Hidden Causes of Pain ‘Down There’ with Dr. Andrew Goldstein

[00:49] 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 Vulvovaginal 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 perineal pain. This is going to 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 going to listen in and get lots of tips from today's episode.
[01:24] 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 ISSWSH. Dr. Goldstein has been a grant recipient of the National Vulvodynia Association and other private foundations. He is the founder and president of a 501(c)(3) 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 8 books: Reclaiming Desire, Female Sexual Pain Disorders Evaluation and Management, When Sex Hurts, Management of Sexual Dysfunction in Men and Women: An Interdisciplinary Approach, and The Textbook of Female Sexual Function and Dysfunction.
[02:22] Dr. Goldstein is actively involved in research and has published more than 170 peer-reviewed articles, abstracts, and book chapters on female sexual dysfunction, sexual pain disorders, lichen sclerosus, vulvodynia, vulvar vestibulitis syndrome, or vestibulodynia, and cervical cancer screening. I am so excited to have this conversation with Dr. Goldstein 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.
[02:57] I am so excited to chat with Dr. Andrew Goldstein. Dr. Goldstein, I noticed that you have been interested, it looks like, in Ehlers-Danlos for quite some time, because you actually published a paper back in 2013 about two case presentations of profound labial edema as a presenting symptom of hypermobile type EDS. That was quite some time ago. So is this a subject that you've been interested in for a while?

[03:26] Dr. Andrew Goldstein: Yeah, I've been taking care of women with pelvic pain and vulvar pain for more than 25 years now. And when I started doing this, this thing called vulvodynia was this black box where no one knew what it is and no one knew how to treat it. So for the last 25-plus years, I've been trying to figure out the causes of vulvodynia. And one of the things that I've found over the years is both the myofascial component and other components to the vulvar pain and pelvic pain. And I recognized, again, even more than a dozen years ago, that hypermobility does play a role, though I'm amazed even more every day how profoundly it affects people with pelvic pain.

[04:24] Dr. Linda Bluestein: And just so the listeners are all on the same page, can you define vulvodynia for us?

[04:30] Dr. Andrew Goldstein: So the old term of vulvodynia is vulvar pain of a 3-month duration with no known cause. But I don't really use that definition very much, because if there's no known cause, that just means that I'm not smart enough to figure it out yet. And so really, as I 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 for someone to come into my office and I just say, you have vulvodynia.
[05:04] Usually they'll come in saying, "I've been told I have vulvodynia," and I'll say, "Okay, but now let's figure out what's causing your vulvar pain." Just like if someone went to an orthopedic surgeon and said, "I have knee pain." The orthopedic surgeon is going to try to figure out if they have arthritis or bursitis or a torn ACL or torn MCL or patellar tendon issue or something like that. We figure out what the differential diagnosis is — what are the potential causes of pain? And that's sort of been my life's work: to try to figure out the different causes of pain.

[05:45] Dr. Linda Bluestein: So many people have benefited from this work that you're doing, because I feel like 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 can relate to this." They may have already seen a gynecologist who says, "Well, you have vulvodynia," but there's really not much offered in the way of resources. So I think this is such an important conversation to have, and the work that you're doing is really, really important. We thank you for that because there are a lot of people who need this help.
[06:22] So maybe we can talk first about the myriad of ways that EDS — the Ehlers-Danlos syndromes and/or hypermobility spectrum disorders — can contribute to pelvic pain. For the purposes of this conversation, I don't think we're going to separate those necessarily, so we'll talk about the impacts of those conditions in general, and also mast cell activation syndrome. I know there's quite a few, so if you could give us some examples of ways those conditions can contribute to pelvic pain.

[06:57] Dr. Andrew Goldstein: Sure. I sort of break them up into 3 categories: the hypermobility itself, the mast cell component, and the dysautonomia, which also plays a big role in pelvic pain. And just before I start, I actually think that the biggest predictor of pelvic and vulvar pain — the biggest predictor — is this triad of EDS, mast cell activation, and dysautonomia. And it really hasn't been talked about because people don't know how to look for it. It's very underdiagnosed.
[07:38] Until I started looking for it, I didn't know. People would mention their other medical problems — migraines, asthma, eczema, GERD, IBS, even endometriosis or interstitial cystitis — and I sort of just put those aside and said, "We're going to focus on why you're here today," instead of realizing that this is a big, big clue as to why they're here today. So really for the last 3 or 4 years I've been digging more and more into this and realizing that there are many ways.
[08:21] So if we look at just the hypermobility part, one of the things — as I'm sure you and your listeners are aware — is that core stabilization is a big issue. If you don't have stable joints, one way the body compensates is by tightening up the muscles. And so one way people do this is they tighten up their pelvic floor muscles. The problem is that if you have hypertonic or overactive pelvic floor muscles, that cuts down blood flow to the area. That decrease in blood flow causes a decrease in oxygen to both the muscles as well as the overlying mucosa or skin. That decrease in oxygen leads to the tissue living anaerobically, which then causes a buildup of lactic acid into the tissues, which causes a burning, throbbing rawness — just like someone who's been running a marathon for 5 years. So that's sort of the most basic way. That was my window into this world of 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 tip of the iceberg — a very important tip, but just the tip.
[09:36] The second most common way is that people who have EDS and hypermobility frequently have injuries. One of the most common injuries is labral tears of the hip. Labral tears of the hip then cause instability in the hips. The only way to stabilize the hips is to have the muscles of the hips go into spasm. One of the muscles that goes into spasm is the obturator internus muscle, and the obturator internus muscle attaches to the pelvic floor. So you'll get hyperactivity or overactivity of the pelvic floor because of hip instability because of EDS.
[10:29] Additionally, when the obturator internus muscle goes into spasm, it can compress a nerve that goes to the pelvic floor called the pudendal nerve. The pudendal nerve has branches that go to the clitoris, to the rectum, and the vulva and vagina. So you can actually get severe vulvar pain — or what people used to call pudendal neuralgia — only because of a hip injury. And you may not even have profound hip pain, but the hip is not stable enough such that the obturator internus muscle is in spasm and it's compressing the pudendal nerve.
[11:12] Not only do you get pudendal neuralgia from compression of the pudendal nerve — and the symptoms are clitoral pain, vulvar pain, vaginal pain, rectal pain — but you can also get something called persistent genital arousal disorder, or PGAD. PGAD is symptoms of unwanted arousal, and it's very distressing. It can again be caused by a labral tear in the hip leading to compression of the pudendal nerve.

[11:45] Dr. Linda Bluestein: I'm sorry, I just want to ask for a point of clarification before you go on. Are you saying that with the obturator internus being hypertonic or hyperactive, you might not 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 genital area, in the rectum, in the vagina?

[12:17] Dr. Andrew Goldstein: Exactly. And it's difficult to convince an orthopedic surgeon to operate on someone's hip to fix a labral tear if the patient is not actually complaining of significant hip pain but instead has vulvar pain. There are a couple of ways you can prove it to them. One way is to do a pudendal nerve block and see if the pain goes away. You can even do botulinum toxin injections into the obturator internus muscle — Botox. And if the pain goes away after that, it often can convince an orthopedic surgeon that the hip is the cause of the vulvar pain. But they're not trained for this, so it's hard for them. We do have colleagues who will actually listen and make that connection.
[13:12] The third way that EDS contributes — besides injuries in the hips — is that you frequently have injuries to the lumbar spine. Herniated discs and annular tears are all much more common in people who are hypermobile. What can happen is a herniated disc in the lumbar spine will cause irritation of the nerve roots that make up the pudendal nerve — the sacral nerve roots S2, S3, and S4. So you can get vulvar pain, vaginal pain, and pelvic pain because of a herniated disc. That is much more common in people with EDS and hypermobility.
[14:07] Additionally, still at the level of the spine, people who have EDS and hypermobility are more likely to have something called Tarlov cysts or perineural cysts. These cysts, which lie along the back of the spine, can also impinge or irritate those sacral nerve roots — S2, S3, and S4. So that's another reason and way that hypermobility can lead to pelvic pain.
[14:34] And that's just the hypermobility component. Continuing along that component, people can also have venous insufficiency. You can get something called pelvic congestion syndrome because the veins of the pelvis — and there can be quite a rich supply — can get dilated. You'll get just a fullness or a discomfort, a constant pressure in the pelvis because of this venous insufficiency. That can very likely be driven by EDS. And as I mentioned, going back to what you referenced from 2013, we recognized that you can even get very profound vulvar swelling with arousal because of this venous insufficiency.
[15:41] I have one more component in the EDS category. You can also get organ prolapse — 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 in people who have EDS and hypermobility.

[16:06] Dr. Linda Bluestein: Before we move on to MCAS, I made a note about Tarlov cysts because I wanted to make sure we talked about that. That's actually how I found out that I had EDS — I had a sacral Tarlov cyst and had all kinds of problems from it and ultimately had surgery for it. My neurosurgeon, Dr. Frank Feigenbaum, I've interviewed him for this podcast, so we will link that episode in the show notes so people can learn more about Tarlov cysts.
[16:35] I find it so frustrating that people will get imaging done and the radiologist might not even comment on the Tarlov cysts at all, because as far as they're concerned, they're an incidental finding. And if they do mention them, they often put it in the findings but not in the impression. So oftentimes the patient is only told what the impression was, and if they don't actually go and look at the full report, they may not even know about it.

[17:02] Dr. Andrew Goldstein: I always specify to the radiologist when I'm ordering imaging — I don't just write "lumbar MRI." I say "lumbar MRI, rule out herniated discs, annular tears, and Tarlov cysts." Now, they often will also ignore annular tears. So an annular tear, for your listeners, is this: if you look at the discs between the vertebrae in 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 acts as a shock absorber. What can happen is that outer core can tear and that liquid can seep out, just like jelly coming out of a jelly donut. That liquid can be very irritating to the nerve roots. So a very small annular tear can cause profound neurologic symptoms, and radiologists often won't even mention them.
[17:51] So it's very important that when you ask for these specific imaging studies, you tell the radiologist exactly what to look for.

[18:14] Dr. Linda Bluestein: That's a really good point. We have a fair number of medical professionals who listen to this podcast, so every little pointer like that is much appreciated. Thank you.

[18:24] Dr. Andrew Goldstein: And also, make sure you get as good an MRI machine as possible. You'd almost always want a 3-Tesla machine as opposed to a 1.5-Tesla machine. You really need good visualization and good resolution to see some of these small annular tears.

[18:44] Dr. Linda Bluestein: That's something you probably know about locally for your patients. But if patients are listening, is that something they can call the imaging center and ask?

[18:57] Dr. Andrew Goldstein: Just ask, "Is your machine a 3T or 3-Tesla machine?" — not the car. That's the strength of the magnet.

[19:06] Dr. Linda Bluestein: Right, right.

[19:07] Dr. Andrew Goldstein: So those are at least the things I can think of for now. Oh, one more — I lied. Hernias. Hernias can be a profound cause of pelvic pain. And people who have EDS can have many, many hernias. I've had patients who have 13 or 14 different abdominal wall and obturator hernias, and these hernias can cause pain. They can very often be very insidious pain — you can't figure out where it is. It's not just the pudendal nerve, but the genitofemoral nerve, the ilioinguinal nerve, the obturator nerve — all of these nerves can be irritated if there's a hernia there as well.
So good imaging is important, but not just good imaging — it's really an awareness that these things may be the issue. Because unfortunately, no one is going to automatically make that connection. The radiologist is not going to say, "Well, this may be the cause of your pain," and the general surgeon may not know that 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.
[20:36] And then it's sort of peeling away layers of an onion. It's often a lot of nerve blocks to figure it out — injecting some anesthetic in these areas and asking, does the pain go away or not, even if it just goes away for an hour or two. We do rely a lot on either physiatrists or interventional radiologists to do nerve blocks with me 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 the labral tears and the Tarlov cysts.
[21:26] The other way we can try to figure this out besides nerve blocks is something called neurogenital testing. We're looking at nerve conduction — not just going down to the vulva and the perineum, but also looking at nerves going down to the legs and feet. If there's abnormal nerve conduction going to both the vulva and 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 in one of those two distributions, it's more likely to be more peripheral. So we're always trying to triangulate as to where the potential problem is.

[22:12] Dr. Linda Bluestein: Is that testing you do in your office, or do you refer them out?

[22:18] Dr. Andrew Goldstein: I have that in my office. Another colleague by the name of Irwin Goldstein — no relation — we've written several books together, but no relation. Irwin Goldstein is on the other coast, in San Diego, and he also does neurogenital testing. To my knowledge, we're really the only two people in the U.S. who are doing it.

[22:40] Dr. Linda Bluestein: I've also interviewed him for the podcast. And I was wondering if you were related, to be honest.

[22:46] Dr. Andrew Goldstein: Nope. It makes it a bit more complicated — he has a son named Andrew too. Oh my gosh.

[22:53] Dr. Linda Bluestein: That's funny. So I will link that episode as well because we covered very different topics, but people listening to this are probably going to be interested in that episode too. You both have done such amazing work. Okay. So should we move on to MCAS?

[23:13] Dr. Andrew Goldstein: Sure. So mast cells are, I guess, the evil white blood cell. And obviously they have a huge role in inflammation. So one of the more common causes of vulvodynia or vulvar pain is something called neuroproliferation. Neuroproliferation is when you get too many nerve endings in the tissue. One reason you get too many nerve endings is because of a severe allergic reaction or a severe chronic infection. These things are mediated by mast cells, and mast cells, if they stay activated, will secrete something called nerve growth factor. Nerve growth factor actually causes the sprouting of new nerve endings. You can get a huge increase in the number of nerve endings.
[24:20] Unfortunately, the type of nerve endings that grow are called C-afferent nociceptors, and those nerve endings are responsible for the sensations of burning, rawness, and cutting. To make matters even worse, these mast cells will secrete something called heparanase. Heparanase allows those nerve endings to actually pierce the bottom layer of the skin. Nerve endings are supposed to stop at what is known as the basement membrane, which is the bottommost layer of the skin — it's what separates the skin from the fat. The nerve endings should stop there, but what happens is now you have all these new nerve endings growing and growing, and they're too numerous and too superficial.
[25:15] So you get this condition called neuroproliferative vestibulodynia. It's a mouthful, but basically they have too many nerve endings in the entrance of the vagina called the vestibule, and so they have profound pain at penetration, at attempted penetration, during tampon insertion or intercourse, or even just when there's pressure applied to the area with underwear or other clothing. So mast cells can cause that.
[25:51] Additionally, a similar condition in the bladder called interstitial cystitis or painful bladder syndrome is also mast cell mediated. You get severe chronic inflammation and irritation of the bladder lining, again mast cell mediated. And that can happen, for example, if someone has a long-term urinary tract infection, or people can get hypersensitized to things such as caffeine, alcohol, citrus, or acid in the urine.
There's also a condition called endometriosis, in which the lining of the uterus — the endometrium — grows outside the uterine cavity out into the pelvic cavity. That can cause profound pain, very painful periods, scarring, and infertility. If you biopsy the lesions that show endometriosis, not only do you find the endometrium growing where it shouldn't, but you also have too many mast cells and too many nerve endings. So it's the same pathology whether it's endometriosis, neuroproliferative vestibulodynia, or interstitial cystitis / painful bladder syndrome.
[27:33] We also recognize that IBS is often mast cell linked, as is SIBO. And when you have chronic abdominal pain because of GI-related issues, that can also lead to chronic pelvic pain. So these mast cells — the bad actors — are really a big, big player when it comes to pelvic pain, aside from the hypermobility components we just talked about.

[28:10] Dr. Linda Bluestein: So you're finding that people who have SIBO — small intestinal bacterial overgrowth — in addition to having abdominal pain from that, pelvic pain is also a common finding?

[28:20] Dr. Andrew Goldstein: Yes. And again, it may not just be the SIBO itself, but because they have mast cell activation, they can have these other problems as well.

[28:34] Dr. Linda Bluestein: Yeah. And we know that people with these problems — and we didn't even talk about POTS yet, which is of course one of the forms of dysautonomia — so many of these things have such overlap and can contribute to all three of those things. It really becomes a complex situation very quickly. Are there some things we need to be aware of then with dysautonomia? POTS — postural orthostatic tachycardia syndrome — is one of the diagnoses that fall under the category of dysautonomia, or dysfunction of the autonomic nervous system.

[29:20] Dr. Andrew Goldstein: Yes. And again, the terrible triad of dysautonomia does also cause pelvic pain. Not only is the pudendal nerve going to the vulva and vagina, but there's also the pelvic nerve. The pelvic nerve consists of the autonomic nerves that go to the uterus, the cervix, and all of the glands of the vulva and vagina. So if you have dysautonomia, you can have pain associated with the dysautonomia as well. You can have glandular dysfunction as well as deeper pelvic pain.
[30:07] It's less of what we call somatic pain — you can't exactly put your finger and say, "It hurts right here." It's just a diffuse unpleasantness, and it can be a profound unpleasantness. And often that's attributed purely to endometriosis. People say, "Okay, if you don't have endometriosis, we don't know what's causing your pelvic pain," but often it could be related to the pelvic nerve. So the dysautonomia is another component of this triad that plays a role in pelvic pain.

[30:46] Dr. Linda Bluestein: Okay. Well, we are going to take a quick break, and when we come back, we are going to talk about treatment options, prognosis, and some of the different things that Dr. Goldstein has found most effective. We'll be right back.

[31:57] Dr. Linda Bluestein: Okay, we're back with Dr. Goldstein. Can you start out now by telling us, in terms of resources — obviously you have your practice, and not everyone can get to you or to Dr. Irwin Goldstein in San Diego. What resources are there for women to figure out the cause of their pelvic pain or their pain with sex?

[32:21] Dr. Andrew Goldstein: Well, Irwin and I did write a book together called When Sex Hurts, and the second edition was released just about a year ago. 100% of the proceeds of that book go to the National Vulvodynia Association — we've never made a nickel on it. It's available on Amazon. I really do think it's a really good resource.
[32:56] I guess if there's any deficiency in the book, it doesn't talk enough about EDS. It certainly mentions it and hypermobility, but even when we wrote this 18 months ago, I just didn't fully understand the richness of how this triad affects pelvic pain. I realize more and more every day. So that's one resource.
[33:33] We do have a textbook for professionals called Female Sexual Pain Disorders, and the second edition of that came out a few years ago as well. 100% of those proceeds are donated to the International Society for the Study of Women's Sexual Health, or ISSWSH.
[33:53] So those are some resources. For online resources, I have a website called vulvodynia.com where we post a lot of information, including all our published work. And the ISSWSH — isswsh.org — has a lot of information for patients as well as a "find a provider" feature. If you look for someone who's an ISSWSH 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. Those are probably the biggest resources. I'll probably think of a couple others in a few minutes, but those are some good places to start.

[34:55] Dr. Linda Bluestein: Great. And I actually just spoke at the ISSWSH conference — it was my first one, in Atlanta a couple months ago — what a great organization. And it's wonderful that you're a part of it and that you've published these books and are donating 100% of the proceeds, because writing a book is just an incredible amount of work. So that's amazing.
[35:21] We'll be sure to link all of those things in the show notes so people can find them easily. One thing that a lot of people have been referred to — including myself, as someone who has at least some component of each thing in the triad to some degree — is pelvic floor physical therapy. 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?

[35:49] Dr. Andrew Goldstein: Absolutely. So a couple of things. First of all, when muscles are hypertonic, they're not just tight — they're tight and short. And that leads to a profound decrease in blood flow. Just a 10% increase in muscle tone will cause a 50% decrease in blood flow. That profound decrease in blood flow causes a decrease in oxygen — hypoxia, lack of oxygen. And it's not just actually the buildup of lactic acid. There's something called hypoxic inflammatory response — decreased oxygen leads to inflammation as well, which also activates your mast cells, of course, to make things worse.
[36:29] So the muscles are not just tight, they're tight and short. The only way to get blood flow back — and therefore oxygen back — to the muscles is that two things have to happen: the muscles have to both relax and get back to their normal length. The problem is that if you just go to physical therapy, they're stretching a tight muscle — stretching a rubber band. People may get loose during physical therapy, but by the time they're back next week, they're tight again. We really need to help the physical therapist by relaxing the muscles first.
[37:04] The way I do that — there are two main types of muscle relaxants I use. One is suppositories of diazepam, which is Valium. Sometimes if people can't tolerate it, we use a muscle relaxant called baclofen, although I feel that diazepam works better. But the big gun, the thing that works really the best, is botulinum toxin injections — Botox, or Dysport, or other name brands. It doesn't matter which brand, but botulinum toxin injections, if done correctly at the right dose, can really profoundly help a pelvic floor physical therapist. That's one reason why pelvic floor physical therapy fails: we're not helping the physical therapist with muscle relaxation first.
The second reason it often fails is because structural problems aren't being addressed. You may have a leg length discrepancy, or they'll miss the labral tear. Physical therapists don't always have a strong ortho background, and again, if someone's not complaining of bad hip pain, people may not be looking for it. SI joint instability is also so common with EDS. If these aren't addressed, it's two steps forward, one step back.
[39:02] There is obviously a wide range of experience levels among pelvic floor physical therapists. I work in New York City and there are probably 150 to 200 pelvic floor physical therapists there — but there's a wide range. People will often say, "I went to pelvic floor PT," and I'll ask, "How much internal work did they do?" And they go, "Oh, they never did internal work." So there's a range of experience levels, and I think that's also part of why physical therapy doesn't always work, even though it's the right thing to do.

[40:07] Dr. Linda Bluestein: And when it comes to doing Botox or some other neurotoxin and relaxing the muscles, what about if the person has hip instability or SI joint instability? Are you potentially putting them at risk of more instability if the pelvic floor is sort of trying to hold things stable?

[40:27] Dr. Andrew Goldstein: So you have to be very localized as to which muscles you're treating — you're not doing a global relaxation. With hip instability, I'll actually stay far away from the obturator internus unless they have pudendal nerve pain, because then you do want to relax the obturator internus so that their pain can go away — but with the understanding that they're really going to have to stabilize their hips somehow, whether through physical therapy or even surgery if necessary.
[41:10] The benefit of these toxins is that they stay where you inject them. So if I'm worried about pain with intercourse or pain upon penetration, I can really localize the treatment to the muscles right at the entrance that are causing pain and not cause instability of the whole pelvic floor.

[41:35] Dr. Linda Bluestein: Okay. And if somebody is going to a pelvic floor physical therapist who says they can do dry needling in that area — because of course they can't inject Botox — what is your opinion about dry needling of the pelvic floor?

[41:47] Dr. Andrew Goldstein: Dry needling and even trigger point injections are okay. The muscles will relax for a day or two. But the nice thing about botulinum toxin is it'll last 3 or 4 months. If you're getting a needle into something, I would rather it last 3 or 4 months than 3 or 4 days. There is a cost factor and some insurances will not cover it. But I've actually been doing botulinum toxin injections of the pelvic floor since 2004. I've injected more than 1,500 women, and it is really — if I had to give that up, I don't know if I could practice medicine.

[41:50] Dr. Linda Bluestein: Wow.

[42:50] Dr. Andrew Goldstein: Because it's such a key tool in my tool belt for pelvic pain.

[43:00] Dr. Linda Bluestein: Okay. So that treatment versus dry needling — and then you can probably even go down one other level to myofascial release, but that's going to be probably even more short-lived, right? So that's maybe why some people have had that done on the pelvic floor and it might give some relief for a period of a few hours if you're lucky.

[43:21] Dr. Andrew Goldstein: Right. But the thing about myofascial release is that it is lengthening the muscle, so that is essential. But again, are you stretching a rubber band, or are you stretching a rubber band that you've cut so that it can actually get back to its normal functional length?
[43:39] I also think it's important to understand that strengthening has its place, but depending on the situation, you first have to work on relaxation. I think sometimes physical therapists jump into strengthening too quickly, and we've got to relieve the pain first before we can regain function. Sometimes physical therapists or patients are limited to 8 or 6 sessions, and the desire to do so much in a short amount of time gets people jumping from steps A to D to F without getting through B and C, which is getting rid of the pain.

[44:38] Dr. Linda Bluestein: So you've mentioned Botox as a treatment option, and then in some cases people may need surgical repair of 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 the cause, but what are some of the other things you've found helpful in your practice?

[45:00] Dr. Andrew Goldstein: Nerve blocks can also be incredibly beneficial depending on what — if it's a true neurologic injury. Nerve blocks can be profoundly impactful in a very good way.
[45:16] We are doing a study right now on shockwave therapy and how shockwave can augment pelvic floor physical therapy. It's a new modality. We know it's very safe. Anecdotally, many pelvic floor physical therapists feel that it is quite beneficial. We do know that shockwave increases blood flow, cuts down inflammation, and it also brings stem cells to the area. So there really could be some good regenerative properties to shockwave. We're doing a clinical trial on that right now — not to supplant pelvic floor physical therapy, but to augment it.
[46:10] Other treatments: I'm not a mast cell specialist, but I certainly understand that using both antihistamines — H1 and H2 blockers — as well as mast cell stabilizers like cromolyn sodium, montelukast (Singulair), and ketotifen are very important to cut down on inflammation throughout the whole body, especially if I do think it's a mast cell-mediated process. So I make liberal use of those as well.

[46:55] Dr. Linda Bluestein: I've found that when I prescribe those to patients, sometimes they're not necessarily looking for this, but they do find an improvement in their bladder pain or their perineal pain or whatever sort of pelvic pain it might be. Have you ever tried or recommended that someone try using either cromolyn sodium or ketotifen topically on the vulva?

[47:17] Dr. Andrew Goldstein: I have not. There was a study of a topical preparation of cromolyn sodium done by Paul Nyirjesy, maybe 20 years ago, and it did not actually show benefit. But this was in the early days of vulvodynia research, when all vulvodynia was still a black box. Would it work if you narrowed down the people to those with more of an inflammatory vestibulodynia, rather than vestibulodynia caused by hormonal factors or too many nerve endings? I don't know. So I don't typically use it topically.
[47:59] I actually tend to try to stay away from topical preparations in general because they can be very irritating. There are other vulvar specialists out there who are compounding combinations of gabapentin, amitriptyline, ketamine, cromolyn, and baclofen and throwing them all at people like the kitchen sink. I've generally found those to be incredibly irritating, and I have not found much success with those preparations. Others have. I don't exactly know why I've failed where they've had success. But in general, especially for people who have topical allergen sensitivities and dermographism, I stay away from them.
[49:12] Basic vulvar care measures are also just really important. People are exposed to so many chemicals on the vulva and they don't realize it. Dove soap — "99.44% pure" — has 12 different things in it. Toilet paper, if it's soft and smells good, that's not because trees are naturally soft and smell good. That's just lots of chemicals. So we really tell people to focus on hypoallergenic toilet paper, hypoallergenic menstrual pads, staying away from soaps, and if you can, hand-washing any clothing that will touch the vulva.
[50:08] I practice in New York City, and in apartment buildings people will share washing machines. Someone will say, "Well, I use my All Free & Clear, so I'm using hypoallergenic soap." But you're also using whatever the last 30 people used in that washing machine. You really have to be careful about allergens and potential irritants.
[50:43] I find that there's a notable increase in vulvar pain when people go off to college. They've had very sensitive skin, but their moms have known about it for a long time and managed laundry carefully at home. Then they go off to a dormitory, share the machines with 50 classmates, use whatever toilet paper or soap is lying around, and that can really cause some problems.

[51:21] Dr. Linda Bluestein: I feel like you just described my whole childhood, because my mother went through this process with me — figuring out what I was sensitive to. And definitely over the years I've discovered, kind of like what you were saying, that chemical exposure and even simple things like tight pants or sitting for long periods of time can also increase the risk of having more problems.

[51:51] Dr. Andrew Goldstein: Yes — putting pressure on the pudendal nerves. So all of these things matter. It's complicated, I guess. We're engineered with a lot of parts all in a very small area in the pelvis — reproductive and defecatory and urinary and core stabilization all happening in a very small area, and it can be profoundly impacted by all the things we've talked about.

[52:24] Dr. Linda Bluestein: Okay. A listener asked a question — I asked for some listener questions, and I have a couple I wanted to try to get to before we wrap up. The first person asked about the interaction between endometriosis and MCAS and EDS, and what are your thoughts on treatment for truly diagnosed vestibulodynia for hypermobile folks if dermatologic conditions, hormone imbalance, yeast, etc., have all been ruled out and the only findings are chronic inflammation and persistent pain. Is surgery such as a vestibulectomy really the best option? Do the high success rates of surgery apply to the hypermobile population? Does vulvar or vaginal tissue that is hypermobile heal well enough to tolerate tissue removal and recovery in this region?

[53:13] Dr. Andrew Goldstein: Luckily, I actually think it does. I've looked at this and have not found any significant difference in success rates for the vestibulectomies I do in people who have hypermobility. I was doing vestibulectomies for 15-plus years without even recognizing that people were hypermobile, and we had very good success rates back then. So that's reassuring.
[53:42] But — and this is very important — I am very, very, very selective as to who I do a vestibulectomy on. It really has to be pain localized just to the vestibule, and it has to be pain throughout the entire vestibule, not just in the back part. And I am incredibly careful to make sure that people do not have components of pudendal neuralgia, because all of those things will severely impact the success rate of the vestibulectomy.
[54:23] Now, pelvic floor dysfunction itself does not impact the success of a vestibulectomy — it just needs to be addressed after the surgery has healed. The vestibulectomy is not necessarily the end of the journey. It's the biggest mountain to overcome, but fixing that doesn't mean you're suddenly perfect and everything is fine. I always talk about my surgical successes at the one-year mark because often there are things we need to do after the surgery is completely healed. But people with EDS do heal well from a vestibulectomy if it's done well by someone who has a lot of experience.

[55:17] Dr. Linda Bluestein: And we discussed vestibulectomy also with Dr. Irwin Goldstein. I probably should have prefaced this — you described earlier what the vestibule is, but without any slides or diagrams, maybe we can find an image to insert right here. Can you explain again what the vestibule is, and also what a vestibulectomy is?

[55:41] Dr. Andrew Goldstein: Sure. The vestibule is the rim of tissue that's right at the entrance of the vagina. It's inside the labia minora — the small lips — and outside the hymenal ring. So it's just about an inch in, right at the entrance. The urethra opens right into the center of this tissue. It's a horseshoe-shaped area of tissue about the size of the back of your thumb — about 2 square centimeters, or think of a postage stamp. And it's very unique tissue — it's different embryologically and structurally than the rest of the vulva or vagina. It acts differently hormonally and it reacts differently to any allergic or infectious insult. That's why the majority of people who have vulvodynia or vulvar pain actually have vestibulodynia — pain confined to the vestibule.
[56:58] A vestibulectomy is to remove the top layer of the skin of the vestibule, about 3 millimeters deep. Think of about 10 sheets of paper stacked together — that's roughly 3 millimeters. So you're taking off this very thin top layer. And in that top 3 millimeters is where all those extra nerve endings are. You remove that top layer and then replace it with tissue that comes from the vagina. We actually pull the vagina down — much like stretching a turtleneck — about a centimeter and a half, to replace the area that was removed.
[57:48] I was taught how to do a vestibulectomy by my mentor, Stan Marinoff, who had done about 300 of them. I have done close to 1,300 of these procedures over the last 27 years. But I used to do a lot more. Way back when, it was a black box and the only thing we knew was to cut out some tissue. But now that we've been able to figure out who has inflammation, who has a hormonal component, who has all these other things, we're doing many, many fewer vestibulectomies.

[58:30] Dr. Linda Bluestein: And what are outcomes like at that one-year mark, would you say?

[58:39] Dr. Andrew Goldstein: So I'll give you my numbers, and I have to say I can't necessarily speak for anyone else out there. We've contacted over 200 women at least a year after surgery, and there is a 97% patient satisfaction rate.

[58:44] Dr. Linda Bluestein: Wow.

[59:07] Dr. Andrew Goldstein: These are independent researchers — it's not me asking my patients if they got better. 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% say yes to both. That's incredibly high. But again, I'm very, very cautious as to who I do surgery on.
At one year after surgery, 58% of women have zero pain with intercourse — provided they use a lubricant if necessary. An additional 30% have minimal discomfort but can't say zero. So that's 88% of people with minimal or zero pain with intercourse. And even of the 12% remaining, three-quarters of those women — 9 out of that 12% — are still very happy they had surgery because their pain is only mild to moderate and nowhere near as bad as before. So the vast, vast majority of people we do a vestibulectomy on are very happy they had it.
Now, only about 7% of my patients who walk into my office in a given year are vestibulectomy candidates. I evaluate over 500 new pelvic pain and vulvar pain patients a year, and I'm doing far fewer than 40 vestibulectomies a year. So I'm very, very selective. The success rates are based on technique, but the success of surgery is also determined before you walk into the operating room — by knowing who you should operate on.

[1:01:07] Dr. Linda Bluestein: Yeah, absolutely. I'm married to a urologist, by the way, and patient selection is everything.

[1:01:13] Dr. Andrew Goldstein: Yes. The failure can be made before you walk into the operating room if you're operating on the wrong person. First, do no harm. So I'm very selective.
[1:01:27] And that's not to say that you have to try 20 other things first before considering surgery — I disagree with the idea that vestibulectomy is the last resort. It is not. It can be the first treatment, if it's the correct diagnosis. The correct diagnosis for vestibulectomy is neuroproliferative vestibulodynia — only having too many nerve endings. And if you have pain only in the back part of the vestibule, that's not the cause of your pain. I find that a lot of people have had vestibulectomies for the wrong reason and they still have pain, because the pain in the back part is where the muscles attach. So you can remove the mucosa on top and still have pain because the muscles are still hypertonic underneath.

[1:02:26] Dr. Linda Bluestein: Right. Okay. And I want to ask one other quick listener question before we wrap up. This person asked about lichen sclerosus and lichen planus — and I don't know if I pronounced that right — how you can tell the difference, and what to do if standard steroids don't work.

[1:02:43] Dr. Andrew Goldstein: So lichen sclerosus and lichen planus are both autoimmune inflammatory skin diseases on the vulva. I would say they're closer than cousins — they're half siblings. And to make things even more complicated, they can coexist.
[1:03:09] One of the ways to know the real difference is that lichen sclerosus does not go into the vagina, whereas lichen planus does. Lichen planus usually causes more erosions — the skin being eaten away — as opposed to lichen sclerosus, which involves a thickening. "Lichen" means thick and scaly. So there is nuance to both.
[1:03:37] Now, if they don't respond to steroids — first of all, the majority of people who don't respond to steroids haven't actually been taught how to use them properly. Often they're just handed a tube and told to go use it. I always say: I have the same tennis racket as Roger Federer, but he gets better results because he knows how to use it. The most important thing with steroids is: number one, soak in warm water first to soften the skin, and then you've got to rub the steroid into the skin really well, because the layer of inflammatory cells is at the bottom layer of the skin at the basement membrane. If you just apply it lightly on the surface, it's going to do absolutely nothing.
[1:04:38] Also, people can be allergic to the steroid itself or to the vehicle — the preservatives in these preparations. So sometimes you need to have the steroid compounded in a non-allergenic base for that person.
[1:05:01] Some other nuances: lichen planus tends to respond better to calcineurin inhibitors, because steroids inhibit collagen formation. In the case of lichen sclerosus, you actually want some of that — the skin is hyper-thick, so you do want to thin it a little. But in the case of lichen planus where the skin is eroded, you actually need new skin to grow. The calcineurin inhibitors — tacrolimus and pimecrolimus — don't inhibit collagen formation, so they tend to work a little better for lichen planus.
[1:05:47] And lastly, we are starting some very promising clinical trials on a completely different type of medication for lichen sclerosus — and likely lichen planus as well — called JAK inhibitors, or Janus kinase inhibitors. We did a study 3 or 4 years ago where we biopsied the affected sclerotic skin and adjacent normal skin, and we looked at the difference in RNAs between the two — basically identifying which genes were turned on or off between normal skin and affected skin. In doing so, we were able to find the very specific inflammatory pathway involved in lichen sclerosus, which is called the JAK-STAT pathway. The JAK inhibitors make very plausible sense as a treatment for this disease. Steroids are more like a carpet bomb approach, whereas a JAK inhibitor is a much more laser-focused approach.
[1:07:17] Please don't go out and start asking for JAK inhibitors right now — we don't yet have the data to recommend them. But I mention this because we are constantly getting better at treating these things. Every few years there's some profoundly new and important improvement that we are making that leads to new and better treatments for women with vulvar and pelvic pain. So even if you saw someone 10 or 15 years ago and didn't get help, please don't say, "I tried that and I'm done." We constantly have new tools added to our tool belt.
[1:08:22] When I started this 25 years ago, we probably got 50% of our patients 50% better. I'm proud to say that now, 25-plus years later, we're probably getting 85% of our patients at least 85% better. We've made a profound impact, but there's still room to go.

[1:08:35] Dr. Linda Bluestein: Wow. And I would actually say that even if someone has seen somebody much more recently than 25 years ago — if you go to a general OB-GYN who is doing deliveries, managing all different conditions, doing tubal ligations, and all the different things — they're not specializing the way you are. They might not be aware of the different treatments that are available.
That's one of the reasons I feel like the podcast is so important — it brings this information to people and makes it accessible, so that even if they can't come see you, they can maybe try to ask for some of these things and/or share this episode with their GYN and say, "Would you be willing to listen to this or read the transcript?" Because yeah, the JAK inhibitors — that's interesting because those are used with mast cell activation syndrome too. So many connections. This is just fantastic information, and I'm so grateful to you.
[1:09:42] Before we wrap up, the last question I always ask is for a hypermobility hack. Do you have a hack you can share with us?

[1:09:50] Dr. Andrew Goldstein: I think the one hack is: don't ignore the hips. I think this is overlooked so much, even by healthcare professionals and physical therapists. The role of the hips and the labrum in vulvar and pelvic pain is key. This is something that often isn't addressed — or someone will say, "I know I have a labral tear, but my orthopedic surgeon said it's fine," and the surgeon certainly doesn't know the connection between that and why they have chronic rectal pain and can't sit for 10 minutes. So don't overlook the hips. That's my hack.

[1:10:55] Dr. Linda Bluestein: Okay. And you gave us lots of hacks, but I always like to end with one special one. Wonderful. Can you let us know where people can find more about your incredible work, and if you have any special projects or research you want to share with us?

[1:11:11] Dr. Andrew Goldstein: Again, where you can find a lot of information plus details about our practices is vulvodynia.com. And I do recommend the books When Sex Hurts and Female Sexual Pain Disorders — they're quite beneficial, and I certainly understand that not everyone can come to New York City or Washington, D.C.
[1:11:37] And lastly, what I do in my free time is a lot of cervical cancer screening in resource-poor countries. A lot of the aid to these countries has been dramatically cut in very recent months, and if you care about that, you can visit gyncancers.org. If a woman is screened just one time in her life, we can reduce her chances of dying of cervical cancer by 70%.

[1:12:40] Dr. Linda Bluestein: Wow.

[1:12:41] Dr. Andrew Goldstein: That's my pitch on that.

[1:12:47] Dr. Linda Bluestein: Okay, we'll definitely share that as well. Thank you so much for taking so much time to chat with me today and share this wonderful information. I just think it's so important for people to know that there are things that can be done. So many of us are told, "We don't have anything for you," and it's so frustrating. This is just a conversation that I think is going to really help a lot of people. I'm so appreciative of your time today.

[1:13:15] Dr. Andrew Goldstein: Well, thanks for having me. I'm glad we could get this information out there.

[1:14:23] Dr. Linda Bluestein: I really enjoyed this conversation today with Dr. Andrew Goldstein. I feel like it's so important for women to know what they can do to improve their pelvic pain and their perineal pain. This is such a common problem and so many women are suffering needlessly. So I hope you found this episode helpful — I know I did.
[1:14:40] I really want to 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. If you would like to dig deeper, you can meet with me one-on-one — please check out the available options on the services page of my website at hypermobilitymd.com.
[1:15:08] You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, Twitter, or LinkedIn at HypermobilityMD. You can find the Human Content producing team at humancontentpods on TikTok and Instagram. You can also find full video episodes up every week on YouTube at Bendy Bodies Podcast.
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