Hidden Causes of Painful Sex with Dr. Irwin Goldstein & Sue Goldstein (Ep 130)

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Dr. Linda Bluestein: [00:00:00] Welcome

back every bendy body to the bendy bodies podcast with your host and founder, Dr. Linda Blustein, the hypermobility MD. Today we will be speaking with Dr. Erwin Goldstein and his wife, Sue Goldstein. I am so excited to chat with Dr. Goldstein. He actually was my doctor quite a few years ago. And he is going to be sharing some incredible information with you today about sexual medicine.

And I'm really excited to get to see them next month because I will be speaking at the ish wish, which stands for international society for women's sexual health in February about joint hypermobility, connective tissue disorders, mast cell activation syndrome, pots, et cetera, and how that can impact sexual health.

Dr. Goldstein is the director of sexual [00:01:00] medicine at University of California, San Diego, and sees patients in his private practice, San Diego Sexual Medicine. Dr. Goldstein has authored more than 370 publications and edited seven textbooks. He is a past editor in chief of Sexual Medicine Reviews and past editor of the Journal of Sexual Medicine.

He is a past president of Ishwish. Also of the Sexual Medicine Society of North America. The World Association for Sexual Health awarded the gold medal to Dr. Goldstein in 2009 in recognition of his lifelong contributions to the field. He has received many awards for his work, including the Ishwish Award for Distinguished Service in Women's Sexual Health, the Lifetime Achievement Award from the SMSNA.

And the Lifetime Achievement Award from the International Society for Sexual Medicine. Sue Goldstein co authored When Sex Isn't Good to provide education and empowerment to women with sexual dysfunction. She is an associate editor of the textbook of Female Sexual Function and Dysfunction and [00:02:00] Female Sexual Pain Disorders and the author of multiple peer reviewed papers.

Sue is a past president of ishwish as well as the industry relations chair. The topic of sexual problems in people with joint hypermobility and related conditions is definitely not discussed often enough and probably affects almost every patient with EDS and related conditions. So I'm really excited to dig into this conversation.

As always, this information is for educational purposes only, and it's not a substitute for personalized medical advice. Stick around until the very end. So you don't miss any of our special hypermobility hacks. Here we go.

I am so excited to be here with Dr. Erwin Goldstein and Sue Goldstein. And I'm going to say right off the bat, uh, Dr. Goldstein is my doctor. We are not going to discuss the specifics of my case today, um, except for the fact that when I was recovering from my tarlov cyst surgery, I, I did actually travel to San Diego so I could get his expertise.

So Super [00:03:00] excited to chat with him today. I've been wanting to do this for a really, really long time. And I know a lot of you have questions about sex and of course, all of these conditions that we talk about on the podcast kept definitely can impasse sexual function. So thank you so much for joining us today.

Dr. Irwin Goldstein: We love you, Linda. 

Dr. Linda Bluestein: So I'm excited to be here. Fabulous. Fabulous. Okay. Well, as you may or may not know, this podcast covers a lot about joint hypermobility, connective tissue disorders like the Ehlers Danlos syndromes, comorbidities like POTS and MCAS, and the healthcare professionals who care for these complex patients often listen to the show.

So Dr. Goldstein, can you start out by telling us why this population should be interested in sexual health? 

Dr. Irwin Goldstein: Oh, my gosh, uh, how many hours do we have here? Right. Well, connective tissue, let's argue, is really important towards everything and anything we do and sex, uh, clearly and the mechanisms of sex, [00:04:00] uh, like the neurologic transfer of information from the genitals to the brain has to pass through the spinal cord area.

And in the spinal cord area, there are discs and the discs are full of connective tissue and. People who have connective tissue problems get tarlosis and annular tears. And those, uh, things sort of, uh, sort of change the course of the sacral spinal nerve root that's carrying all this cool information to the brain and it, um, it causes it to be irritated and then people get unwanted.

Uh, unhappy feelings called dysesthesia, including unwanted arousals and stuff like that. So, uh, for at least that reason, but there's another important reason and that's, uh, the vestibule, um, um, is the entrance, uh, to the, to the vagina. And there is a, uh, crossing, crossing, gotta get my hands in here, crossing of the, uh, of the conditions of [00:05:00] people who have aberrant mass cell activity.

So that's, uh, those, uh, LRD analysis is an example of a, of a condition with aberrant mass cell activity. And there are women who have pain during penetration, even as early as their first tampon, uh, that fits into this mass cell aberrant condition sort of syndrome. Uh, that's called neuro proliferative vestibulodynia.

So we'll see them from, uh, Vestibulodynia perspective, we'll see them from a neurologic perspective, and sadly, it's extremely common. 

Dr. Linda Bluestein: Sure, and vestibulodynia is pain in the vestibule, is that correct? Okay, 

Dr. Irwin Goldstein: okay. You can have noseodynia, chinodynia, foreheadodynia, and vestibulodynia. 

Sue Goldstein: No, he's just being silly.

Dr. Linda Bluestein: Okay, okay. So. I feel like there's just so many different ways in which these conditions can impact sexual health, because when I was asking for people for [00:06:00] questions, and we have some great questions that will address in the second half of the of the program, people were asking questions about things even like sexual positions and and things like that.

So there's a lot of different ways right in which these conditions can impact the ability to have sex. 

Dr. Irwin Goldstein: No question about that. So you talk. 

Sue Goldstein: No, I mean, Okay. Really, there's two different things going on with that last comment that you made, Linda. I mean, the ability to have sex, if you physically need to move a certain way, and your EDS keeps you from being able to bend a certain way, or you're going to bend too far and injure yourself.

But then, you know, the other, the mast cell conditions that you might have, if you have um, Irritable Bowel Syndrome, and, and, and, um, You know, I see interstitial cystitis, you may not feel comfortable having sex. You're afraid of what's going to happen, but vestibulodynia, I mean, it just hurts. And it's not just hurting during sex.

It may hurt to wear tight pants and may hurt to sit for a long time so that it really [00:07:00] impacts your quality of life. And I think sexual function becomes a major indicator of quality of life. When you have to stop having sex, that's the that it's a huge deficit in your quality of life 

Dr. Linda Bluestein: and could definitely impact relationships.

And of course, relationships are important, so it can start kind of a downward spiral that can be really, really problematic for people. But the good 

Dr. Irwin Goldstein: news is, sorry, you talk, I 

Sue Goldstein: mean, these people have, I have a patient right now who is in nursing school and she's had to take three semesters off, uh, until she can get, you know, all of this taken care of because she can't sit in a classroom.

So it's not just the, you know, the sexual part, even though it's a sexual organ, if we're going to talk about the vestibule, but it, you know, it can stop you from just plain living. 

Dr. Irwin Goldstein: So, so we didn't talk about endometriosis, which is another associated condition with Ehler Danlos as part of a condition with aberrant mass selectivity.

And endometriosis is just awful [00:08:00] because your periods are ridiculously painful. You bleed a lot. Penetration is okay. It's the thrusting that that knocks you down because typically the endometriosis is involved in the utero sacral ligament. which is the thing that holds the vagina in place. So if you move the vagina, you move that ligament, which causes pain.

So there's countless, uh, countless issues. And again, you're missing 

Sue Goldstein: days of school. You're missing days of work because your, your, uh, menstruation is so painful from the endometriosis, uh, far beyond the people who just have, you know, more common dysmenorrhea. So your life is really impacted with, with. Any and all of these mass elaborate, you know, conditions.

Dr. Linda Bluestein: And that's an interesting distinction between pain with penetration versus pain with thrusting, because I feel like most doctors are not going to ask those really, really specific questions, right? 

Sue Goldstein: Either they're not knowledgeable enough to ask the questions or they're not comfortable enough having the conversation.

Mm-hmm . I mean, there's a lot of research that shows that [00:09:00] patients are fearful of embarrassing their doctors if they bring up a conversation about sexual function and they want their doctors to bring it up. But the doctors are not comfortable having their conversation either because of their own background, their lack of knowledge, their religious upbringing, uh, or just the fact that they have 12 or 15 minutes to have the conversation.

And one of the things that we tee to teach at the International Society for the Study of Women's Sexual Health is. Start the conversation and the patient says, yes, she has an issue. So, you know, it Mary, this is such an important conversation. Let's schedule another appointment just to have that conversation.

In that moment, she was told her, this is a safe space to have this discussion. That you are not alone because clearly he knows what you're talking about. And that either he is going to help you or his nurse practitioner is going to help you or he's going to find somebody else to help you. But the three most important things you have validated this for the patient and made her realize she's not alone, which is one of the huge struggles.

And I think one of the blessings of the internet is that people are able to find out that they aren't alone, that other people have this problem. But one of the problems [00:10:00] with the internet is they get a lot of bogus information. 

Dr. Irwin Goldstein: Um, but I want to say something, you're talking about doctor learning. What's amazing about this current era, uh, is the podcast, the bendy bodies, the, the, all, all of these, uh, support groups on the various Reddits and Facebooks, the information is happening at, at, at fast pace now.

Um, you know, I just had a woman in the office with this neuro proliferative vestibulodynia who had it all her life and she was informed, Oh, go have a glass of wine or Yeah. One doctor actually told her to have more orgasms because that's what will stop her problem. I mean, really ridiculous information.

Uh, and she, she got care while she was in her fifties and basically her whole life she's had this condition. Whereas we're now getting kids who are 18 years old and 20 years old who are saying on support groups, you know, uh, uh, I can't have sex. What, what is, what, what do I need to know? And blah, blah, blah.

[00:11:00] And they're learning about neuroproliferative. At an early age and getting care that my last four surgeries were done in individuals who were born after the year 2000, it's pretty amazing. 

Sue Goldstein: Just shows how old you and I are getting, but it's true. I have a mantra says the educated patient is the empowered patient.

And the more education that we can get out through sources that are available. I mean, uh, last year we published a. A paper on vestibulodynia and we convinced the editor to allow it to be open access. That means that it was available for people to read. And the rationale I gave him was that physicians either have a subscription to that journal or have access to the journal, but patients don't.

And they're the ones that need to know because they're the ones coming up against the gaslighting. They they're seeing clinicians who don't know enough about the disease state to recognize that there's nothing to be seen when they are on exam. And that doesn't mean there's nothing wrong. I mean, My husband taught me 40 years ago.

Listen to a patient long enough and they will tell you what's wrong with you. [00:12:00] And when you have that 15 minute visit, you don't always have a chance to do that, which is why in our office, for instance, they sit down in Irwin's office for an hour before we even examine them because we want to listen to every nuance and we want to give women or all patients, I'm sorry, you know, the respect that they know what's going on.

They may not know why it's going on. They may not know the diagnosis, but they know what's going on in their bodies. And we have to respect Respect that and not gaslight them. And so that's why having educational material available to all people. So thank you for doing your podcast so that more people have access to this information.

Dr. Irwin Goldstein: And, uh, not to keep this going crazy, but the Tarlo sis thing. I mean, I kind of tell you how many people are told all Tarlev cysts are incidental. They don't mean anything, they don't do anything. In my experience, Mrs. Jones, your, your, uh, your Tarlev cyst is, they're going after the wrong thing. If you think it's a Tarlev cyst, I mean, I don't get it.

But a Tarlov cyst really displaces the sacral nerve root. I mean, give me a break. [00:13:00] And there's plenty of evidence that, I mean, the key evidence is getting a lidocaine injection where the Tarlov cyst is to numb it. God bless. If your symptoms significantly reduce, give me a break. What, what other conclusion can you draw?

Dr. Linda Bluestein: And that's exactly what happened to me when I had a selective block. Yes, my, my pain went away a hundred percent for the first time in years. And 

Dr. Irwin Goldstein: it 

Dr. Linda Bluestein: was amazing. And I had surgery with Dr. Frank Feigenbaum, and that's how I found out about you. And I've, I've interviewed him on the podcast. So we have an episode about Tarlov cyst and we can link that in the show notes as well, because people definitely should check that out.

I find such a huge number of my patients have Tarlov cyst. And like you said, they're told they're all 

Dr. Irwin Goldstein: incidental. They're not exactly else. 

Sue Goldstein: Yeah. Well, again, it's lack of education on behalf of the provider who's saying that unless they have an interest and learning more about the sexual health issues that can occur from it, there, that information is not going to come to them.

They have to [00:14:00] seek it to learn it. So I always said to our patients, go back to your doctor who didn't know better and tell him or her about this information. So maybe the next patient won't have to struggle for so long finding help. 

Dr. Linda Bluestein: Yeah, that's an excellent suggestion. And, and Tarlav cyst can cause so many other symptoms, right?

Because like you said, there's a sacral nerve roots, which, which, uh, actually are going to supply more than just the perineum. Okay, 

Dr. Irwin Goldstein: Linda, let's do a pop quiz. Tell me the three nerves. Yes. Yes. Tell me the three nerves. Say the word pudendal. 

Dr. Linda Bluestein: I was just going to say pudendal would, that was the, that was the one that I was going to say.

Say the word sciatic. Sciatic. Okay. Say 

Dr. Irwin Goldstein: the third is pelvic. 

Dr. Linda Bluestein: Okay, 

Dr. Irwin Goldstein: so pelvic is the inside of the clitoris. It's the bladder. It's the rectum. Um, it's the vagina, the cervix, the uterus, the, the pudendal is all the external stuff from the clitoris down to the perianal area. And the sciatic is your butt and your thigh and your calf and your toes and your feet.

[00:15:00] So all of these weird symptoms that confuse people there, if you have in a symptom complex, something related to your lower extremity, like your butt or your toe or your leg, something related to your front, like your vulva or, or the, uh, the, the, the, the perineum, uh, and something related like to the pelvic nerve, like your belly button, it's weirdly sensitive was yours, weirdly sensitive.

Dr. Linda Bluestein: I don't remember that, actually. 

Dr. Irwin Goldstein: It's a pelvic nerve thing. But my whole point is that there's nothing else that can cause these symptoms coming from one pathology other than the tarlof cyst and the annular tear. Now, the weirdest part of having EDS is you can have both an annular tear and tarlof cyst because they're both connective tissue related.

And we have to do a lot of more detective work to figure out which is which, which is the one causing the pathology. We do that, 

Sue Goldstein: but we see patients with itch itchiness and their clutch and everyone assumes they have a yeast infection and then they [00:16:00] give them treatment. It doesn't do anything well because it's coming from the sacral spinal nerve roots or burning when they pee and they assume that they have some kind of a urinary tract infection.

But there's nothing when you culture them. It's because it's coming from sacral spinal nerve roots. So things can happen in one part of your body coming from another part of your body. And for people who have spine issues, you know, it can affect anything in your lower body and One of my friends always calls it a sex detective, because that's what we are, we have to figure out what, you know, listen to what's happening and then figure out where is the problem, where is the pathology actually occurring, is it at the location of the problem or someplace further upstream, so.

Makes it a challenge and it makes more fun. I mean, I'm not a clinician and full disclosure. I am a clinical researcher and I'm a sexuality educator, but I'm very involved in all of this that we have to do. So while I'm not a physician, I have a far greater understanding of this aspect of medicine than most Physicians because they're not involved in it, but don't ask me anything about other parts of medicine.

I don't 

Dr. Irwin Goldstein: know. Hey, Sue, you think [00:17:00] you just do two jobs? You do about 85 jobs. 

Sue Goldstein: Well, my office, I'm a jack of all trades, 

Dr. Irwin Goldstein: going on surgery, scheduler running all our research, give me a break. I say I'm a 

Sue Goldstein: jack of all trades and master of most of necessity. But I want to give a call out to my, in my office to Claudia, who is my, my compadre between Claudia and myself.

We sort of make sure everything has happened, train all of our new staff, except for our nurse practitioners, of course, are trained under Erwin. But I just want to give a shout out to Claudia because my life would not exist without her helping me with everything. She's our, our administrator, our HR officer, my co researcher, um, and she, like me does a little bit of everything.

And I know this is not a promotion for San Diego sexual medicine, but I love Claudia. So I'm just using this platform to say, thank you. 

Dr. Linda Bluestein: Well, I, um, I feel like one of the things that it was explained to me by one of my GYNs fairly early on was that basically like from the waist to maybe the mid thigh is, is a little bit of a black box for most physicians.

Even if you are a [00:18:00] urologist, um, as Dr. Goldstein is, or if you are a gynecologist, yes, you learn how to do surgeries and you learn a lot about that area. But in terms of like the. The functioning of the musculature and a lot of the other problems that can happen in that area. It seems like there's a lot of people that really struggle to get answers.

And of course, the ideal thing is if they can get help by somebody who they can go to the ish wish website or something like that in order to find someone who is a sex detective. a doctor who's a sex detective. Um, however, not everyone can do that. So what I would love to do is give people some pearls and some things that they might be able to try on their own.

Cause the other thing I feel like is there are some low hanging fruit that can be tried for some of these problems that people might have. So could either of you give us some suggestions or some ideas of some things that are pretty easy for people to try on their own that might be helpful. 

Dr. Irwin Goldstein: Oh, so you start, 

Sue Goldstein: well, I mean, I think one of the things is to have the [00:19:00] gynecologist check their hormone values because a lot of what young women, for instance, have been oral contraceptives have very low testosterone, which not, not in everybody, but in many women causes pain and because they're young, everyone says, Oh, it must be in your head, have a glass of wine.

So that shouldn't be too hard to get a primary care or a gynecologist to order some hormone levels and see if they're normal and normal. Normal for pre menopausal women is, is, you know, it's pretty easy to adjust. The problem is with their post menopausal women, the, the norm, normal, um, done by labs was really the average of menopausal women who have sexual problems.

And so Dr. Willstein, Dr. Gay, they did a study years ago in, in, in women that actually were normal and had never taken any hormones to get real normal values. But we look at the, at the upper tertile. Of that range of normal for all labs. So those are things that you should be able to do with your doctor.

And if he or she is trouble interpreting the labs, maybe, you know, you can look at your own labs, look at the reference range from your [00:20:00] lab and see if you're in the upper tertile. So that's, that's something you can do. And the other thing that, that we can, you can do to see if you have nerve, if your pain may be from neuro proliferative stibulidinia is, is your belly button sensitive.

And that's sort of a key. Okay. And the other thing is to the Q-tip test, you take a little, take a Q-tip and just run it very softly on your vestibule. And if you have pain because of your hormones, you're just gonna feel it. But if you have neuro proliferative vestibular denia, you're gonna have intense pain just from that very soft rub.

And so those are sort of keys to, you know, or cues to you, uh, you know what's going on. I know. What are your thoughts? 

Dr. Irwin Goldstein: Well, Sue, brilliant, brilliant Sue, just spoke of a thing called allodynia. Remember we talked about nosodynia and chanodynia. Allodynia means the opposite of pain. So if you take, here's my wrist, and you take, uh, you can do this, Linda, do this, to tickle your back of your head.

It doesn't hurt you, right? 

Dr. Linda Bluestein: It actually does because I have a nerve. I had surgery here and I got[00:21:00] 

Dr. Irwin Goldstein: because if you have the correct density of nerve endings called nociceptors in the skin, when you tickle, you'll get a tickle response. The problem in the women who have this form of vestibulodynia of too many mast cells and too many nerves, which is common in EDS patients. Uh, you see, you have like a million or so nerve endings just in this little piece of skin.

So when you activate them through just a tickle, you get this burning, awful allodynia response, which is not the tickle. And that's, uh, that's not a good sign to have a burning response to a tickle. So it's a positive allodynia too. I think what, what I would say to being, being the biology oriented person, and I don't know about Tips, uh, at home, but certainly with providers a is get us, get a, get, uh, sex therapy involved.

Get a psychologist involved. You need help. [00:22:00] Uh, you need, you know, this is, uh, annoying and disturbing and unrelenting and unremitting. And, you know, it's, it's just frustrating. So get someone that you can speak with who is positive and, you know, going to work with you towards, uh, Uh, relationship help and provider help, et cetera.

The next thing you there for a second, 

Sue Goldstein: we'll stop you a second. He's not saying go to a therapist instead of a physician. He's saying go to a therapist and a physician that you need to have the medical problems treated, but the medical problems cause cause so many other issues, relationship issues, psychological issues that you need the therapist at the same time or after the treatment's been finished.

So I'm sorry, I just wanted to make sure people understood you weren't saying, you know, get a glass of wine and go to therapy saying, you know, Treat, get treatment and go to therapy. Okay. So 

Dr. Irwin Goldstein: pop quiz. What does Sue say? What type of therapy do we do in sexual medicine? Bio social, social. 

Dr. Linda Bluestein: Yep. Good job. Yeah, no, that's so, that's so important [00:23:00] because I feel like, you know, yes.

And I know in your office, uh, that is, yeah, that is how you do the evaluation. You see a physical, a pelvic floor, physical therapist, you see a psychologist, and then you see you, at least this is what I did. And then you sent me off. To eat lunch and then you said, come back and we're going to talk about you and then when you come back, we're going to tell you what to do.

So, um, so, so I think that's a fantastic approach and just a little, um, heads up because some of the people listening to this are going to say, wow, that's a great idea, but either I don't have insurance or I'm in a different part of the world where I don't have access. To a psychologist, but there are even like some apps that, you know, of course, one on one is always better, right?

But if they, if they can't access one on one counseling, there are some other types of either group counseling or apps and things like that, that I think might be at least a little bit helpful. 

Dr. Irwin Goldstein: But therapists no longer do one on one it's all zoom. So you can tell a medicine from wherever the hell you are.

Sue Goldstein: Yeah, that's still one on one. [00:24:00] They just have to have a license, but no, no, no, she met a physically person, but asex, so asex, 

Dr. Irwin Goldstein: what does that mean? 

Sue Goldstein: Asex certified sex therapists exist around the world. Obviously not in other country, every country, but even though it's an American organization and I'm a member of that as a certified sexuality counselor, they have lists of providers around the world and there are many asex certified therapists in other parts of the world.

So that is a wonderful resource for everybody out there to go on the asex, um, Site and they have they have a find a provider section. I can't tell you off the top of my head where you know where it is on that site, but you'll see it and you can look for a provider that could help you for that. And the same thing with physical therapy.

If you're going to physical therapy, you want to go go to a pelvic floor physical therapist. Everybody gets trained in orthopedics, but you have to go on to additional training to be a pelvic floor physical therapist. Uh, you can go if you go to I'm trying to think of what it is. It's, um, it's the [00:25:00] women's physical therapy association after American physical therapy association, they should have a section it's under women's physical therapy, I believe, even though there are men who need pelvic floor physical therapy, but that's where you would find the pelvic floor physical therapy.

Listing as well. Um, so take advantage of the internet and find people. And we recognize that not everybody who is certified means that they know what they're doing. It's like anybody else, you know, you have to do your research, do your homework. You don't want to be the first person going to somebody straight out of school necessarily.

Um, but there are resources that people can use that will show beyond just in your local community. So take advantage and find somebody that you, that would be helpful. 

Dr. Irwin Goldstein: So, so let me continue. So you need the biopsychosocial. So you need the therapist, uh, but you need the biology too. So, uh, uh, in the history of us in sexual medicine, being involved in EDS, in, uh, tarlof [00:26:00] cyst work and, and annular terror, we had no idea that any of this could be related to sexuality.

But we did know if you had pain, uh, you could take a medicine that, uh, addressed the pain. You could do gabapentin, pregabalin, you could do amitriptyline, you could do, um, um, there's a laundry list of these things. You could do SSRI Cymbalta, you know, Um, and, and they're very helpful. And in conjunction with getting pharmaceutical, you know, uh, a reduction of the symptoms, you can then try to figure out a way to find the trigger because obviously finding the trigger as you did is the key way to, to live your life without the need for these medicines.

But until you get to the trigger. You don't have to be on nothing. You could be on something. So that's the trick I would say is find someone to help you with the symptoms of pain, medicine, doctor in particular, [00:27:00] uh, and maybe pedental nerve blocks, maybe whatever, but my point is don't give up on the detective part because that's the way to the cure.

Dr. Linda Bluestein: Yeah, absolutely. If you don't address the root cause, then it's the problem is gonna continue for sure. And that's where it drives me crazy that so often radiologists will put in their findings. They might say they might comment that there's a tar love cyst. They won't say how big it is oftentimes, but they don't put it in the impression.

So if somebody just looks at the impression, it's often not in there. Of course, that's just one of many things that can cause sexual problems right in this population of people. So, and there's even simple things, or I shouldn't say simple, but, you know, I, one of the questions that I got was, well, what about tearing of the tissues down there?

Because people have more fragile tissues if they have Ehlers Danlos, um, so even something like, like that, that's a more maybe straightforward type of problem. Of course it could be hormone related, but, um, could be due to menopause, which is also obviously a hormone, big hormone shift in, in life. But are there simple things that [00:28:00] can be done for, for that?

Dr. Irwin Goldstein: Well, yes, uh, estrogen, testosterone creams can be done. They're compounded. So you need a provider for that. Um, um, I was going to say something. Yeah. Like in sclerosis, we see, I don't know the association. I think there are, yeah, skin conditions are more common in individuals with EDS. And some of the skin conditions we see are like in sclerosis, which makes the tissue less stretchy.

And more likely to have fissures. It's called fissures. They're typically at the six o'clock region of the posterior foreshad. And during sexuality, they, they tear and they really hurt. 

Dr. Linda Bluestein: And in terms of testosterone therapy and, and, or estrogen therapy, there's different ways, right? There's the topical, and then you can also do like testosterone injections or, or different types of, uh, modes of administration.

And I'm sure the contraindications are different depending on how it's being administered, but are you able to share some of those contraindications with us as well? 

Dr. Irwin Goldstein: Sue, do you wanna do it? You're on the, well, I mean, we're you Were on the [00:29:00] committee. 

Sue Goldstein: Yeah. Well, so are you, I mean, the thing is that. Uh, you know, hormones are both systemic and local.

So hormones that you apply to your, we're talking really to the vestibule, it's compounded testosterone and estradiol. It's such a low, low amount of testosterone and estradiol. I don't believe there are any contraindications to that. Um, inside your vagina, we prefer to put, use, um, dehydroepiandrosterone, which is actually higher up in the cascade and becomes, um, testosterone and breaks down to, to estradiol.

And so it's, it's, what's cool about it is it's intracellular. So it doesn't actually leak into the bloodstream. So you don't get systemic, uh, hormones. Uh, it was devised, it was, um, developed by someone whose daughter unfortunately died in her thirties of breast cancer. But while she was still alive, he was trying to give her quality of life.

He knew that she, you know, she couldn't have certain, uh, Fearful of certain hormones because of the breast cancer. And so he developed this whole concept of intercellular, um, mechanism. [00:30:00] He's really, he's, he published, he passed away a couple of years ago. He published more than 1200 papers up in Canada, um, brilliant man.

Um, so that's what we, you know, we like to do. Although you can, you can also put estradiol into vagina if you're not able to get the DHEA. That's separate from from having a systemic. So going into your whole body and you know, testosterone can be delivered by injection, but it's really hard for women because it's such a small volume.

Um, it's, we typically use the gel that's approved for a man and we use approximately a 10th, um, of a man's dose, somewhere between a 10th and a 14th. And it would be, you know, really adjusted based on where your levels are. We would follow up because we believe in, um, uh, in, um, That's the word I'm looking for.

We will even monitor to hormone therapy. So, you know, at six weeks or three months, we would, we do blood tests and make sure they stay in a safe region. So, so what can testosterone do to you? I mean, testosterone can turn you into a man. That's what's transgender women who want to become a man do they get testosterone, but we're not [00:31:00] giving you anywhere near that dose.

People always say, well, I'm going to have a low voice. And I tell people I was a first soprano when I started on testosterone 23 years ago, and I am still a first soprano. Matter of fact, I used to, we still only get up to a high G. I can get to a high. I know, um, who 

Dr. Irwin Goldstein: is your doctor? It gave you the testosterone.

Sue Goldstein: Oh, is that you? 

Dr. Irwin Goldstein: Oh, yes. 

Sue Goldstein: You also get hair growth, but menopausal women get hair growth too. So, you know, you might get a few hairs on your chin kind of thing. So, okay. So you pull them out, you do electrolysis, whatever you want. I mean, to me. The positive having testosterone, the benefits are far greater than, than any of the negative issues.

I mean, most of the things that you hear about causing problems with testosterone is when you're getting a super physiologic level, you're getting too much testosterone into your system. I mean, when we are premenopausal, before you were on an oral contraceptive, we have X amount of testosterone in our bodies.

And all we're trying to do is resupply some of that. Now here, Linda, this may surprise you. Most people most ask a gynecologist how [00:32:00] much estradiol you have in your body and how much testosterone. They'll say, oh, you have far more est, poplin, , far more estradiol. So is that true? Do you have more estradiol or more testosterone and a premenopausal?

I, I'm guessing that that's not true because, uh, otherwise I don't think an est question. So they look at graphs and they say, okay, you have this much estradiol and only this much testosterone, but they don't look at the fact that they, that the actual, um. Um, 

Dr. Irwin Goldstein: units, 

Sue Goldstein: units is different. We women have five times the amount of testosterone in their body than estradiol.

So to replace estradiol and menopausal women and say, well, you don't need testosterone because there's so little is, is bogus. I mean, I just had a DEXA scan. I'm sorry, we're going off target here a little bit. I, but I just had my DEXA a couple of weeks ago and my. I'm a 75 year old woman. I'm not embarrassed to say my age and my dex should really show, you know, losing on my hips and my spine.

I gained 4. 6 percent on my hips. I do not take Fosamax or any of the other things. [00:33:00] I do not eat. I eat very little cheese. I don't drink milk. So. I'm not getting calcium. It's because I had, I take testosterone and I exercise and the testosterone gives me the muscle strength and the energy to exercise and the X and exercise and testosterone both help maintain my bone mass.

And in this case, get it better. So, you know, if we're going to talk about side effects, there are positive side effects and negative side effects. And you couldn't pay me to get off the testosterone because it keeps me healthy as do you. The other hormones that I'm on, and I'm sorry, I went far afield. So I apologize.

Dr. Linda Bluestein: No, no, no, that's okay. And actually I did want to follow up with, uh, two questions. One is, uh, you were talking about monitored hormone replacement therapy. And I know, yeah, so important. I totally agree. Um, there's a lot of people that are doing things like pellets. Now, once you put that in, right, you can't, you can't control the dose for, until you do the next pellet.

So what are your thoughts about that? 

Dr. Irwin Goldstein: We don't do that. We, uh, I. I think, I think it's, I don't know how to say this, uh, for [00:34:00] people who do pellets, uh, I think they have other ulterior motives in place, but I think the issue is, you know, you should do something that you could stop at any time, uh, if there's a reason and you can't do that with pellets.

So I think it's just unfair to the person now, um, um, having said that there are a group of people who love pellets, who think. Uh, it's a fabulous treatment, but it's just a little bit unsafe. Um, the ideal way is to take it daily. Like everybody else takes their pills daily. You could take this daily and, um, um, you can monitor the dose with blood levels.

There's a second monitoring system. We do a thing called Volvoscopy, which is, uh, which is basically an intense camera placed between. The, the legs and staring at the vulva. And, uh, that means the patient gets to see what we're seeing, which is an amazing experience because people have almost have never seen the inside to their vagina [00:35:00] and, uh, Oh, Oh, whatever the 

Sue Goldstein: outside.

Dr. Irwin Goldstein: Or the, even the outside. Most women 

Sue Goldstein: don't look down to see what they look like. They don't even know the body parts to tell you it hurts down there. 

Dr. Irwin Goldstein: When you do valvoscopy prospectively on people who start off with menopause and then go into, uh, uh, issues like, uh, now one year on treatment and two years on treatment, you see the tissues turn pink and healthy and lubricated.

It's just, it's such a pleasant thing to watch the, the longitudinal improvement. So the monitoring is visual and, uh, hormonal blood test based. 

Sue Goldstein: But for people who want to learn more about testosterone and women is which did develop a process of care of how to, um, basically how to use testosterone and women.

One of the things that the FDA says, if you put testosterone into cream, it will layer. It's fine for the topical testosterone and estradiol we put on the vestibule because that's such a small amount. But if you're going to get a tube from a compound pharmacy and what, like a big tube like this, it's the test, the amount of testosterone, the top is different than the amount on the [00:36:00] bottom.

And so that's why the FDA says, don't do that. That's why we. Choose to use an FDA approved product. Um, and the pellets you were just talking about, unless you're using the one FDA approved product for men, none of those are FDA approved, which means that they're, they don't necessarily know the guidelines they have to follow are far different than FDA approved products.

So take a look at the Swiss, um, paper on testosterone. It'll tell you all the pros and cons, all the rationale, the physiology, uh, the safety issues. It's, it's all there, you know, to be seen, to be read. Okay. 

Dr. Irwin Goldstein: Another thing. Go. It's wish. Everybody should read, learn, know about us. We should become members. Linda, you should have to have a member there.

Oh my God. I'm 

Dr. Linda Bluestein: doing a presentation at the issue is conference next month. Oh 

Dr. Irwin Goldstein: my God. Yeah. 

Dr. Linda Bluestein: I will hug 

Dr. Irwin Goldstein: you big time. I can't wait 

Dr. Linda Bluestein: to see you. I was invited to give a presentation, so I'll be talking about so cool sex problems in this population with, with a pelvic floor physical therapist, a friend of mine.

So we were together doing a presentation 

Dr. Irwin Goldstein: pop quiz. One more pop quiz. When did this [00:37:00] was start? What is this year? This is our 

Dr. Linda Bluestein: 25th anniversary. Oh, yes. Yes. Year 

Dr. Irwin Goldstein: 2000, it started. Amazing. 

Dr. Linda Bluestein: Yes. Very, very exciting. That's so exciting. We're going to take a quick break and when we come back, we're going to talk about libido because that is another super important topic.

So we will be right back.

This episode of the Bendy Bodies podcast is brought to you by EDS guardians, paying it forward in the Ehlers Danlos syndromes community, patient to patient for the common good. I am proud to serve on the inaugural board of directors for EDS guardians, a small charity with a big mission and a big heart.

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Okay, so we're back with Dr. Goldstein and with Sue Goldstein and I want to make sure that we talk about libido because these problems can cause So much difficulty with sex, of course, which is so important for relationships and as we talked about, it can be also problems with sitting and wearing tighter clothing or, you know, other aspects of their life.

But let's talk about libido and how, how you have seen these conditions impact people and their libido and what can be done about that. 

Dr. Irwin Goldstein: Okay, before we start, I just want to say, Linda has announced that she has a sexual health issue, the Tarlov cyst, which led to her issues. And I just, as Sue's husband, I know that she has had this libido problem.

And in the medicine, we call [00:39:00] it HSDD, hypoactive sexual desire disorder. And I think it's very cool that both of you Are, uh, we're talking to the public about these things, but you both have at least something. So I think it's very genuine. What's going to happen here. 

Sue Goldstein: So HSTD, it's very, it's very interesting because a lot of women don't recognize that they've lost their libido, that their desire is down.

They just, they're busy leading their lives and they don't let it bother them. They just. Go on. And for some people, they're having duty sex because they love their partner. And once they're having duty sex during sex, they may have responsive desire. And so things feel good. Um, but a lot of times it'll be okay.

You had sex yesterday. How was it? Oh, it was good. Well, you want to have sex tomorrow. Who cares? Uh, you know, there are a lot of different responses. Uh, um, Lillian Arlecule and I co authored a book many years ago. Um, when sex isn't good and I'm not giving a plug to the book. It's not, it's not relevant except that we went out and we interviewed women with different [00:40:00] sexual problems.

And I think one of the most telling interviews with the women with low desire. One woman said, she, I said, I dressed beige. I acted like a wallflower just until I was treated when I was treated, I started wearing fun, funky clothes again. I started driving my stick shift car. I started doing things again.

And I always remembered that, um, for me personally, I literally wasn't having sex very often. And I thought, and it wasn't all that great. And I thought, Oh. My husband is E. D. I'm going to tell this world famous E. D. doctor he is E. D. But I mean, he didn't, there's nothing wrong with him. And literally he came off from the office with the female sexual function function index, which was a brand new questionnaire at the time developed in order to figure out if a medication was effectively treating people in clinical trial, um, conditions.

And I took it and he goes, holy, you've got HSD. It didn't dawn on me as engrossed as I was in the field. [00:41:00] It didn't dawn on me that it was me because we really didn't know a lot about it. Um, and for me personally, at the time, the only really good treatment was testosterone. And I was on testosterone for years.

Um, and the way I put it is, you know, when I was 25 and sex was great. Now I was in my fifties and instead of sex being a 10 out of 10, it was more like a two or three out of 10. Um, but that was fine because that was better than a, you know, a zero out of 10. And, uh, sex, sometimes I was interested and sometimes it was a duty sex and then I became interested and I'm telling my story only because I know a lot of women can relate to this and then one day the testosterone stopped helping me and I turned to my husband and I said, okay, now you have to fix me.

I know what it's like to have my libido back and it's gone again. I recognize at the beginning I didn't recognize that, which is what happens in the most people I knew. I said, fix me. Well, ironically, it was just about the time that Flavanserin, the trade name is Addi, was approved. So I had to wait about three months for it to be available.

And then that October, I got my first [00:42:00] appeal. Now, today we have a second treatment as well, um, called Bremelanotide, or trade name by Lisi. So we have two options out there for women in addition to testosterone. So we have options out there. But for me, what I found most remarkable was that I hadn't realized how much was missing in our relationship until it was back because these drugs are central mechanism drugs.

That means they work in the brain. I tell people they reboot your brain. Somebody said, well, am I going to become a nymphomaniac and go? Well, we were a nymphomaniac when you were 18 and healthy. No, well, it's going to bring you back. So now my my sex is, you know, 89 and 10 out of 10 much of the time. I'm a normal person.

There was a day I'm exhausted and sex sucks. Excuse my language. There's a day that I had too much on my mind because there's something happened at the office and it's hard for me to stay focused on the, on, on actual, you know, the sex, actually being involved with the sex. We all have those things happen.

People without any kind of, you know, issue going on, have those things happen, but I am. My [00:43:00] normal self. And when I, when I say that, that I recognize it was a playfulness that came back in our relationship that I hadn't recognized was missing because it's your whole body and your whole brain that is affected by any sexual dysfunction.

It's not as obvious as the penis doesn't get hard because even if the penis gets hard, you have your brain has to work and your rest of your body is. So it's same thing. So if you, you know, you have EDS and you have. Issues with, you know, your body functioning, but if your brain isn't there, if you're not in the game, if you're lying there and all you're thinking about is, I have to put the Washington, the dryer before it gets moldy, Oh, I forgot to buy milk for the kids school tomorrow.

And if that's all you can think about, it doesn't matter how well your body is working. You're not going to enjoy it. Okay. Sexual activity, so I'm very happy that I live in a time and a generation where I have access to pharmacotherapy. Now, I will tell you, we did a brief [00:44:00] clinical trial in our office, so that's what that's part of what I do.

And we compared women with being on this medication with women who are on the medication, plus having sex therapy with our sex therapist and both showed the majority of people showed improvement. I mean, 70 percent of people get improvement with any sexual health drug, but the people who were on the drug And the therapy had greater improvement more quickly.

So like we started at the beginning of the conversation, you know, having therapy, both sex therapy and pharmacological therapy is, is very helpful. So you can choose to have one, you can choose to have the other, choose to have both. Now, for me, I chose to do the pharmacotherapy and it worked for me. And I have, I'm 75 and I married more than 50 years and I have great sex.

I tell people, my husband has to practice what he preaches. What do you want from me? You know, but, um, But the, you know, what I'm saying is your, your sexual function, particularly your libido being in your brain, it affects so much more than just being able to [00:45:00] have an orgasm, being able to arouse. It affects so much more.

It affects your relationship. It affects how you think about yourself. Um, and I'm sorry, I'm, I'm going, but I'm going to go back to the book that I talked about one of the women when she described having HSDD, everything she described. Was just like a woman who has breast cancer and had a mastectomy and I'm not in any way or shape or form saying that the sexual problems are the same as having cancer.

They're not. I mean, let's be honest, but the descriptors, she didn't feel like a woman. She didn't feel whole. That's what women who are survivors will say to have such a powerful message from these women were, you know, in their twenties and in their thirties and. In relationships. One woman said to her husband, I just, I'm not interested.

Go have sex with somebody else. Just be safe. Come home to me. Literally said this because they, they had a strong enough relationship. They love their partner. But if you had bad enough [00:46:00] HSDD, it gets to the point that you actually will have, you get touch aversion because touch can lead to cuddling, can lead to kissing, can lead to sex, and you don't want sex either because it hurts or because you're not interested, whatever it is.

And so you have, you know, this is how relationships can get destroyed. So we have to remember that it's our choice. It's our body. We can choose to be treated or not, but there are treatments out there. And if it, if you feel you have something going on and it bothers you and you can't get help at home, just keep looking because there's somebody out there that's going to help you go on the website.

If you, you know, if you're, if you identify as a woman and. Find someone that can help you because there are people out there. 

Dr. Irwin Goldstein: Let me, uh, bring this back to, to Linda. Uh, and let me do another pop quiz with Linda. What are the four things that typically happen behind the low interest? What are the four things that typically explain low interest?

So Sue mentioned neurotransmitter. So [00:47:00] the, the flabancerin sort of lowers the high serotonin, the valisee raises dopamine. So that's the neurotransmitter issue. The psychology, she said, I remember bringing up the psychologist. She mentioned she's on testosterone, which is hormone. What is the fourth factor, Linda?

Pop quiz. 

Dr. Linda Bluestein: I don't know. I have no idea. Well, you had a tarlosis, 

Dr. Irwin Goldstein: so neurologic issues. Sure. So if, if the mass effect of the tarlosis or the. You know, the, the dural inflammation from an annular tear, uh, injures the nerve roots. So it's hypo functioning. If it's not sending a lot of information, so you're touching your genitals, but you're not getting a lot of information flowing to the, to the appropriate brain centers, then you're going to have low libido.

I mean, you know, if you don't feel. You're not gonna have that much interest. So we see a lot of women with low interest who have EDS, who have tarlosis or annular tears, who, after we do, it's kind of [00:48:00] cool after we do our, uh, the, the, uh, injection that you had that focal injection in your back, uh, they, they get their sensation back.

Really cool. 

Dr. Linda Bluestein: And, and when, if somebody has PGAD or persistent genital arousal disorder, is that almost the opposite or not really? 

Dr. Irwin Goldstein: It's not almost the opposite, it is the opposite. Instead of the annular tear or tarlof cyst irritating the nerve root, causing the nerve root to be hypofunctioning, that's the libido low sensation.

If it's hyperfunctioning, then they're getting information unwanted, unreletting. Uh, into the region called the paracentral lobule, which is where all the sensation for the genitals and the lower extremities exist. 

Dr. Linda Bluestein: So some other questions that people posed, one of them was how to address sexual dysfunction and lack of sexual sex drive and inability to orgasm caused by POTS and or dysautonomia, especially if they were taking beta blockers.

Do you have any thoughts about that? 

Dr. Irwin Goldstein: Whoa, that's very [00:49:00] specific. Uh, I would have to speak to that person. We do courtesy calls. So, uh, it's my, it's my, uh, sort of, uh, uh, ability to give back. 

Sue Goldstein: Yeah, it's, 

Dr. Irwin Goldstein: I think it's, uh, I view it as, uh, uh, my opportunity to teach people who can't, they live somewhere else or they can't afford it.

I get 10 minutes to speak to them. I don't. Treat them because they're not my patients, but I'll give them information. Um, I think, uh, someone with dysautonomia and beta blockers, it's a little more specific and I would need to get a little more information, but I, we can help virtually almost anybody, uh, with logical and rational strategies.

Sue Goldstein: So we're not gonna promise 

Dr. Irwin Goldstein: that's a bio-psychosocial, okay? Right. 

Sue Goldstein: We're not gonna promise anyone that you're gonna be 100% who you were before the problems. We can't necessarily cure somebody, but we can treat somebody so they can live. You know, if you have, if you have for instance, um, PGAD, that's nine out of 10 and we can get it [00:50:00] done to two out of 10, you can function in this world.

Some people we totally cure and some people we can't. So I don't want people to think that everyone walking through a door is gonna leave, you know, 100%. Mm-hmm . Who they were before they had their problem. But we don't give up on patients. You know, we will continue to work. What we know today is so much more than what we knew two years ago, which was so much more than what we knew two years before that.

And I think that's the most exciting thing is, you know, call a patient back that, you know, I didn't know how to deal with this before, but we've just figured this out, come on in and let's try this. Um, because we are, we are human beings and as human beings, we are learners and we can learn new things and then teach new things and then help people help more people.

Dr. Irwin Goldstein: I have a cool story. A Linda story. So it's the year 2001. I don't even know where you were in the year 2001. But I was, we won't go there. So there is a psychologist at Rutgers, Sandra Lieblam. She actually was the first president of this wish and she reported. [00:51:00] On a condition called PSAS, Persistent Sexual Arousal Syndrome, which merged into PGAD because people didn't like the word sexual arousal, we flipped it to genital arousal, which was more appropriate because they were not sexually aroused, they were, they were, it's a.

There's no sexuality going on in PGAD and, uh, the only, so she, she's the psychologist and I was the biologist. So I got all of her PSAS slash PGAD patients and all we did was give them pharmacotherapy. We presumed there was a neurotransmitter excess, the opposite of the one for low libido, instead of too much inhibition and too little excitation.

We believe that PGAD was. Too much excitation and too little inhibition. So we, we developed strategies to lower the excitation and to increase the inhibition. Uh, a drug tramadol is an opioid and that increases inhibition because opioids inhibit. So we would giving a lot of these PGAD patients tramadol.

And then it's [00:52:00] 2012, so that's basically 11 years later, and I get a, uh, editor of a journal, and Dr. Barry Komisarek, happens to also be at Rutgers, submitted a paper in support group population of PGAD patients, where he asked them to get pelvic MRIs, and he said, Oh my God, there's like 10 times the number of tarlocysts in the PGAD community than not.

And I pick up the phone and I said, Barry, uh, uh, if you, if we publish this paper, it's good science, but if we publish this paper, you're going to force everyone with PGAD to get a pelvic MRI. And, and, and he said, well, it's good science. You have to publish this paper. And then we started doing pelvic MRIs and we were seeing they had.

Not so many tarlases, but way more annular tears in the lower part of the pelvis. So we flipped them into lumbar MRIs, but where I'm going is it's just a continuous learning, you know, everybody participates as on some level, including especially the patients. But we are constantly, we're, we're doing things today that I wasn't even doing six months [00:53:00] ago, just, just to be, to be quite honest, 

Sue Goldstein: which is why I'll never retire because he keeps doing new things.

Dr. Linda Bluestein: Yeah. I, and I'm glad to hear you say that because in my practice, it's the exact same way. I, I have a small private practice and I do things now that I, Didn't do six months ago, because like you said, we're continuously learning. So, so that's really exciting. And I do want to clarify with PGAD because some people might think, oh, that sounds like a great thing, but it's not right.

Can you explain? Persistent channel 

Sue Goldstein: arousal is, is the great thing. Persistent channel arousal disorder. Is the point that you can't concentrate on anything because you're constant, imagine being a second grade teacher and your, your clitoris feels like it's constantly aroused with all the seven and eight year old boys around you, you can never tell anybody in your school, but you have to slip into the bathroom to masturbate because then you have maybe an hour or two hours of relief from that arousal sensation.

Uh, you know, this is not something that people can talk about, but their lives are hell. Um. They get in a car and the vibration starts the arousal sensations and an arousal [00:54:00] isn't necessarily the clitoris feeling aroused. It can be any of the other dysestesias, the burning, the cutting, feeling like razor blades, you know, all of these different sensations.

And it occurs in all genders. It's not just in women. Um, but they literally, you know, these are the people that can't, they have difficulty with jobs. They have difficulty working. They have difficult family. They've difficulty maintaining relationships. And how do you explain to your children? I can't do this with you right now because I can't get out of this arousal state.

Um, we, there was a gentleman who kept Matt, he had to masturbate to ejaculation seven or eight times before he could leave his house. Um, because otherwise he would just get a spontaneous erection and, and then ejaculate in his pants, which is so much more obvious, but it's, it's such a difficult. Problem for somebody to have and when you examine them, they usually don't actually have a clitoris.

That's aroused. Um, it's that's, you know, that's engorged. It's the sensation in their brain. They're getting the mixed messages through, you know, through the, [00:55:00] because of the tarlacist or the annular tear. But it's not something that you can learn to live with when it's persistent general arousal disorder.

We do know people who have this in a very mild way, and for them it's great because they're always ready, but they're not to the point that they can't live a life. I mean, it's, it's awful. 

Dr. Irwin Goldstein: I call PGAD the monster and, uh, of all the conditions, I hate to say this conversation, but of all the conditions that I've seen in all the years, I've been doing this many decades, that's the one associated with the most suicidality.

Uh, I have sadly a whole bunch of individuals who are not with us today because they could get no relief from their PGAD. 

Dr. Linda Bluestein: Oh, that's terrible. And, and in terms of what options there are, besides if you do have a Tarlov cyst and potentially determining if you're a candidate for surgery on the Tarlov cyst, what, if anything else can be done if you have PGAD?

Dr. Irwin Goldstein: Well, again, the, the original biologic strategy was [00:56:00] to, to, to make inhibition higher in the brain 

Dr. Linda Bluestein: using the tram at all, 

Dr. Irwin Goldstein: the tram at all, or, uh, um, a tryptamine or all the other things, anti epileptic epilepsy is like a focal seizure. So neuroleptics. Things that stop neurologic transmission or impede neurologic transmission.

So neuroleptics are, are the, are the key. Um, and SSRIs play a big role. 

Sue Goldstein: But those are, I mean, you have to look, there are 

Dr. Irwin Goldstein: band aids for sure, but at least, you know, we have, I have a woman. We started practice in 2007. She, she saw an article in the local newspaper, sexual medicine, blah, blah blah. So she came at 2007, so it's 17 years later.

It's 2024. She's still on Tramadol, uh, a as her prime therapy. It's, it's worked fabulous for her. She's had a normal life and, uh, she, you know, she has an annular tear, doesn't wanna deal with it. Uh, but God bless. That's, that's her, that's her call. [00:57:00] 

Sue Goldstein: But I was going to say, ISWS published a paper on PGAD, and they really changed the way we look at management of all sexual health issues, dividing the body into five regions.

And so, with, with, with anything you have, whether it's PGAD, whether it's a muted sensation problem, you need to find where the problem is located, whether it's region one, two, three, four, or five, and then go up. And so, when you're talking about annular tear and, uh, and sacral, uh, Tarlof cysts, we're talking about a region, a region three disorder, but you could have pedendal neuropathy that's causing it.

We have a patient that comes in once a year for pedendal nerve block and her PGAD is totally in control. When she started she had to do it every three months and every six months and now it's literally once a year. 

Dr. Irwin Goldstein: Okay, pop quiz, pop quiz to Linda. What is the most common reason for having a region two, uh, uh, pathology causing PGED?

Dr. Linda Bluestein: I don't even know what region 

Sue Goldstein: two is. 

Dr. Irwin Goldstein: Oh, it's your, your pelvis perineum, your crotch area. So if you 

Sue Goldstein: need a pelvic nerve block to get you better, he's saying what caused that problem, what's the most common reason to cause a problem there? [00:58:00] 

Dr. Irwin Goldstein: I don't know. Same bike riding. She was a spinner. She did an hour of spinning and sometimes she did an extra hour because the, the, the instructor needed other people there, uh, every day and the banging.

So this is her crotch. This is the, the banging. And she developed injury to the pineal nerve, sent too much message to the brain. And that was her PICA. 

Sue Goldstein: But we also talked about people with vestibulodynia, which is a, you know, a mast cell disease. Sometimes instead of the vestibulodynia causing pain as is normal, it causes PGAD sensation.

So they have a vestibulectomy and that treats that. So you need to figure out what the trigger or triggers, because often there's more than one trigger, you know, and then treat that. And the other thing is that stress will always increase those triggers. So matter what the. Physical trigger is for PJD. It is so important to have therapy, to have stress therapy and how to deal with the stress in your life, because no matter what it is, whenever stress occurs, it's going to trigger in and of itself, the PGA D [00:59:00] symptoms.

So that, you know, having a multidisciplinary approach is so important is typically with PJD. It's not just one thing. And you know, those are your EDS patients who have issues that that's huge, but the stress is important and the, you know, everything else examining the. Full person and caring for the full person is so important.

Dr. Linda Bluestein: And I think that's an important point about stress because any of the mast cell conditions especially, which of course interstitial cystitis also can be, you know, a mast cell condition. So if you have, uh, any, any painful condition also, uh, stress is going to exacerbate it. And I remember one of my doctors quite a few, but this is many, many years ago, but I did notice that stress made my pain worse.

And she said, well, that's because it's in your head and they knew I had a Tarlov cyst at that time, but she kept telling me, nope. That is absolutely not the cause of your problems. 

Dr. Irwin Goldstein: But your trial of cysts was incidental. No, that was a joke. I'm sorry. So I want to spend two minutes on IC because I have a personal, uh, [01:00:00] research, uh, uh, effort on IC.

So interstitial cystitis is a real phenomenon. But it has to have on cystoscopy, this ulcer at the, the dome of the bladder called a Hunter ulcer. And I have to say that a hundred ulcers are pretty rare. And that a lot of women are given an IC diagnosis, interstitial cyst, uh, cystitis diagnosis who don't have Hunter ulcers.

And I'm just going to say to you and to them and to everybody on this planet, they don't really have ic. Okay? Okay. And they, they get their bladders, uh, with installations of every drug on earth, lidocaine and various other things. They get nerve stimulation of their, their nerve in their ankle because that's somehow helps ic, but it doesn't.

And they just go on and on on IC treatments. What is totally amazing is the vast majority of those people have the vestibule of any of the neuroproliferative kind, and that's the true basis for their condition, and it's basically a referral system. So when we numb, you know how [01:01:00] you numbed your tarlocyst, we have the ability to numb the vestibule.

Okay. And then we have the women with I see urinate in the time that their vestibule is now numb. And they said, Oh my gosh, I don't have the urges. They don't have the frequency. And then when the numbing wears off, they go back to having it. And the I see symptoms go away when we do the vestibule, the treatment for neuro proliferative vestibular denial and on and on.

There is a substantial number of people with I see. Who are diagnosed with IC, who don't have IC, who really have other explanations, the pelvic floor, for example, uh, yeah, you know, the, the, the outside, the bladder concept of IC is really strong. 

Sue Goldstein: And we published on the, the relationship between vestibulodynia and, and what.

People have been diagnosed as I see. It's not. So I think one of the cues is if you keep being given different treatments for your I see and it's not working, it's because you don't have I see. I imagine that most of those treatments probably work if [01:02:00] you actually have the hunters ulcers and have I see.

But You know, it's, it's like the PGA D we had a woman who came and said, I want to make clitoris, she wanted her clitoris cut off because that's where she was, you know, she, her arousal was so painful, but she had no physical arousal And the problem is that the pain she was feeling is in her, in her brain.

So when you talk before about something saying it's in your head, we differentiate between it's in your head, which means, you know, psychologic versus in your brain, which is you have stuff that goes on. In this area, that is your brain. It is in your head, but it has chemicals and it's structures. And, you know, you, you may sense that the, that you're having pain or arousal in another part of your body, but without your brain, you're never going to feel pain because you actually, it's your brain that processes it.

I 

Dr. Irwin Goldstein: want to say one thing about the woman who wished to have her clitoris removed. Luckily, she didn't get her clitoris removed. But there is another woman who did find a doctor to remove the clitoris. And as you have phantom limb pain when you remove [01:03:00] the leg, she now has phantom clitoral pain. Because the original pain was never coming.

It was perceived as coming from the clitoris, but physically wasn't coming. She had one of these tarlof cyst things, and that was the true basis for her clitoral pain. 

Dr. Linda Bluestein: Wow, that's horrible. So for people who aren't familiar with phantom limb pain, so, you know, you and I actually had a patient not long ago who had CRPS who had an amputation and I was like, uh, she made the decision completely independent of me and I was really concerned.

You know, is this actually going to help? She had very, very severe CRPS or complex regional pain syndrome. But yes, after people have an amputation, they can feel the A painful limb that's no longer there. So how do you treat that limb? That's no longer there. And so I really appreciate you explaining the difference between the brain versus the head because of course, that is where we sense everything anyway, right?

We sense everything up here in our, in our head. So, uh, at the same time that, you know, saying, well, no, that pain is in [01:04:00] your head. It's like, well, yeah, that's where you're feeling it is in your brain. Um, which your brain of course is inside your head, but that doesn't mean that there isn't something physiologically going on getting back to the biopsychosocial model.

Dr. Irwin Goldstein: The other thing that we haven't talked about with POTS and with EDS and with IC is the allergies. There's an awful lot of allergies, allergic responses to medicines, allergic responses to foods, allergic responses to pollens outside in the air. Probably the Fire in Los Angeles is bringing all types of other allergies into play.

That 

Sue Goldstein: doesn't mean everybody who has allergies has, has any kind of mast cell disease. I mean, I have pollen allergies and I don't have any other mast cell aberrant activity. So I don't want people thinking, well, I, I, you know, I, I sneezed from ragweed. So therefore I must have EDS. It doesn't look like that, but it's this constellation of symptoms.

And I'm, I'm sorry, I cut you off, but I just, I always worry about people hearing about one thing is that, Oh my God, I've got to have all these other things. Right. 

Dr. Irwin Goldstein: Well, there are even other mast cells that we haven't talked [01:05:00] about, like Raynaud's disease. It's another common issue. So they have their fingers and they go into, well, you're not going to get this in San Diego, but like in Boston or Colorado, the tips of the fingers become white and purple, and it's very painful.

And they have a vasospasm. Based on cold. And that's also highly related to aberrant mast cell condition syndromes. 

Dr. Linda Bluestein: And when you were mentioning some of the different allergies, I think an important one that I discovered for me was a soap and especially, you know, we wash all parts of our body and some parts of our body like.

You know, if you think about the perineum, which is basically the our private area, um, you know, if we're not using a soap that is very, very gentle and fragrance free and all of that, you know, for a lot of people that can cause a lot of problems and that's a simple change that people can make 

Sue Goldstein: or the detergent you wash your clothes in or the toilet paper you use or the sheets you sleep on.

We had one woman. So we had a woman. 

Dr. Irwin Goldstein: Yeah, yeah. It's the same woman. Yeah. She, she was [01:06:00] at, at home. She was fine. She went into a hotel which used a different toilet paper. Mm. And then she got severe pain, uh, during intercourse as a result. 

Sue Goldstein: But you have to have that predisposition. I mean, the, you know, most people don't.

So most people aren't going to have these kinds of reactions. We don't know what the genetic predisposition is to have these mast cell diseases. Um, and that's something for the future. I mean, we work closely with an allergist here in San Diego who is very interested in mast cell. Um, you know, there are people around the country who have an interest in mast cell, um, or in, you know, one of the specific things like the EDS or vestibulodynia and things like that.

But, um, we just don't know enough about these diseases, but we're learning constantly. And we, we looked at our vestibulectomy population and more than half of them had multiple other mast cell aberrant conditions, not just the vestibulodynia. And I'm convinced if we had done a more thorough questioning of all like 20 [01:07:00] comorbidities that they probably every one of them had at least one.

As I say, it doesn't mean that everyone's going to have things, but you have to go through life assuming, well, you know, I could react to something. I need to think twice. We had a woman who put hair dye on her on her pubic hair. Um, not a very smart thing to do, but like, why would you even want to do that?

I don't know. You know, so be sensible and live your life in moderation and hopefully everything will be okay. 

Dr. Linda Bluestein: Yeah. And it's surprising. Sometimes the Changes that you can see. So I treat a lot of people with mass cell activation syndrome. Of course, because I treated a lot of people with with EDS spectrum disorders.

And when you stabilize the mass cell activation syndrome, we stabilize the mask cell. Oftentimes they're what was labeled anyway as interstitial cystitis or bladder pain. Um, it's probably bladder pain is probably more accurate and that in most of those instances, but oftentimes they report that those symptoms get dramatically improved.

Dr. Irwin Goldstein: Yeah, awesome. [01:08:00] Yeah. Very cool. 

Dr. Linda Bluestein: Well, we're probably getting pretty close to the end of our time here. And do you 

Dr. Irwin Goldstein: have any other pearl questions from the individuals? 

Dr. Linda Bluestein: Well, well, uh, we, I, we did have another question about, um, this question here. This person asked any tips for talking to a potential partner about pain with penetration.

It's kind of hard to work this into a conversation in the early phases of dating. Wow. That's a great question. See 

Sue Goldstein: That's a good question for a therapist, but yeah, no, I think, I 

Dr. Irwin Goldstein: think that, uh, uh, you don't have to have traditional penovaginal sort of sexuality. You can have all types of other sexualities that end up in orgasm, um, without the need to have pain, 

Sue Goldstein: but you still have to have the conversation for why you're not having penovaginal pain and being a vaginal activity.

I mean, I think. You know, you can say, I really, you know, I really care about you [01:09:00] and I want to be honest with you and I have these issues and I'm working on and hopefully at some point, you know, I will no longer have pain with penetration, but I'm being, I'm being honest because I'm hoping this relationship will stay and we see patients that.

Um, I remember this is the partner. The husband said now that she knows what's wrong with her and she's going to have surgery, I haven't wanted to be in this relationship for a long time, but I didn't want to leave her while she was struggling. But now that I know she's going to get better, I'm leaving her.

I was like, Whoa, you know, you would think that now that she's better, he can say, okay, now we can have more normal life, but I, I think being honest. Is so important because we see too many people who don't want to get to that conversation and so they break off the relationship before they get to the intimacy portion of their lives and they keep, you know, and then eventually they wind up not even going out at all and then not even go out with the girls or the guys because they talk about their dating history and they wind up staying home and, you know, being on their mom's couch and that's no way to live.

So, If you, if you're in a relationship with [01:10:00] somebody that you really think might be a long term relationship, I think you open with, I want to be honest and this is what's going on. And how, you know, I hope that you help me through this and I'm hoping that I will, you know, come out the other side. I don't expect that I will be like this forever because I'm seeking treatment or whatever, but you know, I just want you to know now, and this is why can we think about alternative forms of intimacy for the moment.

Dr. Irwin Goldstein: You know, I had a woman who had horrible dyspironia or painful penetration, and they wanted a family, um, and they couldn't have a family in the context with penovaginal intercourse, but, uh, they did, uh, intrauterine insemination. She went to under anesthesia. They did his sperm a wall under anesthesia. They administered the semen into the uterus through the cervix, and she had a child and that's.

All they wanted in the first place, uh, as at least from her point of view, that's what she wanted. So there are ways that's the point. I think, uh, being honest and, [01:11:00] and realizing that if you can find the sex detective sort of person who is familiar with money alternatives to the usual, then you can, you can get help.

Sue Goldstein: And a partner who's supportive. 

Dr. Linda Bluestein: Yeah. And I, and I think the conversation with. That, uh, with a therapist and what you said, Sue, especially at the beginning of that question, I think is really, really important. And I do want to just say, because I feel like it was mentioned a couple of times, and I just want people to know what a vestibulectomy is, because that's, that's like an extreme treatment, right?

That, of course, probably most people don't end up having, but I, if you wouldn't mind, just very quickly, before we wrap up, explaining what that is and why you might do it. 

Dr. Irwin Goldstein: My honor and privilege. So it's basically the size of a thumb that goes around the opening to the vagina. It's not an awful lot of tissue.

So the good news is if it's infiltrated with nerves and mast cells, which is the similar thing to EDS and endometriosis and I see and all these other things, it's an infiltrative mast cell problem. Um, You can remove the tissue, uh, [01:12:00] because there's no excess infiltration in the vaginal canal. There's no excess infiltration in the, in the vulva.

So you have this sort of cool opportunity to rid the body of the, you know, the 1 million nociceptors that when you tickle, it just burns. So while it's an extreme therapy, the fact is there's no medical therapy. Well, for dealing with too many nerves and muscles in a tissue, it's infiltrated. I mean, you either deal with it with alternative sexual, uh, events, or you deal with it by removing it.

That's yeah. So in 

Sue Goldstein: 2025 surgery is the only treatment for neuro proliferative, which is the excess nerves and muscles and vestibulodynia, but it's only for that. We would not use vestibulectomy for any other disease state. At least at this time that we're aware of. So it's wonderful to have a treatment and you know, obviously they have to heal postoperatively, but our patients, you know, after they're healed, even the gynecologist can't tell they've had this removed because, because the tissue was [01:13:00] so small.

Yeah. And you know, once the pain is gone, you live, live the rest of your life perfectly. Normally can, you know, deliver children, all of this. So there's, there's no downside. Other than obviously you having surgery and you have to recover from surgery. 

Dr. Linda Bluestein: And that's a subset of people that have vestibulodynia or pain in the vestibule.

This is a subset of those people that have the 30 

Dr. Irwin Goldstein: different reasons for having pain. Sure, sure. This is one of them. But it's highly associated with POTS and EDS. And endometriosis and allergies and Ray nodes and skin conditions and asthma and sleep disorders, and you can go on and on. There's just lots of, 

Sue Goldstein: we see it a lot in our practice because gynecologists are only really comfortable taking out little pieces of the vestibule in general.

So there are only a few people in the United States that are really comfortable doing a complete vestibule ectomy blap. So we have a lot of patients that come from all over to us. Um, and so that's why it's something we see a lot of, because if you have [01:14:00] issues, it's more likely that your local doctor can help you with that.

Um, if you have spine issues, you'll often come to us because most people don't understand that as well. So we're a tertiary referral center at San Diego sexual medicine. We're seeing people with the stuff that's too difficult to be dealt with by the local doctor, too challenging with in terms of time management, in terms of knowledge, in terms of equipment, whatever it is.

Um, and so we always say we treat the zebras of sexual medicine. And when people call and they say, I have really weird stuff. I don't know if you want to see me. Dr. Goldstein thrives on patients with really weird stuff. Um, you know, I, the way I put it simply is if you had erectile dysfunction and Viagra would treat you, you wouldn't be coming across the country to see us.

We're seeing the other people. Yeah, 

Dr. Linda Bluestein: yeah, absolutely. That totally makes sense. And I, and I like to finish every episode with a hypermobility hack. Um, so can you, uh, give us like a, you know, you've given us, of course, a lot of great little, uh, clinical pearls, but do you have any other kind of quick wins for people?

Dr. Irwin Goldstein: So [01:15:00] when I don't know what's going on in a person's list of complaints, I asked them what they did when they were a kid. So really, yes, 80s people are very commonly gymnastics oriented because they're, they're, they're bendy bodies. Right. Which is your show is so apparent and they can do all these back things and they can do gymnastics.

Seriously. So if someone gives me a history that, uh, when I was young, I did ballerina gymnastics. I did these dance things because I was so mobile. I said, Oh, really? Um, tell me more. And, and, um, yeah, I have, if, if it's possible, I have them stand up, put their flat feet on the ground and they could easily touch their palms of hands right to the thing or move their elbows in odd positions.

And I said, okay, this is orienting me towards a mass cell aberrant condition. [01:16:00] Uh, let me ask you more specific questions. Then we get into IC and we get into pain with penetration. So now the thing is for those individuals who have pain. We're now doing 4mm, I don't know if you can imagine what 4mm is, but it's not any more than that, little biopsies of their hymen.

And the beauty of biopsying the hymen is because it's easy to put a lidocaine injection into the flap. The hymen is just a flap on the side of the vestibule. It's a vestibule tissue. So by numbing the vestibule, it's easy to take a little biopsy of it. And, and, you know, in a few weeks I can tell them that they have too many nerves and muscles.

It's really an awesome opportunity to get a glimpse into the problem. Anyway, we 

Sue Goldstein: talked about everything changing. Uh, we only started doing that, I think in October. So we're constantly changing our practice. You know, to help. I don't have any, I don't have any hacks for you for EDS. I'm sorry. I'm not, I'm not really not, not my specialty per se.

I love seeing patients. I love helping patients. I love teaching patients. [01:17:00] I love teaching providers, but I'm, I leave that to him. 

Dr. Linda Bluestein: You already gave us a lot of hacks and I, and I just want to circle back to the hymen biopsy. Is this something that you can do even if the hymen is no longer intact? 

Dr. Irwin Goldstein: There's no such thing.

It's always there. 

Sue Goldstein: No, no, no. It's not intact, but it's still there. Intact just means that it's not one solid surface across. There's always time in there unless until somebody surgically removes it. 

Dr. Irwin Goldstein: Linda, you will have your hymen until you are six feet under. I'm just going to tell you, 

Sue Goldstein: okay. Okay. And if we have clinicians listening to this, you do not want to do a biopsy of the vestibule, that would be extremely painful.

And that's why, since we now know that the hymen is the same tissue as the vestibule has the same nerves and mast cells, and it's, we can do the biopsy from that and get the same information to know that this is what's causing the pain in the vestibule. So, okay. If 

Dr. Irwin Goldstein: you're going to do this, you have to send it to a lab that measures.

The immunohistochemical staining. Right. For, for nerves and [01:18:00] mast cells. You're not gonna get it on just a regular, uh, pathology examination. Right. 

Dr. Linda Bluestein: Hospital sends it out to a specialty lab. Yeah. Which is really challenging. I try to get them to do that when, whenever someone's gonna have a colonoscopy or an upper endoscopy and Yeah.

Sometimes they find the mast cells. Yeah. Yeah. Sometimes they do it, sometimes they don't. It's, yeah, it's quite frustrating. 

Dr. Irwin Goldstein: So we have colon biopsies, we have endometrial biopsies, we have a lot of other tissue biopsies showing the same thing we see in the vestibule, the infiltrative nerves and muscle.

Sue Goldstein: Fascinating. Now the next thing we need to do is to figure out how to stop all that so we can, so no one has to suffer from this in the future. Right, right. 

Dr. Linda Bluestein: Absolutely. And speaking of, uh, you know, your continued efforts at research and all the amazing things that, that both of you are doing, if you could just finish up by telling us, you know, if there's anything special that you're up to that in terms of research or projects and also where we can find you.

Dr. Irwin Goldstein: So you, 

Sue Goldstein: well, a lot of our, a lot of our research recently has been in regenerative therapies, um, in particular, um, men with erectile dysfunction, looking at devices that can [01:19:00] potentially regenerate the quality of the tissue in the erection chambers. Um, we're still doing research, um, for women with orgasm issues, um, we're always doing chart reviews.

Uh, that's a lot of our research we do with students so that they have experience doing, doing research, looking at our patients. date, patient database, um, and compare, you know, whether we're comparing them to mass cells and nerves, or looking at the surgery that our spine surgeon does. We work, we work very closely with Dr.

Cho Kim of XL spine. Um, so we, so we have a lot of different kinds of research projects, but you can find us both at San Diego sexual medicine. Um, you can find us online, sdsm. info. Uh, lots of information. We have a huge website. Give us a call at 619 265. 8, 8, 6, 5. Um, we do offer 10 minute courtesy calls.

They're all, they're all with Dr. Goldstein. It's fact finding. He's not going to diagnose and treat you, but it's hot. It's how we start it. And he figures out what testing we would do. And then based on that, you can decide whether or not I want to come into, you know, come into us, but San [01:20:00] Diego sexual medicine.

And thank you for having me on today. 

Dr. Irwin Goldstein: And Linda, thank you. Oh my gosh, what information we have shared. It's fabulous. 

Dr. Linda Bluestein: Yeah, I'm so grateful to both of you. It was so great to get to do this and I take it I'll get to see both of you next month. Yes, absolutely. Go whisper. We're both speaking as well. I figured that you were.

So yeah, I'm really excited about that. This is just, you know, That organization and what, and what both of you are doing is just so incredibly important, uh, for, for, for people and quality of life. And, and I'm just so grateful to you for taking the time to speak with me. Cause I know you're both extremely busy and it was so great to see you again.

Dr. Irwin Goldstein: Thank you so much, really. 

Dr. Linda Bluestein: Thank you.

That was certainly an interesting conversation with Dr. Goldstein and his wife, Sue Goldstein. They are such an incredible wealth of knowledge. And I hope you found this information really, really helpful for you or someone that you know, or if you're a clinician for your practice. And I [01:21:00] 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 review and telling a friend or family member about the podcast. This helps raise awareness about these complex and often under recognized conditions. If you'd like to dig deeper, you can meet with me one on one by checking out the available options on the services page of my website at hypermobilitymd.

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