at least a year after surgery, and there's a 97% patient satisfaction rate.

Wow. So it's sort of the, it's the, the Yelp success rate. So basically, and these are independent researchers, it's not us saying, you know, it's not me asking them, you know, did you get better? But it's really independent researchers. And so we ask women, knowing the results of your surgery and the discomforts of your surgery, would you do it again?

And would you recommend it to another woman with similar complaints? And 97% [00:59:00] of women say they would do it again and would recommend surgery. Wow. So that's incredibly high. Um, but again, I'm very, very cautious as to who I do surgery. Um, now one year after surgery, 58% of women. Um, have, uh, no pain within intercourse.

Zero pain within intercourse provided they use a lubricant if necessary. An additional 30% of women have minimal discomfort, but you can't say zero discomfort. Um, um, so that's 88% of people have, um, have, uh, minimal or zero pain within intercourse. Um, and even of those 12% left still, three quarters of those women are nine out of the 12% are very happy that they had surgery.

'cause their pain is still only mild to moderate and it's nowhere near as bad. So again, the vast, vast majority of people that we do a vestibulectomy on, um, are very, very happy they had surgery. Now I will say that [01:00:00] only 7% of my patients who walked into my office in a year are vestibulectomy candidates.

Sure. So I evaluated over five. Um. Uh, a hundred new pelvic pain, vulvar pain patients a year. And I really am doing, you know, less than less, far less than 40 vestibules a, a year. Um, so about 7% of people are candidates. And so I'm very, uh, so, um, so I think that success rates are, um, are based on, we really are a technique.

Mm-hmm. But the success of surgery is made even before you walk into the operating room, which, which is knowing who you should operate on. 

Dr. Linda Bluestein: Yeah, absolutely. I'm married to a urologist, by the way, and, uh, yeah. Patient selection is everything. So yes, definitely. The, 

Dr. Andrew Goldstein: the success of, of, again, is, is, is, is made before you walk, you know, or, or you, certainly you could, you're, the failure can be made before you walk into the operating.

If you're operating on the [01:01:00] wrong, on the wrong person. Um, first do no harm. Um, and so we really, um, very selective. Um, I'm very. Um, uh, uh, very cautious to really make sure, now that's not to say that you have to try 20 other things first. Mm-hmm. That I disagree with that that vestibular me is the last resort.

It is not. Mm, it is the, it can be the first treatment, um, uh, if it's the correct diagnosis. 

Dr. Linda Bluestein: Mm-hmm. 

Dr. Andrew Goldstein: Um, but, um, uh, so it's, it's really all about the, uh, and the, and the correct diagnosis. Four of vestibulectomy is something called neuro proliferative vestibular only having too many nerve endings. 

Dr. Linda Bluestein: Mm-hmm. 

Dr. Andrew Goldstein: And, and if you don't have, if you have pain only in the back, part of the best real, that's not the cause of your pain.

Mm-hmm. So I find that a lot of people have had vest tubules for the wrong reason, and they still have pain because the, the pain in the back part is where the muscles attach. 

Dr. Linda Bluestein: Hmm. 

Dr. Andrew Goldstein: And so you can still get rid of the mucosal on top and you're still [01:02:00] having pain because the muscles are still hypertonic underneath.

Dr. Linda Bluestein: Right. Okay. And I wanna ask one other quick listener a question before we wrap up. And this person asked about lichen sclerosis and lichen planus, and I don't know if I pronounce that right or not. Um, and how you can tell the difference and what to do if standard steroids don't work. 

Dr. Andrew Goldstein: So, um, uh, lipos sclerosis and, uh, ly planets are both autoimmune, um, inflammatory skin diseases on the vulva.

Um, uh, the, the difference between, uh, so they're very, um, they're, I would say they're closer than cos they're, they're half, they're half siblings. Um, uh, the, the difference and you, and to make things even matters, uh, more complicated, they can coexist. Mm. Um, one of the ways to know the real difference though, is that a lichen sclerosis does not go in the vagina, whereas lichen planus.

Does, um, lichen planets usually causes more erosions, um, which is sort of the [01:03:00] skin being, uh, eaten away as opposed to lichen sclerosis, which actually, um, is actually a thickening, like it means thick and scaly. Mm-hmm. So, um, there is nuance to, to them both, nah. Mm-hmm. Um, if they don't work, uh, if they don't respond to steroids.

So, um, so first of all, I'll say that the majority of people who don't respond to steroids, it's not that the ster is not working, it's that there's, they're not actually taught how to use the steroids. Mm. So, um, uh, often they're just said, okay, here's a tube. Go use it. Mm-hmm. Um, uh, that's, you know, I have the same tennis racket as Roger Federer.

He gets a little better results than I do because he knows how to use that tennis racket just a little bit better than I do. And so I actually think that people aren't taught how to use steroids. So the most important thing with steroids is, number one, you wanna soak and warm water first to soften the skin.

Dr. Linda Bluestein: Mm. 

Dr. Andrew Goldstein: And then you've gotta [01:04:00] rub them, the steroid into the skin really well, because the layer of inflammatory cells is the, is at that bottom layer of the skin at the basement membrane. If you just sort of just do this, it's gonna do absolutely nothing. So that's number one. Now, also, people can be allergic not to the, to the steroid component, but they can be allergic to the, um, uh, the vehicle.

Dr. Linda Bluestein: Mm-hmm. 

Dr. Andrew Goldstein: So there are preservatives in these, um, in these steroids. So sometimes you need to compound the steroids in, um, uh, a base that's non, um, uh, allergenic for that person. Some other subtle nuances. The, um, lichen planus tends to, um, respond better to things called the calcineurin inhibitors, um, than, um, than, uh, because, um, steroids inhibit collagen formation, um, and pardon me, um, they inhibit collagen [01:05:00] formation.

And in the case of lichen sclerosis, you sort of wanna do that. You do wanna, the skin is actually hyper thick, very thick, so you do wanna actually thin the skin a little bit. But in the case of lichen planets where it's eroded, you actually need new skin to grow. So the calcineurin inhibitors, which is tacrolimus and p limus, don't inhibit collagen formation, so they tend to work a little better.

Um, and then lastly, we are doing some very big. Uh, starting some very good clinical trials on a completely different type of medication for, um, lichen sclerosis. And that does probably work also for lichen planus, which are called JAK inhibitors or genes, kinase inhibitors. Mm-hmm. Um, we did a study three years or four years ago now where we biopsied, um, the affected skin or the sclerotic skin, and then we biopsied adjacent normal skin.

And we looked at [01:06:00] the different in, uh, RNAs between the two. So basically we could tell which genes were turned on and off between the normal, uh, skin and the skin that was affected. And in doing so, we were able to find the very specific inflammatory pathway that's affected in lichen sclerosis. And, um, that inflammatory pathway is called the jak.

Regardless of that, you don't have to know that. But what's important is that the JAK inhibitors will, or, uh, it makes very plausible sense that JAK inhibitors will work for this disease. Um, it's much more, steroids are much more like a carpet bal approach to, for the treatment of inflammatory disease or a JAK inhibitors, a much more laser focused, uh, uh, uh, approach to the treatment.

So there are things that, so to your viewer, please don't go out and start asking for JAK inhibitors or things like this. We don't have the data. We don't have the, [01:07:00] um, uh, uh, to, to recommend these things. But I just mention these things is because we're constantly getting better at treating these things.

Mm-hmm. We're wor, you know, the center where I, you know, the center, I run the center for VUL vaginal disorders. Again, we constantly are doing research on all of these things. Um, we, uh, every few years there's some profoundly new impro important, uh, improvement in discovery that we are making that really leads to new and better treatments for women with vulvar pain, pelvic pain.

So even if you saw someone 10 years ago or 15 years ago and didn't get help, please don't say that I tried that and I'm done. Mm-hmm. Um, we constantly have new tools added to our, uh, our tool belt to help women. That's not to say that we can use tons more, but I, I guess I could. And by saying, you know, when I started this 25 [01:08:00] years ago, we probably got 50% of our patients, 50% better, but I'm sort of proud to say now, um, 25 plus years later, we're probably getting 85% of our patients, at least 85% better.

Wow. So I think we've made a profound, uh, impact. Um, but there's still room to go. 

Dr. Linda Bluestein: And I would actually say that even if they have seen somebody much more recently than that, you know, if you go to. Gynecologist, OB gy, OB gyn, who is doing, you know, deliveries of babies and managing, you know, all the different conditions that can happen and doing tubal ligations and all these different things that they're not specializing like you are.

They might not be aware of the different treatments that are available. So one of the reasons why I feel like the podcast is so important is it brings this information to people, makes it accessible so that they can, you know, even if they can't come out and see you, at least they can maybe try to ask for some of these things and or share this episode with their GYN [01:09:00] and say, Hey, would you be willing to listen to this or read the transcript or, or whatever, because yeah, the JAK inhibitors, that's interesting 'cause those are used also in mast cell activation syndrome course.

Yeah. So, yeah, so, so, so many con, so many connections. Of course. So, so this is just fan fantastic information and um, I'm so grateful to you. Before we wrap up, the last question that I always ask is for a hypermobility hack. So do you have a hack that you can share with us? 

Dr. Andrew Goldstein: Uh, I think you probably asked me to come up with one.

Um, I, I, and I, and I forgot if I came up with one or not. I guess it's just important. So I guess the, the one hack is that don't ignore the hips. Um, mm-hmm. I think, I think that this is, I think that this is, um, uh, the, the overlooked so much, um, even by, um, healthcare physical therapists. The, the role of the hips and labrum play, uh, in involve in pelvic pain is, is, [01:10:00] is, um, uh, uh.

It is a key. And so that's really, I guess, important because that, you know, I think that this is, uh, it's not addressed or they, or my, I, I know I have a labral tear, but my orthopedic surgeon said it's fine. Whatever. It, it, it, you know, or certainly doesn't know the connection between this and why I have chronic rectal pain and I can't sit for, for 10 minutes.

Mm-hmm. Um, and, um, and so don't overlook the hips. That's my, that's my hack. Okay. 

Dr. Linda Bluestein: And you gave us lots of hacks, but I, I always like to end, end with one special hack. So. Wonderful. Um, can you let us know where people can find more about your incredible work and if you have any special projects or research that you wanna share with us?

Dr. Andrew Goldstein: Um, so, uh, again, uh, where, uh, you can find a lot of information. Plus, uh, our practice is vul dia.com. Mm-hmm. Um, and, uh, again, I do recommend if you can't come see us, and I certainly [01:11:00] understand people can't all come to New York City or Washington DC that, uh, the books went, sex hurts. And, uh, female sexual pain disorders are, are, uh, are quite beneficial.

Um, so those are one things. Um, and, um, I guess lastly, if you, uh, uh, what I do on my free times, I do a lot of cervical cancer screening, um, in resource poor countries. And so if you care about, uh, women's health and resource poor countries, um, and, um, have recognized that a lot of the, um, uh. Uh, aid to these countries has been dramatically cut, um, in the very recent months.

If you care about that, uh, if you went to our website, gyn cancers.org gyn, uh, cancers, uh, dot org, um, I'm sorry, uh, uh, GY Cancer, I'm sorry, org not what they asked, um, that, that, um, [01:12:00] that, um, uh, you could certainly help, uh, uh, our, our treatment of women and resource. For countries who are dying of cervical cancer with, um, if they just, if a woman is freed one time in her life, we would reduce her chances of dying of cervical cancer by 70%.

So, wow. That's my, that's my, uh, that's my, uh, uh, for pitch on that as far as that goes. 

Dr. Linda Bluestein: Okay. Well, we'll definitely share that as, as well. Uh, thank you so much for taking so much time to chat with me today and share this wonderful information. And I just think it's so important for people to know that there are things that you can do.

You know, so many of us are told, you know, we don't, we don't have anything for you. And it's so frustrating and I feel like this is just a conversation that's gonna really help a lot of people. So I'm just so appreciative of, of your time today. 

Dr. Andrew Goldstein: Well, thanks for having me again. I'm glad we could, uh, get this information out there.

Dr. Linda Bluestein: I've really enjoyed this [01:13:00] conversation today with Dr. Andrew Goldstein. I feel like it's so important for women to know what they can do in order to improve their pelvic pain and their perineal pain, and this is such a common problem. So many women are suffering needlessly. So I hope you found this episode helpful.

I know I did. I really wanna thank you for listening to this week's episode of the Bendy Bodies. With the Hypermobility MD Podcast, you can help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast. This really helps raise awareness about these complex conditions.

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