Hidden Causes of Painful Sex with Dr. Irwin Goldstein & Sue Goldstein

[00:33] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility MD. Today we will be speaking with Dr. Irwin 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. I'm really excited to get to see them next month because I will be speaking at the ISSWSH, which stands for International Society for the Study of 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.
[01:21] Dr. Goldstein is the director of sexual 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 7 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 ISSWSH and 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 ISSWSH 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 Female Sexual Pain Disorders and the author of multiple peer-reviewed papers. Sue is a past president of ISSWSH as well as the industry relations chair.
[02:30] 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 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. Here we go.
[03:01] I am so excited to be here with Dr. Irwin Goldstein and Sue Goldstein, and I'm going to say right off the bat, Dr. Goldstein is my doctor. We are not going to discuss the specifics of my case today, except for the fact that when I was recovering from my Tarlov cyst surgery, I did actually travel to San Diego so I could get his expertise. So super 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 definitely can impact sexual function. So thank you so much for joining us today.

[03:39] Dr. Irwin Goldstein: We love you, Linda.

[03:41] Dr. Sue Goldstein: So excited to be here.

[03:43] Dr. Linda Bluestein: 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?

[04:07] Dr. Irwin Goldstein: Oh my gosh. How many hours do we have here?

[04:11] Dr. Linda Bluestein: Right.

[04:12] Dr. Irwin Goldstein: Well, connective tissue, let's argue, is really important towards everything and anything we do. And sex, clearly. And the mechanisms of sex, 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. People who have connective tissue problems get Tarlov cysts and annular tears, and those things sort of change the course of the sacral spinal nerve root that's carrying all this cool information to the brain. It causes it to be irritated, and then people get unwanted, unhappy feelings called dysesthesias, including unwanted arousals and things like that. So for at least that reason.
[05:04] But there's another important reason, and that's the vestibule, which is the entrance to the vagina. There is a crossing of the conditions of people who have aberrant mast cell activity. Ehlers-Danlos is an example of a condition with aberrant mast cell activity. And there are women who have pain during penetration, even as early as their first tampon, that fits into this mast cell aberrant condition sort of syndrome. That's called neuroproliferative vestibulodynia. So we'll see them from a vestibulodynia perspective. We'll see them from a neurologic perspective, and sadly, it's extremely common.

[05:58] Dr. Linda Bluestein: Sure. And vestibulodynia is pain in the vestibule. Is that correct?

[06:03] Dr. Sue Goldstein: Correct.

[06:04] Dr. Linda Bluestein: Okay.

[06:04] Dr. Irwin Goldstein: You can have nosodynia, chinodynia, foreheadodynia, and vestibulodynia.

[06:11] Dr. Sue Goldstein: Now he's just being silly.

[06:13] Dr. Linda Bluestein: 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 people for questions — and we have some great questions that we will address in the second half of the program — people were asking questions about things even like sexual positions and things like that. So there's a lot of different ways in which these conditions can impact the ability to have sex.

[06:40] Dr. Irwin Goldstein: No question about that. Sue, you talk.

[06:44] Dr. Sue Goldstein: There are really two different things going on with that last comment that you made, Linda. 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 the mast cell conditions that you might have — if you have irritable bowel syndrome and interstitial cystitis, you may not feel comfortable having sex. You're afraid of what's going to happen.
[07:15] But vestibulodynia — it just hurts. And it's not just hurting during sex. It may hurt to wear tight pants. It may hurt to sit for a long time. So it really 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 is a huge deficit in your quality of life.

[07:37] Dr. Linda Bluestein: And it can 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.

[07:47] Dr. Irwin Goldstein: But the good news is— sorry, you talk.

[07:50] Dr. Sue Goldstein: I have a patient right now who is in nursing school, and she's had to take 3 semesters off until she can get all of this taken care of because she can't sit in a classroom. So it's not just the sexual part, even though it's a sexual organ if we're going to talk about the vestibule. It can stop you from just plain living.

[08:13] Dr. Irwin Goldstein: So we didn't talk about endometriosis, which is another associated condition with Ehlers-Danlos as part of a condition with aberrant mast cell activity. And endometriosis is just awful because your periods are ridiculously painful, you bleed a lot. Penetration is okay. It's the thrusting 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 issues.

[08:45] Dr. Sue Goldstein: And again, you're missing days of school, you're missing days of work because your menstruation is so painful from the endometriosis, far beyond the people who just have more common dysmenorrhea. So your life is really impacted with any and all of these mast cell aberrant conditions.

[09:00] 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.

[09:16] Dr. Sue Goldstein: Well, either they're not knowledgeable enough to ask the questions or they're not comfortable enough having the conversation. There's a lot of research that shows that 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 that conversation either because of their own background, their lack of knowledge, their religious upbringing, or just the fact that they have 12 or 15 minutes for the visit.
[09:41] One of the things that we teach at the International Society for the Study of Women's Sexual Health is: start the conversation. If the patient says yes, she has an issue, say, "You know what, Mary, this is such an important conversation. Let's schedule another appointment just to have that conversation." In that moment, she was told this is a safe space to have this discussion, that she is not alone, because clearly he knows what she's talking about, and that either he is going to help her, or his nurse practitioner is going to help her, or he's going to find somebody else to help her.
[10:09] The 3 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 with the internet is that they get a lot of bogus information.

[10:27] Dr. Irwin Goldstein: I want to say something. You're talking about doctor learning. What's amazing about this current era is the podcast, Bendy Bodies, all of these support groups on the various Reddits and Facebooks. The information is happening at a fast pace now. I just had a woman in the office with this neuroproliferative vestibulodynia who had it all her life. And she was informed, oh, go have a glass of wine. Or one doctor actually told her to have more orgasms because that's what would stop her problem. Really ridiculous information. And she got care while she was in her 50s, and basically her whole life she's had this condition.
Whereas now we're getting people who are 18 and 20 years old who are saying on support groups, I can't have sex. What do I need to know? And they're learning about neuroproliferative vestibulodynia at an early age and getting care. My last 4 surgeries were done in individuals who were born after the year 2000. It's pretty amazing.

[11:35] Dr. Sue Goldstein: Just shows how old you and I are getting.

[11:39] Dr. Linda Bluestein: But it's true.

[11:39] Dr. Sue Goldstein: I have a mantra: the educated patient is the empowered patient. And the more education we can get out through sources that are available — last year we published a paper on vestibulodynia and we convinced the editor to allow it to be open access. That means it was available for people to read. 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're seeing clinicians who don't know enough about the disease state to recognize that there's nothing to be seen on exam — and that doesn't mean there's nothing wrong.
[12:18] My husband taught me 40 years ago: listen to a patient long enough and they will tell you what's wrong with them. 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. We want to give patients 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 that.
[12:48] So thank you for doing your podcast so that more people have access to this information.

[12:58] Dr. Irwin Goldstein: And not to keep this going, but the Tarlov cyst thing — I can't tell you how many people are told all Tarlov cysts are incidental. They don't mean anything. They don't do anything. In my experience, if a doctor says, "Mrs. Jones, your Tarlov cyst is incidental," they're going after the wrong thing. I mean, a Tarlov cyst really displaces the sacral nerve root. Give me a break.
[13:23] And there's plenty of evidence for this. The key evidence is getting a lidocaine injection where the Tarlov cyst is to numb it. If your symptoms significantly reduce, what other conclusion can you draw?

[13:39] Dr. Linda Bluestein: And that's exactly what happened to me when I had a selective nerve root block. My pain went away 100%. For the first time in years.

[13:47] Dr. Irwin Goldstein: Amazing. Amazing.

[13:49] Dr. Linda Bluestein: It was amazing. And I had surgery with Dr. Frank Feigenbaum, and that's how I found out about you. I've interviewed him on the podcast, so we have an episode about Tarlov cysts, and we can link that in the show notes as well. I find such a huge number of my patients have Tarlov cysts. And like you said, they're told—

[14:08] Dr. Irwin Goldstein: They're all incidental. They're not.

[14:09] Dr. Linda Bluestein: Exactly.

[14:10] Dr. Irwin Goldstein: It's something else.

[14:12] Dr. Sue Goldstein: Again, it's lack of education on behalf of the provider who's saying that. Unless they have an interest in learning more about the sexual health issues that can occur from it, that information is not going to come to them. They have to seek it to learn it. I always say to our patients: go back to your doctor who didn't know better and tell them about this information, so maybe the next patient won't have to struggle for so long finding help.

[14:33] Dr. Linda Bluestein: Mm-hmm. Yeah, that's an excellent suggestion. And Tarlov cysts can cause so many other symptoms, right? Because like you said, there are sacral nerve roots, which actually supply more than just the perineum.

[14:46] Dr. Irwin Goldstein: Okay, Linda, let's do a pop quiz. Tell me the 3 nerves in the sacral spinal nerve root. Say the word pudendal.

[14:56] Dr. Linda Bluestein: I was just going to say pudendal. That was the one I was going to say.

[14:59] Dr. Irwin Goldstein: Say the word sciatic.

[15:00] Dr. Linda Bluestein: Sciatic. Okay.

[15:01] Dr. Irwin Goldstein: And the third is pelvic.

[15:02] Dr. Linda Bluestein: Okay.

[15:04] Dr. Irwin Goldstein: So pelvic is the inside of the clitoris. It's the bladder. It's the rectum. It's the vagina, the cervix, the uterus. 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.
[15:23] So all of these weird symptoms that confuse people — 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 the perineum, and something related to the pelvic nerve, like your belly button, which is weirdly sensitive. Was yours weirdly sensitive?

[15:50] Dr. Linda Bluestein: I don't remember that actually.

[15:52] 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 Tarlov cyst and the annular tear. Now the weirdest part of having EDS is you can have both an annular tear and ptosis, because they're both connective tissue related. And we have to do a lot more detective work to figure out which is which, which one is causing the pathology. But we do that.

[16:17] Dr. Sue Goldstein: We see patients with itchiness in their crotch and everyone assumes they have a yeast infection and then they give them treatment and it doesn't do anything. Because it's coming from the sacral spinal nerve roots. Or burning when they pee and they assume they have some kind of a urinary tract infection, but there's nothing when you culture them. It's because it's coming from the sacral spinal nerve roots.
[16:36] So things can happen in one part of your body coming from another part of your body. And for people who have spine issues, it can affect anything in your lower body. One of my friends always calls it being a sex detective, because that's what we are. We have to figure out what's happening and then figure out where the problem is, where the pathology is actually occurring. Is it at the location of the problem or someplace further upstream? Makes it a challenge, and it makes it more fun.
[17:04] I'm not a clinician — full disclosure, I'm a clinical researcher and I'm a sexuality educator. But I'm very involved in all of this. 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 know.

[17:22] Dr. Irwin Goldstein: Sue, you think you just do 2 jobs? You do about 85 jobs.

[17:26] Dr. Sue Goldstein: Yeah, well, I'm a jack of all trades.

[17:28] Dr. Irwin Goldstein: You're the president of ISSWSH, surgery scheduler, running all our research. Give me a break.

[17:34] Dr. Sue Goldstein: I say I'm a jack of all trades and master of most out of necessity. But I want to give a shout-out to Claudia in my office, who is my compadre. Between Claudia and myself, we sort of make sure everything has happened. We train all of our new staff, except for our nurse practitioners, of course — they're trained under Irwin. 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 administrator, our HR officer, my co-researcher, and she, like me, does a little bit of everything. I know this is not a promotion for San Diego Sexual Medicine, but I love Claudia, so I'm going to do it. Just using this platform to say thank you.

[18:10] Dr. Linda Bluestein: One of the things that was explained to me by one of my GYNs fairly early on was that basically from the waist to maybe the mid-thigh is a little bit of a black box for most physicians, even if you are a urologist, 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 the functioning of the musculature and a lot of the other problems that can happen in that area, it seems like there are a lot of people who really struggle to get answers.
[18:42] And of course, the ideal thing is if they can get help from somebody who is a sex detective — they can go to the ISSWSH website to find someone like that. 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, because I feel like there is some low-hanging fruit that can be tried for some of these problems. So could either of you give us some suggestions for things that are pretty easy for people to try that might be helpful?

[19:20] Dr. Irwin Goldstein: Ouch. Sue, you start.

[19:22] Dr. Sue Goldstein: One of the things is to have their gynecologist check their hormone values, because a lot of young women who've been on oral contraceptives have very low testosterone, which 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 — a primary care doctor or gynecologist can order some hormone levels and see if they're normal.
[19:45] Normal for premenopausal women is pretty easy to adjust. The problem is with postmenopausal women, where the "normal" established by labs was really the average of menopausal women who have sexual problems. Dr. Goldstein and Dr. Gay did a study years ago in women who actually were normal and had never taken any hormones to get real normal values. We look at the upper tertile of that range of normal from the lab. So those are things you should be able to do with your doctor. And if he or she has trouble interpreting the labs, you can look at your own labs, look at the reference range from your lab, and see if you're in the upper tertile.
[20:25] The other thing you can do to see if your pain may be from neuroproliferative vestibulodynia: is your belly button sensitive? That's a key. And the other thing is the Q-tip test. You take a Q-tip and just run it very softly on your vestibule. If you have pain because of your hormones, you're just going to feel it. But if you have neuroproliferative vestibulodynia, you're going to have intense pain just from that very soft rub. Those are sort of keys, or cues, to what's going on. Irwin, what are your thoughts?

[21:00] Dr. Irwin Goldstein: Sue just spoke of a thing called allodynia. Remember we talked about nosodynia and shinodynia — allodynia means pain from something that is not normally painful. So take the back of your hand and tickle it. It doesn't hurt, right? That's because if you have the correct density of nerve endings called nociceptors in the skin, when you tickle, you get a tickle response.
[21:32] The problem in women who have this form of vestibulodynia — too many mast cells and too many nerves, which is common in EDS patients — is 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 allodynic response. That's not a good sign. It's a positive allodynia test.
[22:06] I think what I would say — being the biology-oriented person — is: first, get sex therapy involved, get a psychologist involved. You need help. This is annoying and disturbing and unrelenting and unremitting. It's just frustrating. So get someone you can speak with who is positive and going to work with you towards relationship help and provider help. The next thing—

[22:42] Dr. Sue Goldstein: I'm going to stop you there for a second. He's not saying go to a therapist instead of a physician. He's saying go to a therapist and a physician — you need to have the medical problems treated, but the medical problems cause so many other issues, relationship issues, psychological issues, that you need the therapist at the same time or after the treatment has been finished. I just wanted to make sure people understood you weren't saying, have a glass of wine and go to therapy. Saying get treatment and go to therapy. Sorry.

[23:07] Dr. Linda Bluestein: Yeah.

[23:10] Dr. Irwin Goldstein: Linda, pop quiz. What does Sue say? What type of therapy do we do in sexual medicine?

[23:18] Dr. Linda Bluestein: Bio, psycho, social. Yep.

[23:20] Dr. Irwin Goldstein: Good job.

[23:21] Dr. Linda Bluestein: That's so important. In your office, that is how you do the evaluation. You see a pelvic floor physical therapist, you see a psychologist, and then you see Dr. Goldstein — at least that's 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. I think that's a fantastic approach. And just a little 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 some apps that — of course one-on-one is always better — but 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.

[24:15] Dr. Irwin Goldstein: Therapists no longer do just in-person. It's all Zoom. So you can telemedicine from wherever you are.

[24:20] Dr. Linda Bluestein: Yeah, that's still one-on-one.

[24:24] Dr. Sue Goldstein: They just have to have a license.

[24:24] Dr. Irwin Goldstein: Oh, I thought you meant something different.

[24:26] Dr. Sue Goldstein: No, no, she meant an in-person visit. But AASECT-certified sex therapists exist around the world — obviously not in every country, but even though it's an American organization, they have lists of providers around the world and there are many AASECT-certified therapists in other parts of the world. So that is a wonderful resource. Go on the AASECT site and they have a "find a provider" section. I can't tell you off the top of my head exactly where it is on that site, but you'll see it and you can look for a provider that can help you.
[25:01] And the same thing with physical therapy — if you're going to physical therapy, you want to 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. You can go to the APTA, the American Physical Therapy Association. They should have a section under women's physical therapy — I believe that's where you would find the pelvic floor physical therapy listing.
[25:39] So take advantage of the internet and find people. And we recognize that not everybody who's certified means that they know what they're doing. 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. But there are resources that will show you providers beyond just your local community. So take advantage and find somebody that would be helpful.

[26:06] Dr. Irwin Goldstein: Let me continue. You need the biopsychosocial, so you need the therapist, but you need the biology too. In the history of us in sexual medicine being involved in EDS, Tarlov cyst work, and annular tear work, we had no idea that any of this could be related to sexuality. But we did know if you had pain, you could take a medicine that addressed the pain. You could do gabapentin, pregabalin, amitriptyline — there's a laundry list of these things. You could do SSRIs, Cymbalta, and they're very helpful.
[26:52] And in conjunction with getting pharmaceutical 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 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.
[27:17] So that's the trick, I would say. Find someone to help you with the symptoms — a pain medicine doctor in particular, maybe pudendal nerve blocks, maybe whatever. But don't give up on the detective part, because that's the way to the cure.

[27:32] Dr. Linda Bluestein: Yeah, absolutely. If you don't address the root cause, then the problem is going to continue for sure. And that's where it drives me crazy that so often radiologists will comment on a Tarlov cyst in their findings but won't say how big it is, and 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 in this population. And there are even simple things — or I shouldn't say simple, but one of the questions I got was, what about tearing of the tissues down there? Because people have more fragile tissues if they have Ehlers-Danlos. Even something like that — it could be hormone-related, or it could be due to menopause, which is obviously a major hormone shift in life. But are there simple things that can be done for that?

[28:26] Dr. Irwin Goldstein: Yes. Estrogen and testosterone creams can be done. They're compounded, so you need a provider for that. I was going to say something. Yeah. Lichen sclerosus. I don't know the exact association, but yes, skin conditions are more common in individuals with EDS. And some of the skin conditions we see are lichen sclerosus, which makes the tissue less stretchy and more likely to have fissures. They're typically at the 6 o'clock region of the posterior fourchette, and during sex they tear and they really hurt.

[28:56] Dr. Linda Bluestein: And in terms of testosterone therapy and/or estrogen therapy, there are different modes of administration, right? There's topical, and then you can also do testosterone injections or other methods. I'm sure the contraindications are different depending on how it's being administered. Are you able to share some of those contraindications with us?

[29:21] Dr. Irwin Goldstein: You want to do it? You were on the committee.

[29:24] Dr. Sue Goldstein: Yeah, so are you. The thing is, hormones are both systemic and local. Hormones that you apply to the vestibule — it's compounded testosterone and estradiol. It's such a low, low amount of testosterone and estradiol that I don't believe there are any contraindications to that.
Inside the vagina, we prefer to use dehydroepiandrosterone, which is actually higher up in the cascade and becomes testosterone and breaks down to estradiol. What's cool about it is it's intracellular, so it doesn't actually leak into the bloodstream. You don't get systemic hormones. It was developed by someone whose daughter unfortunately died in her 30s of breast cancer. While she was still alive, he was trying to give her quality of life. He knew she couldn't have certain hormones because of the breast cancer, and so he developed this whole concept of an intracellular mechanism. He published more than 1,200 papers up in Canada. Brilliant man. He passed away a couple of years ago.
[30:31] So that's what we like to do. Although you can also put estradiol into the vagina if you're not able to get the DHEA. That's separate from having systemic — meaning going into your whole body.
[30:42] Testosterone can be delivered by injection, but it's really difficult for women because it's such a small volume. We typically use the gel that's approved for men, and we use approximately a tenth of a man's dose, somewhere between a tenth and a fourteenth, adjusted based on where your levels are. We believe in monitored hormone therapy, so at 6 weeks or at 3 months, we would redo blood tests to make sure they stay in the safe region.
[31:15] What can testosterone do to you? Testosterone can turn you into a man — that's what transgender women who want to become men do. But we're not giving you anywhere near that dose. People always say, well, I'm going to have a low voice. I was a first soprano when I started on testosterone 23 years ago, and I am still a first soprano. In fact, I used to only get up to a high G. I can get to a high A now.

[31:38] Dr. Irwin Goldstein: Hey Sue, who was your doctor who gave you the testosterone?

[31:40] Dr. Sue Goldstein: Oh, was that you?

[31:40] Dr. Irwin Goldstein: Oh, yes.

[31:40] Dr. Sue Goldstein: You also get hair growth. But menopausal women get hair growth too, so you might get a few hairs on your chin. You pull them out, you do electrolysis, whatever you want. To me, the positive of having testosterone — the benefits are far greater than any of the negative issues. Most of the things you hear about causing problems with testosterone is when you're getting a super-physiologic level, too much testosterone into your system.
[32:08] When we are premenopausal — before you were on an oral contraceptive — we have a certain amount of testosterone in our bodies. All we're trying to do is resupply some of that. Now, here's something that may surprise you. If you ask a gynecologist how much estradiol versus testosterone you have in your body, they'll say, oh, you have far more estradiol. But is that true? Do you have more estradiol or more testosterone in a premenopausal woman?

[32:33] Dr. Linda Bluestein: I'm guessing that's not true, because otherwise I don't think it escalates.

[32:37] Dr. Sue Goldstein: They look at graphs and say, okay, you have this much estradiol and only this much testosterone. They don't look at the fact that the actual units are different. Women have 5 times the amount of testosterone in their body than estradiol. So to replace estradiol in menopausal women and say, well, you don't need testosterone because there's so little, is bogus.
[33:02] I just had my DEXA scan a couple of weeks ago. I'm a 75-year-old woman — I'm not embarrassed to say my age. My DEXA should really show bone loss on my hips and my spine. I gained 4.6% on my hips. I do not take Fosamax or any of the other medications. I eat very little cheese, I don't drink milk, so I'm not getting a lot of calcium. It's because I take testosterone and I exercise. The testosterone gives me the muscle strength and the energy to exercise. And exercise and testosterone both help maintain my bone mass and can actually improve it. So 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 the other hormones that I'm on. I'm sorry, I went far afield.

[33:55] Dr. Linda Bluestein: No, no, that's okay. And I did want to follow up with two questions. One is you were talking about monitored hormone replacement therapy — so important. There are a lot of people doing things like pellets, and once you put that in, you can't control the dose until you do the next pellet. What are your thoughts about that?

[34:18] Dr. Irwin Goldstein: We don't do pellets. For people who do pellets, I think there are other ulterior motives in place. The issue is you should do something that you can stop at any time if there's a reason, and you can't do that with pellets. So I think it's just unfair to the person.
[34:39] Now, having said that, there are a group of people who love pellets and think it's a fabulous treatment, but it's just a little bit unsafe. The ideal way is to take it daily, like everybody else takes their pills daily. You could take this daily and you can monitor the dose with blood levels.
[35:01] There's a second monitoring system. We do a thing called vulvoscopy, which is basically an intense camera placed between the legs and looking at the vulva. The patient gets to see what we are seeing, which is an amazing experience, because people have almost never seen the inside to their vagina or whatever.

[35:27] Dr. Sue Goldstein: Or the outside.

[35:27] Dr. Irwin Goldstein: Or even the outside.

[35:29] Dr. Sue Goldstein: Most women don't look down to see what they look like. They don't even know their body parts. They tell you it hurts "down there."

[35:34] Dr. Irwin Goldstein: When you do vulvoscopy prospectively on people who start off with menopause and then go into issues — now 1 year on treatment and 2 years on treatment — you see the tissues turn pink and healthy and lubricated. It's such a pleasant thing to watch the longitudinal improvement. So the monitoring is both visual and hormonal blood test based.

[35:57] Dr. Sue Goldstein: For people who want to learn more about testosterone in women, ISSWSH did develop a process of care — basically how to prescribe, how to use testosterone in women.
[36:07] One of the things the FDA says: if you put testosterone into a 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 big tube from a compound pharmacy, the amount of testosterone on the top is different than the amount on the bottom. That's why the FDA says don't do that. That's why we choose to use an FDA-approved product. And the pellets, unless you're using the one FDA-approved product for men, none of those are FDA-approved, which means the guidelines they have to follow are far different from FDA-approved products.
[36:42] So take a look at the ISSWSH paper on testosterone. It'll tell you all the pros and cons, all the rationale, the physiology, the safety issues. It's all there to be read.

[36:55] Dr. Irwin Goldstein: And another thing — go ISSWSH. Everybody should read, learn, know about ISSWSH and become members. Linda, you should become a member there. Oh my God.

[37:02] Dr. Linda Bluestein: I'm doing a presentation at the ISSWSH conference next month.

[37:05] Dr. Irwin Goldstein: Oh my God.

[37:06] Dr. Linda Bluestein: Yeah.

[37:07] Dr. Irwin Goldstein: You big time.

[37:09] Dr. Linda Bluestein: I was invited to give a presentation, so I'll be talking about—

[37:13] Dr. Irwin Goldstein: So cool—

[37:14] Dr. Linda Bluestein: sex problems in this population with a pelvic floor physical therapist, a friend of mine. So we were together doing a presentation.

[37:21] Dr. Irwin Goldstein: Pop quiz, one more pop quiz. When did this start? What year is this? This is our 25th anniversary. Year 2000 it started. Amazing.

[37:31] Dr. Linda Bluestein: 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.

[38:38] Dr. Linda Bluestein: 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, which is so important for relationships. And as we talked about, there can also be problems with sitting and wearing tighter clothing or other aspects of life. But let's talk about libido and how you have seen these conditions impact people and their libido and what can be done about that.

[39:06] 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 Sue has had this libido problem. In the medicine, we call it HSDD, hypoactive sexual desire disorder. And I think it's very cool that both are — 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.

[39:39] Dr. Sue Goldstein: So HSDD — it's very interesting because a lot of women don't recognize that they've lost their libido, that their desire is down. 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. But a lot of times it'll be: okay, you had sex yesterday, how was it? Oh, it was good. Well, do you want to have sex tomorrow? Who cares? There are a lot of different responses.
[40:13] Lillian Arlequieu and I co-authored a book many years ago, When Sex Isn't Good, and I'm not giving a plug to the book, except that we went out and we interviewed women with different sexual problems. And I think one of the most telling was the interviews with the women with low desire. One woman said — I said, I dressed beige, I acted like a wallflower, 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. I always remembered that.
[40:45] For me personally, I literally wasn't having sex very often, and it wasn't all that great. And I thought, oh, my husband has ED. How am I going to tell this world-famous ED doctor he has ED? But there was nothing wrong with him. Literally, he came home from the office with the Female Sexual Function Index, which was a brand new questionnaire developed to figure out if a medication was effectively treating people in clinical trial conditions. I took it and he said, holy shit, you've got HSDD. It didn't dawn on me. As engrossed as I was in the field, it didn't dawn on me that it was me, because we really didn't know a lot about it.
[41:28] For me personally, at the time, the only really good treatment was testosterone. And I was on testosterone for years. The way I put it is, when I was 25 and sex was great, now I was in my 50s. Instead of sex being a 10 out of 10, it was more like a 2 or 3 out of 10. But that was fine because that was better than a 0 out of 10. And sex — sometimes I was interested and sometimes it was duty sex.
[41:59] And then one day the testosterone stopped helping me, and I turned to my husband and 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 recognized it. At the beginning, I didn't recognize it, which is what happens to most people. I knew. I said, fix me.
[42:12] Well, ironically, it was just about the time that flibanserin — trade name Addyi — was approved. I had to wait about 3 months for it to be available, and then that October I got my first pill. Today we have a second treatment as well called bremelanotide, trade name Vyleesi. So we have 2 options out there for women in addition to testosterone.
[42:30] 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 — they work in the brain. I tell people they reboot your brain. Somebody said, well, am I going to become a nymphomaniac? I say, well, were you a nymphomaniac when you were 18 and healthy? No. Well, it's going to bring you back.
[42:57] So now my sex is a 8, 9, and 10 out of 10 much of the time. I'm a normal person. There are days I'm exhausted and sex is not great. There are days that I have too much on my mind because something happened at the office and it's hard for me to stay focused on the actual sexual activity. We all have those things happen. People without any kind of issue have those things happen. But I am my normal self.
[43:25] And when I say that — I recognize there 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, your brain has to work and the rest of your body too. So if you have issues with your body functioning, if your brain isn't there, if you're not in the game, if you're lying there thinking about putting the wash in the dryer before it gets moldy or forgetting to buy milk for the kids' school tomorrow — if that's all you can think about, it doesn't matter how well your body is working. You're not going to enjoy sexual activity.
[44:15] So I'm very happy that I live in a time and a generation where I have access to pharmacotherapy. We did a brief clinical trial in our office where we compared women being on this medication to women who were on the medication plus having sex therapy with our sex therapist. Both groups showed improvement — the majority of people showed improvement. About 70% 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 said at the beginning of the conversation, having both sex therapy and pharmacologic therapy is very helpful. You can choose to have one, you can choose the other, or you can choose to have both.
[44:58] For me, I chose to do the pharmacotherapy and it worked. And I'm 75 and I've been married more than 50 years and I have great sex. I tell people my husband has to practice what he preaches.
[45:10] But what I'm saying is your sexual function — particularly libido, being in your brain — affects so much more than just being able to have an orgasm or to become aroused. It affects your relationship. It affects how you think about yourself.
[45:31] And going back to the book I mentioned earlier: 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.

Dr. Linda Bluestein: Mm-hmm.

[45:42] Dr. Sue Goldstein: And I'm not in any way, shape, or form saying that sexual problems are the same as having cancer. They're not. But the descriptors — she didn't feel like a woman, she didn't feel whole. That's what women who are survivors will say. And to have such a powerful message from women who were in their 20s and 30s and in relationships. One woman said to her husband, I'm just not interested. Go have sex with somebody else. Just be safe. Come home to me.
[46:15] Literally said this, because they had a strong enough relationship. But if you have bad enough HSDD, it gets to the point that you develop 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. This is how relationships can get destroyed.
[46:34] 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. 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 who is going to help you. Go on the ISSWSH website if you identify as a woman and find someone that can help you. Because there are people out there.

[47:04] Dr. Irwin Goldstein: Let me bring this back to Linda and do another pop quiz. What are the 4 things that typically explain low interest? Sue mentioned neurotransmitter imbalance — flibanserin lowers the high serotonin, Vyleesi raises dopamine. That's the neurotransmitter issue. She mentioned the psychologist. She mentioned she's on testosterone, which is the hormonal piece. What is the fourth factor, Linda? Pop quiz.

[47:41] Dr. Linda Bluestein: I don't know. I have no idea.

[47:43] Dr. Irwin Goldstein: Well, you had a Tarlov cyst — so neurologic issues.
[47:47] If the mass effect of the Tarlov cyst or the dural inflammation from an annular tear injures the nerve roots so they're hypo-functioning — not sending a lot of information — so you're touching your genitals but not getting a lot of information flowing to the appropriate brain centers, then you're going to have low libido. If you don't feel, you're not going to have that much interest.
[48:14] So we see a lot of women with low interest who have EDS, who have Tarlov cysts or annular tears. After we do the injection that you had — that focal injection in the back — they get their sensation back. Really cool.

[48:34] Dr. Linda Bluestein: And if somebody has PGAD, or persistent genital arousal disorder, is that almost the opposite, or not really?

[48:41] Dr. Irwin Goldstein: It's not almost the opposite, it is the opposite. Instead of the annular tear or Tarlov cyst irritating the nerve root and causing it to be hypo-functioning — that's the low libido, low sensation — if it's hyper-functioning, then they're getting unwanted, unrelenting information into the region called the paracentral lobule, which is where all the sensation for the genitals and the lower extremities exists.

[49:07] Dr. Linda Bluestein: Some other questions that people posed: one of them was how to address sexual dysfunction and lack of 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?

[49:22] Dr. Irwin Goldstein: Whoa, that's very specific. I would have to speak to that person. We do courtesy calls, so it's my opportunity to give back. I view it as my opportunity to teach people who can't afford it or who live somewhere else. 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. Someone with dysautonomia and beta blockers — it's a little more specific and I would need to get more information, but we can help virtually almost anybody with logical and rational strategies. That's biopsychosocial.

[49:36] Dr. Linda Bluestein: Right.

[50:11] Dr. Sue Goldstein: We're not going to promise anyone that you're going to be 100% who you were before the problems. We can't necessarily cure somebody, but we can treat somebody so they can live. If you have PGAD that's a 9 out of 10, and we can get it down to a 2 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 the door is going to leave 100% who they were before they had their problem. But we don't give up on patients. We will continue to work.
[50:38] What we know today is so much more than what we knew 2 years ago, which was so much more than what we knew 2 years before that. And I think that's the most exciting thing — call a patient back, say, you know what, 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. Because we are human beings, and as human beings, we are learners. We can learn new things and then teach new things and then help more people.

[51:04] Dr. Irwin Goldstein: I have a cool story. So it's the year 2001. There is a psychologist at Rutgers, Sandra Leiblum. She actually was the first president of ISSWSH. And she reported on a condition called PSS, 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 there is no sexuality going on in PGAD.
So she was the psychologist and I was the biologist. I got all of her PSS/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 believed that PGAD was too much excitation and too little inhibition. So we developed strategies to lower the excitation and to increase the inhibition.
[52:12] A drug, tramadol, is an opioid, and that increases inhibition because opioids inhibit. So we were giving a lot of these PGAD patients tramadol.
[52:22] And then it's 2012 — that's basically 11 years later — and I get a paper submitted to a journal I edit. Dr. Barry Komisaruk, who happens to also be at Rutgers, submitted a paper in which, in a support group population of PGAD patients, he asked them to get pelvic MRIs. And he said, oh my God, there's like 10 times the number of Tarlov cysts in the PGAD community compared to others.
I picked up the phone and said, Barry, if we publish this paper, it's good science, but you're going to force everyone with PGAD to get a pelvic MRI. And he said, well, it's good science. You have to publish this paper.
[52:56] And then we started doing pelvic MRIs and we were seeing not so many Tarlov cysts, but way more annular tears in the lower part of the pelvis. So we flipped them into lumbar MRIs. Where I'm going is it's just a continuous learning. Everybody participates at some level, including especially the patients. We are doing things today that I wasn't even doing 6 months ago, to be quite honest.

[53:26] Dr. Sue Goldstein: Which is why he'll never retire, because he keeps doing new things.

[53:31] Dr. Linda Bluestein: I'm glad to hear you say that, because in my practice, it's the exact same way. I have a small private practice, and I do things now that I didn't do 6 months ago, because like you said, we're continuously learning. That's really exciting.
[53:44] 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?

[53:50] Dr. Sue Goldstein: Persistent genital arousal — as in the fleeting experience — is great. Persistent genital arousal disorder is the point where you can't concentrate on anything because you're constantly — imagine being a second-grade teacher and your clitoris feels like it's constantly aroused with all those 7 and 8-year-old kids 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.
[54:09] You know, this is not something that people can talk about, but their lives are hell. They get in a car and the vibration starts the arousal sensations. And arousal isn't necessarily the clitoris feeling aroused — it can be any of the other dysesthesias: the burning, the cutting, feeling like razor blades, all of these different sensations. And it occurs in all genders. It's not just in women.
[54:31] These are the people who have difficulty with jobs, difficulty working, difficulty with family, 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? There was a gentleman who had to masturbate to ejaculation 7 or 8 times before he could leave his house, because otherwise he would get a spontaneous erection and ejaculate in his pants, which is so much more obvious.
[55:07] But it's such a difficult problem. And when you examine them, they usually don't actually have a clitoris that's engorged. It's the sensation in their brain. They're getting the mixed messages because of the Tarlov cyst or the annular tear. But it's not something that you can learn to live with when it's persistent genital arousal disorder.
[55:32] 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. When it's full disorder, it's awful.

[55:41] Dr. Irwin Goldstein: I call PGAD the monster. And of all the conditions — I hate to say this — of all the conditions I've seen in all the years I've been doing this, many decades, that's the one associated with the most suicidality. I have, sadly, a whole bunch of individuals who are not with us today because they could get no relief from their PGAD.

[56:05] Dr. Linda Bluestein: Oh, that's terrible. And in terms of what options there are — besides determining if you have a Tarlov cyst and potentially whether you're a candidate for surgery on it — what, if anything else, can be done if you have PGAD?

[56:14] Dr. Irwin Goldstein: The original biologic strategy was to make inhibition higher in the brain.

[56:27] Dr. Linda Bluestein: Using the tramadol.

[56:27] Dr. Irwin Goldstein: The tramadol or amitriptyline or all the other things. Anti-epileptics — epilepsy is like a focal seizure. So neuroleptics, things that stop or impede neurologic transmission. Neuroleptics are the key. And SSRIs play a big role.

[56:49] Dr. Sue Goldstein: But those are band-aids.

[56:50] Dr. Irwin Goldstein: They're band-aids for sure. But at least — I have a woman who came to us in 2007. She saw an article in the local newspaper about sexual medicine and came in. So it's 17 years later, it's 2024. She's still on tramadol as her primary therapy. It's worked fabulously for her. She's had a normal life. She has an annular tear, she doesn't want to deal with it, but God bless, that's her call.

[56:51] Dr. Sue Goldstein: ISSWSH published a paper on PGAD and they really changed the way we look at management of all sexual health issues, dividing the body into 5 regions. So 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 1, 2, 3, 4, or 5, and then go after that. When you're talking about annular tears and sacral Tarlov cysts, we're talking about a region 3 disorder. But you could have pudendal neuropathy that's causing it.
[57:54] We have a patient who comes in once a year for a pudendal nerve block, and her PGAD is totally in control. When she started, she had to do it every 3 months, then every 6 months, and now it's literally once a year.

[58:03] Dr. Irwin Goldstein: Pop quiz to Linda. What is the most common reason for having a region 2 pathology causing PGAD?

[58:13] Dr. Linda Bluestein: I don't even know what region 2 is.

[58:14] Dr. Irwin Goldstein: It's your pelvis, perineum, your crotch area, basically.

[58:17] Dr. Sue Goldstein: So if you need a pelvic nerve block to get better, he's saying: what caused the problem there? What's the most common reason?

[58:24] Dr. Linda Bluestein: I don't know.

[58:25] Dr. Irwin Goldstein: Bike riding. She was a spin bike rider. She did an hour of spinning, and sometimes she did an extra hour because the instructor needed people there. Every day the impact to her crotch area developed into an injury to the pudendal nerve that sent too much message to the brain, and that was her PGAD.

[58:46] Dr. Sue Goldstein: But we also talked about people with vestibulodynia, which is a mast cell disease. Sometimes instead of vestibulodynia causing pain as is normal, it causes PGAD sensation. So they have a vestibulitis, and treating that treats the PGAD. You need to figure out what the trigger or triggers are — because often there's more than one — and then treat that.
[59:05] The other thing is that stress will always increase those triggers. So no matter what the physical trigger is for PGAD, it is so important to have therapy, stress therapy, and to learn how to deal with the stress in your life. Because no matter what it is, whenever stress occurs, it's going to trigger the PGAD symptoms in and of itself. Having a multidisciplinary approach is so important. Typically with PGAD, it's not just one thing. And that's huge for your EDS patients who have issues. The stress is important, and examining the full person and caring for the full person is so important.

[59:38] Dr. Linda Bluestein: And that's an important point about stress, because any of the mast cell conditions — interstitial cystitis also can be a mast cell condition — if you have any painful condition, stress is going to exacerbate it. I remember one of my doctors, many years ago, and 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." Your Tarlov cyst was incidental.

[59:42] Dr. Sue Goldstein: Right.

[1:00:16] Dr. Irwin Goldstein: That was a joke. I'm sorry.
So I want to spend 2 minutes on IC because I have a personal research effort on it. Interstitial cystitis is a real phenomenon, but it has to have on cystoscopy this ulcer at the dome of the bladder called a Hunner's ulcer. And Hunner's ulcers are pretty rare. A lot of women are given an IC diagnosis who don't have Hunner's ulcers. And I'm going to say to you and to them and to everybody on this planet: they don't really have IC.
[1:00:50] They get their bladders stimulated with every drug on earth — lidocaine and various other things. They get nerve stimulation of the nerve in their ankle because that supposedly helps IC, but it doesn't. And they just go on and on with IC treatments.
[1:01:10] What is totally amazing is the vast majority of those people have the neuroproliferative form of vestibulodynia, and that's the true basis for their condition. And it's basically a referral system. So when we numb the vestibule — the same way you numbed your Tarlov cyst — we have the ability to numb the vestibule. And then we have the women with IC urinate during the time their vestibule is numbed. And they say, oh my gosh, I don't have the urges. They don't have the frequency. And when the numbing wears off, they go back to having it. The IC symptoms go away when we do the treatment for neuroproliferative vestibulodynia.
[1:01:51] There is a substantial number of people diagnosed with IC who don't have IC, who really have other explanations. The pelvic floor, for example. The "outside the bladder" concept of IC is really strong.

[1:02:07] Dr. Sue Goldstein: And we've published on the relationship between vestibulodynia and what people have been diagnosed as IC. So one of the cues is: if you keep being given different treatments for your IC and it's not working, it's because you don't have IC. I imagine that most of those treatments probably work if you actually have Hunner's ulcers and have true IC.
[1:02:28] It's like the PGAD situation. We had a woman who came in and wanted her clitoris removed because her arousal was so painful. But she had no physical arousal in her clitoris. The pain she was feeling is in her brain. So when you talked before about someone saying it's in your head — we differentiate between "it's in your head" meaning psychological, versus "in brain," which means you have structures and chemicals in this area. You may sense 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 it's your brain that processes it.

[1:03:09] Dr. Irwin Goldstein: I want to say one thing about the woman who wished to have her clitoris removed. Luckily, she didn't. But there is another woman who did find a doctor to remove the clitoris. And just as you have phantom limb pain when you remove a leg, she now has phantom clitoral pain, because the original pain was never physically coming from the clitoris. She had a Tarlov cyst, and that was the true basis for her clitoral pain.

[1:03:40] Dr. Linda Bluestein: Wow, that's horrible. For people who aren't familiar with phantom limb pain — I actually had a patient not long ago who had CRPS and had an amputation. She made the decision completely independent of me, and I was really concerned: is this actually going to help? She had very severe CRPS, or complex regional pain syndrome. But yes, after people have an amputation, they can feel a painful limb that's no longer there. So how do you treat that limb that's no longer there?
[1:04:09] And Sue, I really appreciate you explaining the difference between "in the brain" versus "in the head," because of course that is where we sense everything anyway. We sense everything in our brain. So saying "that pain is in your head" — well, yeah, that's where you're feeling it, but that doesn't mean there isn't something physiologically going on.

[1:04:31] Dr. Irwin Goldstein: Getting back to the biopsychosocial model, the other thing we haven't talked about with POTS, EDS, and IC is the allergies. There's an awful lot of allergic responses — to medicines, to foods, to pollens in the air. Probably the fires in Los Angeles are bringing all types of other allergies into play.

[1:04:57] Dr. Sue Goldstein: But that doesn't mean everybody who has allergies has any kind of mast cell disease. I mean, I have pollen allergies and I don't have any other mast cell aberrant activity. I don't want people thinking, well, I sneeze from ragweed, so therefore I must have EDS. It's a constellation of symptoms. And I'm sorry I cut you off, but I always worry about people hearing about one thing and saying, oh my God, I must have all these other things.

[1:05:20] Dr. Linda Bluestein: Right.

[1:05:21] Dr. Irwin Goldstein: Well, there are even other mast cell-related conditions that we haven't talked about, like Raynaud's. That's another common issue. You won't see this in San Diego, but in Boston or Colorado, the tips of the fingers become white and purple and it's very painful. It's vasospasm based on cold. And that's also highly related to aberrant mast cell condition syndromes.

[1:05:42] Dr. Linda Bluestein: And when you were mentioning some of the different allergies, I think an important one that I discovered for myself was soap. Especially, you know, we wash all parts of our body, and some parts — like the perineum, our private area — if we're not using a soap that is very, very gentle and fragrance-free, for a lot of people that can cause a lot of problems. And that's a simple change that people can make.

[1:06:13] Dr. Sue Goldstein: Or the detergent you wash your clothes in, or the toilet paper you use, or the sheets you sleep on.

[1:06:18] Dr. Irwin Goldstein: We had a woman — she was at home and she was fine. She went into a hotel that used a different toilet paper, and she got severe pain during intercourse as a result.

[1:06:34] Dr. Sue Goldstein: But you have to have that predisposition. 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. That's something for the future. We work closely with an allergist here in San Diego who's very interested in mast cell. There are people around the country with an interest in mast cell or in specific things like EDS or vestibulodynia.
[1:07:04] But we just don't know enough about these diseases yet, though we're constantly learning. 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 more thorough questioning about all of the comorbidities, probably every one of them had at least one. But as I say, it doesn't mean everyone's going to have things. You have to go through life thinking, I could react to something, I need to think twice.
[1:07:36] We had a woman who put hair dye on her pubic hair. Not a very smart thing to do. So be sensible and live your life in moderation and hopefully everything will be okay.

[1:07:47] Dr. Linda Bluestein: And it's surprising sometimes the changes that you can see. I treat a lot of people with mast cell activation syndrome, because I treat a lot of people with EDS or HSD or hypermobility spectrum disorders. And when you stabilize the mast cell activation syndrome, often what was labeled as interstitial cystitis — or bladder pain, which is probably more accurate in most of those instances — oftentimes they report those symptoms get dramatically improved.

[1:08:22] Dr. Irwin Goldstein: Better. Yeah, very cool.

[1:08:26] Dr. Linda Bluestein: Well, we're probably getting pretty close to the end of our time here.

[1:08:29] Dr. Irwin Goldstein: Did you have any other pearl questions from the individuals?

[1:08:34] Dr. Linda Bluestein: We did have another question. 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.

[1:08:49] Dr. Sue Goldstein: Wow, that's a great question. That's a good question for a therapist.

[1:08:57] Dr. Irwin Goldstein: I think you don't have to have traditional penile-vaginal sexuality. You can have all types of other sexual activity that ends in orgasm without the need for penetration.

[1:09:12] Dr. Sue Goldstein: But you still have to have the conversation about why you're not having vaginal activity. I think you can say, I really care about you and I want to be honest with you and I have these issues and I'm working on it. And hopefully at some point I will no longer have pain with penetration. I'm being honest because I'm hoping this relationship will last.
We see partners — I remember a husband who 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. You would think that now that she's better, he would say, okay, now we can have a more normal life. But I think being honest is so important, because we see too many people who don't want to get to that conversation. So they break off the relationship before they get to the intimacy portion. And then eventually they wind up not even going out at all, not even going out with friends, because they talk about their dating history, and they wind up staying home and, you know, being isolated. And that's no way to live.
[1:10:21] So if you're in a relationship with somebody that you really think might be long-term, I think you open with: I want to be honest, and this is what's going on. And I hope that you'll help me through this. I don't expect that I will be like this forever, because I'm seeking treatment. But I just want you to know now, and this is why — can we think about alternative forms of intimacy for the moment?

[1:10:45] Dr. Irwin Goldstein: I had a woman who had horrible dyspareunia, or painful penetration, and they wanted a family. They couldn't have a family through penile-vaginal intercourse, but they did intrauterine insemination. 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 — at least from her point of view. So there are ways. Being honest and finding the sex detective sort of person who is familiar with many alternatives — you can get help.

[1:11:34] Dr. Sue Goldstein: And a partner who's supportive.

[1:11:36] Dr. Linda Bluestein: Yeah. And I do want to just say — it was mentioned a couple of times and I just want people to know — what a vestibulectomy is, because that's an extreme treatment that of course most people don't end up having. If you wouldn't mind just very quickly before we wrap up explaining what that is and why you might do it.

[1:12:01] 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 a lot of tissue. The good news is if it's infiltrated with nerves and mast cells — which is the similar thing to EDS and endometriosis and IC and all these other conditions, it's an infiltrative mast cell problem — you can remove the tissue, because there's no excess infiltration in the vaginal canal and no excess infiltration in the vulva. So you have this cool opportunity to rid the body of the million or so nociceptors that cause burning when you tickle.
[1:12:42] While it's an extreme therapy, the fact is there's no medical therapy for dealing with too many nerves and mast cells in a tissue. It's infiltrated. You either deal with it with alternative sexual activities, or you deal with it by removing it.

[1:12:57] Dr. Sue Goldstein: In 2025, surgery is the only treatment for neuroproliferative vestibulodynia — the excess nerves and mast cells. But it's only for that. We would not use vestibulectomy for any other disease state, at least that we're aware of at this time. So it's wonderful to have a treatment. And obviously they have to heal postoperatively, but after healing, even the gynecologist can't tell they've had this done, because the tissue is so small. And once the pain is gone, you live the rest of your life perfectly normal. You can deliver children, all of this. So there's no downside other than having surgery and recovering from surgery.

[1:13:37] Dr. Linda Bluestein: And that's a subset of people who have vestibulodynia or pain in the vestibule. This is a subset of those people who have the nerve issue.

[1:13:38] Dr. Irwin Goldstein: There are 30 different reasons for vestibulodynia. This is one of them. But it's highly associated with POTS and EDS and endometriosis and allergies and Raynaud's and skin conditions and asthma and sleep disorders, and you can go on and on.

[1:14:03] Dr. Sue Goldstein: We see it a lot in our practice because gynecologists are generally only really comfortable taking out little pieces of the vestibule. There are only a few people in the United States who are really comfortable doing a complete vestibulectomy with vaginal advancement flap. So we have a lot of patients who come from all over.
[1:14:20] That's why it's something we see a lot of — because if you have hormonal issues, it's more likely that your local doctor can help you. If you have spine issues, you'll often come to us because most people don't understand that as well. We're a tertiary referral center at San Diego Sexual Medicine. We're seeing people with conditions that are too difficult to be dealt with by the local doctor — too challenging in terms of time management, in terms of knowledge, in terms of equipment, whatever it is.
[1:14:46] We always say we treat the zebras of sexual medicine. And when people call, they say, I have really weird stuff. I don't know if you want to see me. Oh, Dr. Goldstein thrives on patients with really weird stuff. 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.

[1:15:04] Dr. Linda Bluestein: Yeah, absolutely. That totally makes sense. And I like to finish every episode with a hypermobility hack. Can you give us a quick win for people?

[1:15:23] Dr. Irwin Goldstein: When I don't know what's going on in a person's list of complaints, I ask them what they did when they were a kid. EDS people are very commonly gymnastics-oriented, because their bendy bodies — which is your show — are so apparent. They can do all these back things and do gymnastics seriously. So if someone gives me a history that when they were young they did ballet, gymnastics, dance, because they were so mobile, I say, oh, really? Tell me more. And if it's possible, I have them stand up, put their flat feet on the ground, and they can easily touch the palms of their hands right to the floor, or move their elbows in odd positions. And I say, okay, this is orienting me towards a mast cell aberrant condition. Let me ask you more specific questions. Then we get into IC and we get into pain with penetration.
[1:16:29] So for those individuals who have pain, we're now doing 4-millimeter biopsies of their hymen. 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 vestibule tissue. So by numbing the vestibule, it's easy to take a little biopsy of it. And in a few weeks, I can tell them that they have too many nerves and mast cells. It's really an awesome opportunity to get a glimpse into the problem.

[1:17:06] Dr. Sue Goldstein: We only started doing that in October. So we're constantly changing our practice to help. I don't have any hacks for you for EDS — I'm sorry, that's not really my specialty per se. I love seeing patients, I love helping patients, I love teaching patients, I love teaching providers. But I leave the EDS hacks to him.

[1:17:28] Dr. Linda Bluestein: You already gave us a lot of hacks. And I just want to circle back to the hymen biopsy — is this something you can do even if the hymen is, I mean, it's not intact, but it's still there?

[1:17:41] Dr. Sue Goldstein: Intact just means that it's not one solid surface across. There's always hymen there unless someone surgically removes it.

[1:17:48] Dr. Irwin Goldstein: Linda, you will have your hymen until you are 6 feet under. Just going to tell you.

[1:17:56] Dr. Sue Goldstein: And if we have clinicians listening to this: you do not want to do a biopsy of the vestibule directly. That would be extremely painful. That's why, since we now know that the hymen is the same tissue as the vestibule — it has the same nerves and mast cells — we can do the biopsy from there and get the same information to know what's causing the pain in the vestibule.

[1:18:16] Dr. Irwin Goldstein: If you're going to do this, you have to send it to a lab that measures the immunohistochemical staining for nerves and mast cells. You're not going to get it from a regular pathology examination.

[1:18:27] Dr. Sue Goldstein: Our hospital sends it out to a specialty lab.

[1:18:29] Dr. Linda Bluestein: Which is really challenging. I try to get them to do that whenever someone's going to have a colonoscopy or an upper endoscopy. Sometimes they do it, sometimes they don't. It's quite frustrating.

[1:18:40] Dr. Irwin Goldstein: So we have colon biopsies, endometrial biopsies, a lot of other tissue biopsies showing the same thing we see in the vestibule — the infiltrate of nerves and mast cells.

[1:18:49] Dr. Linda Bluestein: Fascinating.

[1:18:50] Dr. Sue Goldstein: Now the next thing we need to do is figure out how to stop all of that so no one has to suffer from this in the future.

[1:18:55] Dr. Linda Bluestein: Right, absolutely. And speaking of your continued efforts at research and all the amazing things that both of you are doing — if you could just finish up by telling us if there's anything special you're working on in terms of research or projects, and also where we can find you.

[1:19:12] Dr. Irwin Goldstein: Sue, you go.

[1:19:14] Dr. Sue Goldstein: A lot of our research recently has been in regenerative therapies — in particular, men with erectile dysfunction, looking at devices that can potentially regenerate the quality of the tissue in the erection chambers. We're still doing research for women with orgasm issues. We're always doing chart reviews — that's a lot of our research, which we do with students so that they have experience doing research, looking at our patient database, comparing outcomes, whether we're looking at mast cells and nerves or looking at the surgery that our spine surgeon does. We work very closely with Dr. Cho Kim of Excel Spine.
[1:19:52] So we have a lot of different kinds of research projects. You can find us both at San Diego Sexual Medicine. You can find us online at sdsm.info — lots of information, we have a huge website. Give us a call at 619-265-8865. We do offer 10-minute courtesy calls, all with Dr. Goldstein. It's fact-finding. He's not going to diagnose and treat you, but it's how we start, and he figures out what testing we would do. And based on that, you can decide whether you want to come see us. San Diego Sexual Medicine. And thank you for having us on today.

[1:20:25] Dr. Irwin Goldstein: And Linda, thank you. Oh my gosh, what information we have shared. It's fabulous.

[1:20:31] Dr. Linda Bluestein: 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 at the conference?

[1:20:37] Dr. Irwin Goldstein: Yes, absolutely.

[1:20:39] Dr. Sue Goldstein: We're both speaking as well.

[1:20:40] Dr. Linda Bluestein: I figured that you were. That organization and what both of you are doing is just so incredibly important for people and quality of life. I'm just so grateful to you for taking the time to speak with me. I know you're both extremely busy, and it was so great to see you again.

[1:21:02] Dr. Irwin Goldstein: Thank you so much. Really.

[1:21:02] Dr. Sue Goldstein: Thank you.

[1:21:08] Dr. Linda Bluestein: 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.
[1:21:23] I 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 telling a friend or family member about the podcast. This helps raise awareness about these complex and often underrecognized conditions.
[1:21:42] 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.com. You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, Twitter, or LinkedIn @HypermobilityMD. You can find the Human Content producing team at Human Content Pods on TikTok and Instagram. You can find full video episodes up every week on YouTube at Bendy Bodies Podcast.
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