Testosterone is Essential for Women with Dr. Kelly Casperson (Ep 131)

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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 Bluestein, the Hypermobility MD. I am so excited today to chat with Dr. Kelly Casperson, a urologist who specializes in hormones and sex medicine. Being married to a urologist, I know a lot more about penises and bladders than the average urologist or pain medicine doctor, but as Dr. Casperson will point out, in medical school we are really not taught much at all about sex. For most people, solutions for sex problems, hormone problems, and urologic problems are too inaccessible. Dr. Kelly Casperson has a book, a podcast, and all kinds of ways that she's changing that. Dr. Kelly Casperson is a board certified urologic surgeon, renowned public speaker, [00:01:00] sex educator, author, and host of the top ranking podcast.

You Are Not Broken. Dr. Kelly blends humor, candor, and science to demystify sexual health, intimacy and midlife wellness. Dr. Casperson's book, You Are Not Broken, Stop Shooting All Over Your Sex Life, is available on Amazon and Audible. In 2025, she will be opening the Casperson Clinic for Hormones and Sex Medicine, expanding her reach even further into women's health.

I'm really excited to have this conversation because sex greatly impacts people who have the triad. People who have mast cell activation syndrome, dysautonomia, and EDS or HSD often have problems with the pelvic floor, the bladder. and sexual function. Hormones can play a really significant role in all of this, so this is a really, really important conversation today.

As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Stick around until the very end so you don't miss any of our special hypermobility hacks. [00:02:00] Here we go.

I am so excited to chat today with Dr. Kasperson. Last week, actually, I interviewed Dr. Goldstein. And so I want people to definitely check out that episode as well. That's episode 130. And so it's really exciting to get to speak with another urologist. I'm actually married to a urologist, which you probably didn't know, but a lot of the listeners do know.

So I got a particular chuckle when I was reading your book, which I want to show, hopefully it's not. in reverse like it is right now, but hopefully everyone can see that it's a fantastic book. Fantastic podcast by the same name. You are not broken. And I love it in the book, uh, early on when you talk about running into an OBGYN friend at ishwish, a sexual medicine conference, and you.

She was saying, uh, that she also did not receive training in sexual medicine, right? When you asked her why she was there. Yep. And, uh, I love how you said, well, then who is taking care of the people sleeping with the people I am giving Viagra to? [00:03:00] Yes. That's the big question. Yeah, that's the big question. Um, so yeah, so let's talk about hormones.

I think first, cause this is something you talk about a lot on your podcast. You have so much fabulous advice and expertise and information to share on this topic and so many people struggle because they can't get this information from their gynecologist. So as you. discussed on a recent episode, you know, we're kind of stuck with the choice of like going to a regular GYN versus a hormone mill.

Um, one of your guests used that term, which I thought was really so accurate. Um, and of course you talk about that these are brain hormones and not sex hormones. So so much advice is, you know, outdated and we're trying to find this middle ground. Um, how do you suggest people go, go about that? Cause it's just so challenging.

Dr. Kelly Casperson: Yeah, well, I think first they should get self educated, whether that's reading podcasts, you know, however, you'd like to learn because in the traditional insurance based system now, and you have a 10 minute doctor visit, you don't have time. That's not where education happens anymore. Um, so [00:04:00] you really do need to self advocate and be like, get over your fear of hormones before you go in because.

That takes time. The fear for hormones is in the zeitgeist. It's in the ether because of the W. H. I. In 2002, probably the most damaging thing we did to health care, uh, and to all humans in the past couple of decades was the dissemination of the W. H. I. I say we, I I did. I was not involved. Um, this was media, um, really portraying a hormone that our body naturally makes as something that's dangerous and something that's trying to kill us.

We still see that perpetuated many people when, because we call breast cancer estrogen positive or progesterone positive. Keep in mind, we could call prostate cancer testosterone positive, but we don't, right? So it is a nomenclature that I think helps perpetuate the myth. It simply means the cancer has receptors for that type of hormone on it.

Um, It doesn't mean that the hormone caused the cancer. Many people don't understand that. [00:05:00] And I like to describe hormones like food. Food doesn't cause monsters, but monsters eat food. So when you have a monster, you gotta get rid of the food, right? Because people are like, why do you have to get rid of it then if it didn't cause it?

It's like, well, because it's food. Get rid of the food, get rid of the monster. Now we can talk about hormones again. So that's, you know, step one is like, don't expect anybody. You have to be comfortable with hormones and the idea of it because at the end of the day, if you're lucky, you're going to live 40 years past your functioning ovaries.

And ultimately nobody is more in charge of what you're going 

Dr. Linda Bluestein: to do to your body than you. Yeah. And so many things like, you know, UTIs, you talk a lot about vaginal estrogen and how it's not just useful for having intercourse, but it's also. reduces UTIs by like 50%, right? So that's, yeah. 

Dr. Kelly Casperson: I mean, a lot of, a lot of urologists don't know that because the, the literature is published in the menopause journals.

And besides me, not many urologists are reading the menopause journals. So vaginal estrogen [00:06:00] is equivalent to anticholinergics, which is kind of the classic bread and butter medication that you're going to be offered for overactive bladder urgency, frequency, getting up at night, leaking with running water, leaking out of the way to the toilet.

That's. Overactive bladder or OAB. So vaginal estrogen is equivalent in efficacy to the anticholinergic medications and doesn't have the bad nasty side effects of anticholinergics. Plus it decreases urinary tract infections by 50 percent 

Dr. Linda Bluestein: and 

Dr. Kelly Casperson: the overactive bladder medications don't do that. 

Dr. Linda Bluestein: Sure, sure.

And you also talk about, you know, not waiting until you have really significant. Atrophy in the vagina and you know, people who this podcast is geared towards people who have connective tissue disorders. So they're even more prone towards fragile tissues and, and, and things like that. So I think, you know, it's so important for people to have access to, to that kind of therapy.

But what about hormones? What about systemic hormones? What should we know about? About, about systemic hormones and when they would [00:07:00] be most appropriate. And I understand like, you know, in this, in this conversation that, you know, we could. Obviously talk about this for many, many, many hours, but just some general information that people might benefit from.

Dr. Kelly Casperson: I mean, I think there's just so many myths still, right? So what happened after the, after the WHI is women are suffering. And so we tried to make them feel more safe by being like, Hey, these are bioidentical. And then that got kind of looped into being compounded, right? And there's these words that people don't actually know what they mean.

So it's easy just to break those down. So bioidentical just means the exact same thing that your body makes. So vitamin D. thyroid, insulin. Those are all bioidentical. You're just replacing what your body had and lost, right? Versus something synthetic like a antidepressant, a statin, a blood pressure med, right?

So most medications are created to help our body, but some are exactly what our body made. And that's what bioidentical means. There are FDA approved bioidentical hormones that your insurance covers. That's [00:08:00] estradiol, progesterone, and testosterone. That's the other big myth that it has to be expensive. It has to be compounded.

It has to be bespoke. No, it doesn't. But there's this big myth that like what's what we have that's FDA approved and that insurance covers is somehow not as good as the compounded stuff. Compounded is there that that means bespoke. It means made specifically for you tends to be more expensive. not covered by your insurance.

Some people need that if they have reactions to like adhesives or the additives or something, but most people don't. And I always say you shouldn't have to remortgage your house to pay for 40 years of hormones. So I think people, you know, they get led into like, you know, more expensive is better, but you can actually do this pretty darn cheap.

I always say pay for your experts. Don't pay for your, don't pay, you know, an arm and a leg for the hormones. 

Dr. Linda Bluestein: Yeah. And, and I think that's also really challenging because so many, like the hormone mills are, they're doing things like pellets and things like that, that right. You're not just paying for the expert, [00:09:00] but you're paying a fortune for the therapy as well.

Dr. Kelly Casperson: You are. And you know, pellets are the highest dose. They also are a small incision, not a big deal, but a small incision. And again, if you plan on living 40 years past the age of your ovaries, is that a long term plan? Some people, I think some people do better with higher hormones, but most people shouldn't start there.

I would say you need to earn, you need to earn your pellet. Don't go from zero to Mount Everest. I actually did a. An Oprah daily op ed on pellets. If anybody wants to go, go to Oprah daily and just type in testosterone in the search bar and you'll get a nice pro and con on a discussion on 

Dr. Linda Bluestein: that. Wonderful.

We will be sure to add a link to that in the show notes. Um, and I want to talk about testosterone because. You talk so well in the book and on your podcast about how females have testosterone, but we often forget that or we don't know that. We were never taught that in the first place. Yeah, I think we're not taught that.

I 

Dr. Kelly Casperson: mean, I wasn't taught in med school. Does your, does your partner, the urologist know that? Right? Like we [00:10:00] weren't 

Dr. Linda Bluestein: taught 

Dr. Kelly Casperson: that. 

Dr. Linda Bluestein: Yeah. I think actually he only knew that after, so I actually have seen Dr. Irwin as a, Dr. Goldstein as a patient and I think it was only after I saw him and we had those kinds of conversations that, yeah, I don't think he really realized that before.

I didn't know that either. I'm an anesthesiologist, so it makes a little bit more sense that I didn't know. So I didn't, I didn't learn anything about sex in my, uh, in my training. Yeah. 

Dr. Kelly Casperson: Right. Airway, breathing, circulation, sex. 

Dr. Linda Bluestein: Right. Exactly. 

Dr. Kelly Casperson: Yeah. I mean, I was, I was well into my career. When the whole testosterone conversation started and I've kind of like taken it on, not that I'm like the, the national spokesperson for it, but I'm a urologist and that really helps me in a couple of ways.

Number one, I give 10 times the testosterone dose to men every single day and they do fine, right? So, like, I'm used to big, big doses of testosterone. A woman is 1 10th the dose. Right? So it's [00:11:00] like, that's nothing. So, women make four times the amount of testosterone than estrogen when they're cycling, right?

Not post menopause. It's just ten to twenty times less than what men make. So another way to think about it is like, men make a ton of testosterone compared to women. Um, but we make more than estrogen. And here we go around saying like, estrogen's our hormone. It's like, well In smaller amounts, truthfully, it's the other bias is that we don't have an FDA approved product at this time.

So it kind of perpetuates the myth that it's not for us that it's unsafe, you know, insurance doesn't cover it when you don't have an FDA approved product. So there are a lot of barriers. It's going to, it's, it's changing. I have that information, right? So, so I can tell people it's changing, but, uh, we'll see how fast that changes.

But I think once we get an FDA approved product, it's really going to. Open up the conversation. 

Dr. Linda Bluestein: Well, it's, it's fascinating too, because there's even, there must [00:12:00] be some regulations around the labs. So because when I had my testosterone level checked the last time, they wouldn't put it up on the portal.

They would only mail it to me. Yeah. Yeah, all the rest of my lab showed up on the portal, but for testosterone, I forget what it said actually in the portal. 

Dr. Kelly Casperson: I'm curious why. 

Dr. Linda Bluestein: Yeah. Yeah. It was the other 

Dr. Kelly Casperson: thing to know about labs. First of all, women have to get the mass spectrometry lab because if you just get your standard testosterone, which is the lab made for men, that's the immunoassay, right?

So the immunoassay is crap for levels below a hundred. So you're getting a number. It's pretty much meaningless because the lab can't. Is an accurate at lower levels, so that's the first thing if you're going to get your testosterone checked, make sure it's a mass spec lab. It'll say in quest. It'll say male female child testosterone.

That's like the way of knowing that's the mass spec. And then the reference ranges are different between labs, right? So lab quest is different than [00:13:00] quest. And so people will be like, my doctor said my testosterone is normal, right? Yeah. And they'll show it to me and it's three and I'm like, three is not normal.

Three is low, but that's normal in the lab range. So even the ranges are very hard to interpret and where a lot of women feel better physiologically is a little bit above what air quotes for the podcast people normal is on the labs. So I have to tell people like, you need to realize this is flagged as high.

And if you see other doctors look at this, they're going to freak out if they don't have the knowledge, right? I know all the studies. So I know, I know what normal is. I know what physiologic, I know what the studies are for libido. I know how high people are. So I'm very comfortable being like, there's more to the story than these labs show.

Dr. Linda Bluestein: Okay. And that's true even for free testosterone, not just looking at total. Free testosterone is probably worthless. Really? Really? Interesting. So, so you're looking at total testosterone then? Okay. Good 

Dr. Kelly Casperson: to know. You [00:14:00] can use it free testosterone if you're like, I don't feel like where I should be in my, but my testosterone numbers like good.

I always check a sex hormone binding globulin. You gotta know if that's high, you know, you might have to push your testosterone dose up if you have high SHBG. But yeah, a lot of experts say we don't know what normal is for free testosterone. We don't know that free testosterone is correlated with symptom improvement.

So by and large, free testosterone, it kind of came in as the trendy thing and it's kind of dying again. 

Dr. Linda Bluestein: That's so interesting because it's very common for people with symptomatic joint hypermobility to be on birth control, um, to try to regulate periods as you know, uh, so many people have really painful periods and a lot of Okay.

And lowers testosterone, which, you know, we especially need with our hypermobile unstable joints. We really need that testosterone to help us build muscle mass and protect our joints. [00:15:00] But it sounds like. We're actually caught in a little bit of this, uh, cycle where testosterone is lower. And then in terms of the labs, uh, how do we interpret that then if our sex hormone binding globulin is high, how do we interpret the testosterone level then?

Dr. Kelly Casperson: Yeah. You might just need more testosterone. 

Dr. Linda Bluestein: Okay. Cause you've got some balance 

Dr. Kelly Casperson: stuff, but yeah, there is not some people still love the free testosterone. You can use it. But again, remember, we're in our infancy and understanding this, like, and not to complicate it for people, but for people to under, because so many women are like, just give me the lab level I need to be at.

Right. And it's like, dude, true experts know, like what the testosterone is doing in your brain is actually different than what, what it's measuring in your bloodstream. And to complicate it more, how many androgen receptors do you have? How sensitive are they to picking up testosterone, right? There's the whole receptor question, which we can't study at all.

So for people to lock in, like, it's got to be this, it's got to be this, it's got to be this dose is like, no, that's [00:16:00] oversimplifying a very complex and poorly understood system at this point. 

Dr. Linda Bluestein: And for women that are interested in pursuing testosterone therapy, are there certain contraindications that we should be aware of?

Dr. Kelly Casperson: If you already have high, like, you know, a PCOS person, that might not be a great candidate for testosterone. Um, it's pretty rare. I mean, the guidelines say liver disease, but I mean, you're going to have to have a stinking bad liver. Transdermal's not, a lot of that comes from like old oral medications. A transdermal doesn't get processed through your liver, right?

You know physiology. So I don't, I don't fully agree with that. Also, in the guidelines, the source is not cited for that contraindication. So. I take that one with a grain of salt. 

Dr. Linda Bluestein: So in terms of contraindications, there's, there's really not a lot. I mean, cause you know, there's also the, you talk about this on your podcast, uh, excess testosterone being converted into estrogen and then potentially, you know, raising the risk of breast cancer.

I've heard this from other doctors. Is that true? Well, I'm asking you. Is it true? [00:17:00] Uh, have we done studies? Yeah. I don't think so. I don't think so. 

Dr. Kelly Casperson: There's multiple studies. Okay. 

Dr. Linda Bluestein: Okay. And it shows that that's natural. So you give a woman 

Dr. Kelly Casperson: testosterone. Does her estrogen go up when you give her testosterone?

We have multiple studies on that. Keep in mind, let's, let's think physiology, right? Let's use our brains. We went to med school. Women have four times the amount of testosterone than estrogen in their body naturally. So by definition, all their testosterone is not converting to estrogen. 

Dr. Linda Bluestein: Correct. Yeah. 

Dr. Kelly Casperson: Okay, cool.

So, let's give her testosterone. Let's check her estrogen before we give her testosterone and after we give her testosterone. That's a good way to answer that question. We have multiple studies. Estrogen doesn't go up. Another question. What if we give somebody 10 times the amount of testosterone? They're called trans men.

Does all of it just convert to estrogen? Definitely not. No. Yeah. And that's 10 times the dose. So when people say that, number one, they're uneducated about testosterone. [00:18:00] Number two, they're using fear as a reason for women to not use testosterone. 

Dr. Linda Bluestein: And I've seen in my own clinical practice, people who are trans men, actually their pain often goes down and the reverse is often true.

Trans women, their, their pain and joint instability often goes up. So we know that, yeah, yeah. So we know that these hormones are really, really important. 

Dr. Kelly Casperson: Super interesting. There's, I mean, there's, we need more. I like, believe me, as the testosterone expert, I never want to actually sound like we have enough data, but, but we got to use what we have to.

To break all these myths, right? And, um, the orthopedic data, looking at people with low testosterone, any gender, low testosterone, increased risk of needing joint replacements, you know, increased risk of knee osteoarthritis, right, so there's, there is data that these hormones are really important for pain, for joint function, for musculoskeletal.

Dr. Linda Bluestein: And [00:19:00] you're, you have so much expertise in sex and I have a lot of expertise in hypermobility conditions like Ehlers Danlos and that combination is something that, you know, really needs to be talked about more. And so I'm so excited to chat with you and just chatted with Dr. Goldstein and I'm actually presenting at ishwish next month.

Oh, awesome. 

Dr. Kelly Casperson: Yeah. It sounds like it. Can you believe it's next month? I can't. 

Dr. Linda Bluestein: I can't. I was listening. You've 

Dr. Kelly Casperson: had Andrew Goldstein on your podcast though, right? Because he's like the big expert in hypermobility. 

Dr. Linda Bluestein: Uh, no, I have not. I would love to. Well, yeah, you need Andrew 

Dr. Kelly Casperson: Goldstein. Yeah. 

Dr. Linda Bluestein: Okay. I would love to, uh, obviously.

Okay. Okay. I will definitely, uh, look, look into that for sure. There's a group on Facebook called Sextacular EDS Zebras and they have over 8, 000 members. And it's a place where people of all genders talk about sex as it relates to hypermobile bodies and they're just clamoring for advice and information about everything from vaginal atrophy to why they're allergic to spermicide.

Um, there's so many problems that people have because they get this [00:20:00] trifecta of, you know, the connective tissue disorders, mast cell activation syndrome, and dysautonomia. So they have all these different things going on. They're trying to improve their libidos and enjoy sex in a way that's safe and pain free, which is why I love your podcast because it's, So pro sex and feeling good in your body and things like that.

Are there certain things that you think hyper mobile people should know about sexual health, neurologic function, anything that's specific to that? And of course I will definitely look for Andrew Goldstein as well. Dr. Andrew Goldstein. I 

Dr. Kelly Casperson: mean, I think everybody needs a good pelvic floor PT. Mm hmm. Like that have that person have that person when you're doing well.

So you have that person when you're not doing well. Yeah, like they're just, you know, where, where are you weak? Where are you strong? Where are you guarding? Where, you know, we're all these like imperfect off balance people all the time until something breaks, you know, so the physical therapists are which are hard to come by.

They're not everywhere, but they're amazing. [00:21:00] And, you know, whenever I give a talk, it's super funny because whenever I give a talk about sex or whatever, the PTs always raise their hand and they're like, don't forget about the PTs. And I'm like, you guys, I never forget about the PTs, like, come on. But they're very, they want to be seen.

They want to be utilized. They know they're great tools in the toolbox. So to me, I'd be like, if you haven't seen it. a good pelvic floor PT yet? They help with pain with sex. They help with bladder leakage. They help, you know, we, we've got a much higher rate of prolapse in the population with connective tissue disorders.

So what can I do to stay strong? Um, and then for me, I'd be like, dude, you don't need a second hit. So understand what perimenopause is understand what menopause is vaginal estrogen safe enough to be a preventative medication. I would start thinking about. Systemic hormones, you know, getting curious about at what point you might want to start doing that.

Remember, you know, there's this big drama in the menopause world right now because they're like [00:22:00] only symptomatic people should use hormones. Osteoporosis is not symptomatic. And we have, uh, uh, hormones are estrogen is FDA approved for the prevention of osteoporosis. So to me, it's a very poor argument to tell women that they need, I mean, the other thing that happens to women is they go to the doctor and then the doctor's like, but is it bad enough?

Right. Right. And men never get asked that. Men are like, I have low libido and erectile dysfunction. No urologist is ever like, is it bad enough? Like, men are never challenged once they're in the physician's office. I mean, that's the other power of us as urologists, right, is I take care of the guys.

Gynecologists don't understand, like, we treat these other people like their problem is real and deserving of treatment. So that's how I always think about, you know, women's issues is like, would we say that to a man? Right. So, you know, if a man comes in, so depending upon your study, 20 to 40 percent of men will have low testosterone.

Uh, most people don't [00:23:00] outlive the function of their testicles, but some do. And then some there's metabolic or like lifestyle reasons that their testosterone can go down, but we never like a guy comes in with low testosterone. We're never like. Are you symptomatic enough? Are you, are you bothered enough by this?

Low testosterone in men is associated with dementia, bone fracture, depression, metabolic syndrome, and diabetes, right? Like, nobody's going to force a guy to take testosterone, but they're going to have the conversation with them. 

Dr. Linda Bluestein: Yeah, that's so interesting. And I know my husband, actually, he was doing, um, Uh, prostate cancer was his specialty and he did a lot of robotic prostatectomy.

So, you know, of course, that's also in people's minds about prostate cancer. I know that we don't want to digress too much, but, um, balancing that as well. Like, what are your thoughts on that? So as to not Are you asking does 

Dr. Kelly Casperson: testosterone cause prostate cancer? 

Dr. Linda Bluestein: If you take supplemental testosterone, does that increase your risk of prostate cancer?

Dr. Kelly Casperson: No. 

Dr. Linda Bluestein: Does not really. End of conversation. That case has been closed for a long time. Interesting. [00:24:00] Okay. Okay. Good to know. All right. Busting 

Dr. Kelly Casperson: myths, my friend. 

Dr. Linda Bluestein: Yeah. I love it. I love it. Busting myths is a very, very important thing to do. So that's, that's fantastic. Let's talk about the bladder because bladder pain, urgency, frequency, and continence are all so common in people with connective tissue disorders.

And we also know that the bladder is lined with mast cells, so mast cell activation syndrome plays a role. Connective tissue plays a role. Autonomic nervous system dysfunction like dysautonomia. Um, how do you determine the cause of bladder problems and what you can do about them? 

Dr. Kelly Casperson: I listen to a woman. The big thing that's lacking in healthcare these days, listening to a woman.

When does it hurt? What makes it feel better? When did this, when did this start? Oh, it started at 50 when your periods ended, right? Like the amount of women that come in and they're like, I've been told I have interstitial cystitis and I'm like, do you want a chronic incurable disease? Like, not that anybody wants that, but I'm like, do you want, and they're like, no.

And I'm like, why don't we just call it a [00:25:00] sensitive bladder? They've got better with vaginal estrogen, right? Instead, they slap this heavy brick of a backpack of chronic disease on their list of like, and the amount of women I see in there, like, oh, I have interstitial cystitis, but it hasn't bothered me for 20 years.

I'm like, is it quite possible you don't have interstitial cystitis? Like why carry the burden of that label around? And so I think it's really easy just to tell women, Oh, you have cystitis is a diagnosis of exclusion. So you want to make sure it's not cancer. It's not an infection. It's not hypertonic pelvic floor.

It's not low hormones. You know, it's not all of these other things that, because the, the pelvis can't tell us, you know, people pee frequently, and people just think it's an infection. It can be lots of other things. And so it's a good workup, but really listening to the woman matters. 

Dr. Linda Bluestein: Yeah, definitely. I see so many people that have a diagnosis of interstitial cystitis.

It's so, so common. 

Dr. Kelly Casperson: Most experts will be like, [00:26:00] most experts will agree they take more interstitial cystitis away from people than give it to people. 

Dr. Linda Bluestein: Really? Wow. So for bladder pain, what are, besides, uh, vaginal estrogen, what are some other things that you have found to be helpful? 

Dr. Kelly Casperson: Yeah. Well, first of all, you question if it's actually bladder pain.

Most women don't know the names of their, and not to put down women, none of us got this education, but if I say point to where it hurts and you point to your clitoris, that is not bladder pain. If I say point to where it hurts and you point to your urethra or your vulva, that is not bladder pain. If I, if I say point to where it hurts and you point at your belly button, that's not bladder pain.

Right, so so many, the bladder just gets blamed for so many like air quotes down there issues of like, you need a good history and physical. Is it truly bladder pain? And classic bladder pain is it hurts when it's filling, it's relieved by voiding, because it's this stretch [00:27:00] that hurts. Um, not always, but that's kind of the classic symptom, so I'll ask women that.

Do you have that specific symptom? No, I don't. And many, many people will say it's the vulva hurts. Like, and people will call it the bladder, or, you know, or it'll be a psoas muscle issue, and they'll call it the bladder. So I always, my first job is to question if it's actually the bladder. Bladder's my favorite organ.

It gets blamed for everything. The bladder, this is how I describe the bladder, the bladder's the kindergartner. When the kindergartner is acting up, is it really the kindergartner's fault or is the home life bad? Right? So investigate the pelvis, the muscles, the hormones, the tissues, the vulva, the urethra, all of those things before you just blame the kindergartner as having a problem.

Dr. Linda Bluestein: Yeah, no, that makes a lot of sense. And I did very recently. interview a pelvic floor physical therapist who, who's also my physical therapist. And I've had pelvic floor physical therapy numerous times, um, throughout my, I have EDS actually. So that's how I got involved in [00:28:00] doing all of this. And, uh, yeah, they, they work wonders for so many problems.

Like, 

Dr. Kelly Casperson: aren't they amazing? 

Dr. Linda Bluestein: Yeah, they are amazing. They don't want to be 

Dr. Kelly Casperson: forgotten. 

Dr. Linda Bluestein: Yeah, no, and they shouldn't be. They shouldn't be there. They're critically important. Yeah, 

Dr. Kelly Casperson: I tell people that, you know, sex and a healthy pelvis is a three legged stool. I'm only one of those legs because people come to me and they, you know, they think I'm going to solve all the problems.

And I'm like, you need a sec, usually a sex therapist because you've got a whole bunch of baggage. Especially if there's a pain cycle set up, you need a pelvic floor physical therapist to help with the muscles, you can have weak muscles and tight muscles at the exact same time, right? Like that's the big myth.

People are like, I can't I can't possibly blah, blah, blah. And then you need me for like the hormones, any sort of, you know, surgical problem. We can look in the bladder with the camera, you know, we can do all of our stuff. And Frankly, I, I do some of the best vulva exams, right? Like sex therapists can't look at your vulva.

Physical therapists can. They're actually, the trained ones are actually pretty good, right? But somebody who actually like [00:29:00] understands what a exam, a pelvic exam is to be like, Oh, you've got lichen sclerosis. You've got severe atrophy, you know, or things look really great, but your right side of your pelvis is super tight, right?

So it's three legged stool. If you don't have any leg of that stool, stool falls down. 

Dr. Linda Bluestein: Yeah, no, I think that makes a lot of sense and the, the best place to find a good sex therapist. Do you have any suggestions for that? ASECT. A A A S E C T. Okay. I know we put the link. Type in your zip code. Yeah, we put in the link for our last episode, but we'll put in the link to the, for this episode as well so people can also find them 

Dr. Kelly Casperson: on the ishwish, you know, a sex therapist or members of ishwish as well.

Ishwish is really the sweet. The sweet organization because they're people who are comfortable with sex. It's not just doctors, psychiatrists, psychologists, physical therapists, sex therapists, all the people. Um, and they understand the role of hormones in a good sex life. So they're actually pretty darn good for hormones as well.

[00:30:00] Wonderful. 

Dr. Linda Bluestein: Okay. We're going to take a quick break and when we come back, we are going to talk about erectile dysfunction.

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.

Now seeking donors, volunteers, and partners. Patient advocacy and support programs available now. Travel grants launching in 2025. Learn more, shop for a cause at their swag store, and join the revolution at edsguardians. org. Thank you so much for listening to Bendy Bodies. We really appreciate your support.

It really helps the podcast when you like, subscribe and comment on YouTube and follow rate and review on all audio platforms. This helps us reach so many more people and spread the information to everyone. Thank you so much again and enjoy the rest of the episode.[00:31:00] 

Okay, we're back with Dr. Kasperson and I did want to ask you some questions about erectile dysfunction. Um, you know, a lot of my patients have dysautonomia, they might have POTS or another condition of dysautonomia. Um, and a lot of them have tethered cort, which is common with EDS and contribute, can contribute to erectile dysfunction as well, as well as bladder problems, of course.

Um, have you seen this in your? population at all, or is that something that Not 

Dr. Kelly Casperson: as much. I don't, I don't have many male connective tissue disorder patients. 

Dr. Linda Bluestein: Okay. Um, do you see very many females with a tethered cord or pelvic organ prolapse or anything like that? Tons of prolapse. Okay. Less tethered cord.

And with the prolapse, is pelvic floor physical therapy often helpful? Of course, surgery is sometimes necessary, but What are your thoughts? Oh, 

Dr. Kelly Casperson: pelvic floor therapy, always, it's always the right answer. The concern with connective tissue disorders is like, listen, your recurrence risk after [00:32:00] surgery is higher because you just don't have that natural strength to So things back together.

So in this might be dogma more than like an absolute. But in many cases, they say delay the surgery until you're like, I'm really ready for the surgery, knowing you might need more than one surgery in your life that I can't tell you that that's a guideline. But that seems to be kind of the common thought of like, let's keep you functional.

And preserve function, but don't, not that anybody jumps into surgery, but like yours might not give you 10 years, right? So maybe, maybe consider when, when you want to have these. 

Dr. Linda Bluestein: Yeah, absolutely. I, I don't think too many people, I agree, you know, like are super gung ho, but sometimes, yeah, we can end up having, I've had surgeries that I regret having.

So yeah, 

Dr. Kelly Casperson: well, I mean, people don't understand this, right? When you go to a surgeon. You'll get a surgical opinion, right? Versus like, people don't know, [00:33:00] people see me, they don't understand that I'm a surgeon, right? And then they don't understand why I can't help all of the things of all of their problems.

It's like, because there are other experts who need to be on your team, not just the surgeon. 

Dr. Linda Bluestein: So you have built quite a Quite an empire between your, your book, your courses, your talks, uh, memberships, podcasts, um, all in service of women helping to understand and care for their bodies. And I think it's amazing how you're, you've created this incredible community and people have told me about your videos and have sent me things.

And I'd love to be more like you. When I grow up, I think you're such an inspiration. You're probably way younger than me, but, um, you know, I think it's, it's just so cool how you, how you've done this. So I'd love to know if there's certain lessons that you've learned along the way about helping people, you know, beyond the clinic setting, um, if you have any secrets to your success.

Well, you 

Dr. Kelly Casperson: got to get over fear. 

Dr. Linda Bluestein: Yeah. 

Dr. Kelly Casperson: Get rid of fear. You can, you can do anything. And, you know, it's, it's a lot of mind work, right? Like, [00:34:00] Why are you doing it? Who do you want to serve? Why show up? Who do you want to talk to? You know, like, what kind of difference do you want to make in the world? So I think there's a lot of personal growth in The journey, and I think if you're a health care professional, if you're an expert in anything, if you're an accountant, right, like if you're an expert in anything and you're a good communicator, you're unstoppable.

Those are, those are two incredibly valuable skills and they rarely come in the same person. So if you can be an expert and communicate well. 

Dr. Linda Bluestein: You're unstoppable. Okay. And I know that you are also, I don't know if this is a fairly recent thing, but you're doing Instagram lives while you're recording a podcast.

Yeah. And I was curious to know how that's working out. People 

Dr. Kelly Casperson: seem to like it. Nobody's complained so far. But I mean, I do a lot better in front of an audience, like me talking to myself in my basement. It's kind of like, what the hell [00:35:00] am I doing? So I just like I like having the people there kind of interacting with and they throw me questions, you know, that are great questions.

And so I just incorporate that into the podcast. 

Dr. Linda Bluestein: Yeah, so That, uh, it, it comes through, it comes through that you really like engaging, yeah, the energy and, um, clearly your audience loves you. And, and, uh, so it's really, it's really obvious that you love what you're doing. And, uh, I totally agree with you about the confidence thing.

That's something I'm working on. Um, it's, it's hard. It's hard. Oh, it's hard. 

Dr. Kelly Casperson: Listen, you're going to die. You're going to die, and people are going to forget you. So if you're not living your true voice and your true self and your true mission right now, like there's no round two as far as we know, you know, and that really helps me get over like any fear [00:36:00] because you're like, dude, you're, you're meaningless.

Like we are all very meaningless. And in the meantime. I save lives. I save lives. I've saved marriages. I've stopped. I've prevented suicides. I've cured pain. I've ended one marriage, which I'd laugh about because that was actually a man who was like, you made me realize that I'm worthy of love and I can no longer be in this release.

Right? So I always joke. I'm like the amount of marriages I've saved and I've ended one, but it was probably good. But it's like in the meantime, between like, you know, birth and death. Yeah. 

Dr. Linda Bluestein: Do some badass shit that, that, uh, that makes sense. Um, okay. So we got some questions from, from listeners that I'd like to do kind of rapid fire and, and, uh, some of them there might be just like a simple yes or no, uh, answer and some of these might've already covered.

So we'll, we'll, we'll, uh, we'll just get through some of these if we can. So the first one has to do, the person [00:37:00] says I have interstitial cystitis, which of course we've clarified them. Yeah. So I'm 

Dr. Kelly Casperson: already suspect. Sure you 

Dr. Linda Bluestein: do. Okay. Right. We'll go with it though. Right. And pelvic floor dysfunction, which, which I do want to clarify too, because this happened after I released the episode on pelvic floor physical therapy and a number of people sounds like they've, they just thought Kegels were like all that.

pelvic floor PT was, right? And it's like, no, absolutely not. Um, so this person says I'm nodding 

Dr. Kelly Casperson: in agreement. 

Dr. Linda Bluestein: Yeah. Yes. Yes. I appreciate you saying that because of course people who are listening that we, we put this on YouTube also. So people watching on YouTube are seeing the nodding in agreement, but not the people listening yet.

Yeah. Um, okay. So this is sex feels like I'm being cut with razor blades. Is there anything that can help? So of course this, I hope so. Yeah. Stop. Stop. Well, that goes back to your question. Like, if it's, I mean, I guess you can, if it's truly the bladder, then yes, that could be painful with sex, but that. Now that you were explaining this makes it sound like more.

Yeah, maybe a razor blade razor 

Dr. Kelly Casperson: blazes. That's do you understand now? I say you listen to the woman, right? [00:38:00] Right? She will tell you what's happening You just have to listen And so whoever saw her and her and didn't hear razor blades and then told her she had interstitial cystitis No. Right. Okay. So razor blades, stereotypically is vulva entrance pain, um, bladder pains, more like deeper penetration, actually kind of hitting the bladder, you know, like on a, on a pelvic exam when you're like, Oh, right.

That tends to be like the more bladder discomfort with intimacy. Razor blades is usually entrance pain. So I'm either thinking, of course, I'm thinking general urinary syndrome of menopause. Is this woman on vaginal estrogen? How old is she? Is she on birth control? Does she have atrophy because of birth control?

Um, you know, what's the pelvic floor physical therapist thing? Can she reproduce it? What's her exam look like? Uh, does she have vulvodynia? Is she 23? looks great, but you can't touch it with a, with a q tip, right? And so really getting people to understand. [00:39:00] Exams and seeing somebody who can hear your story and break that all apart and I don't say all that to overwhelm people.

I say that to be like, if at first you don't succeed, try again. This is how experts think, right? It's again going back to like, but what testosterone lab number should I get? It's like, no, right? Like the experts know, like, it's not just that. And I would say you're perpetuating a pain cycle. If you're putting up with razor blades with pain, you will never desire it.

Women come in and they're like, I have pain with sex and low desire. I'm like, no, you have one thing you have pain with sex. Nobody desires that. Right. You fix the sex. You have better sex and working on staying intimate and connected. But not doing the razor blade y things. Right, because the very common thing is, it's razor blade y, so we do nothing.

And that's a big, like, 0 to 60. Right, and intimacy and connection dwindles. [00:40:00] So you can stay connected and intimate, just don't do the razor blade y things. 

Dr. Linda Bluestein: You mentioned earlier, lichen, oh, I'm probably gonna prompt this. Lichen sclerosis and lichen planus or, or like, and or lichen planus. I know they're different, but, um, somebody asked, how can I tell the difference and what can I do if standard steroids don't work?

Dr. Kelly Casperson: See an expert, get a biopsy. Make sure you have the right diagnosis. 

Dr. Linda Bluestein: Is that something that's misdiagnosed fairly frequently? 

Dr. Kelly Casperson: Oh, yeah. How many people actually learn how to examine a vulva in medical school? Not very many. And of all the other people who aren't doctors, do you think their training was any better?

If they went to an ishwish fall course, it is like that, you get, you get trained how to do vulva exams at the ishwish fall course. It's exceptional. But most people don't know. I mean, the amount of women who come see me who are like, four gynecologists have told me my exam is normal. Like, you don't have a normal exam, like, you don't even have a clitoris.[00:41:00] 

Did you just say you don't even have a clitoris? Yeah, because it's atrophic and 

Dr. Linda Bluestein: phymotic and you can't see it. Oh, interesting, okay. 

Dr. Kelly Casperson: I mean, come on, they have a clitoris, you just, you know what I'm saying. 

Dr. Linda Bluestein: Yeah, yeah, yeah. Makes sense. All right. The next question. How do I help my husband understand that my chronic pain, fatigue, and stress affect my desire in negative ways that have nothing to do with him?

I know it's hard not to take things personally, but it's become a wedge of resentment towards me and he has, I feel like he has no empathy or understanding of my situation. 

Dr. Kelly Casperson: Explain it to him like that. Say that to him. And if he doesn't get it, you need to see a therapist. Because if he doesn't truly care about you and just cares about your ability to give you sex, that's a big red flag.

Many people don't want to be with people like that. So, communication is key. And if you don't have the tools to communicate between the two of you, seek professional help. They're amazing. 

Dr. Linda Bluestein: Yeah, [00:42:00] they could be very helpful. What about, um, advice on addressing sexual dysfunction like lack of sex drive or inability to orgasm caused by POTS and dysautonomia, especially when taking beta blockers?

That's a pretty specific question. 

Dr. Kelly Casperson: Yeah, you got to work on pleasure. Pleasure, pleasure, pleasure. What feels good. Double down, double down on what feels good. And hey, you can see a sex med doctor, you know, there, there are off label, there's no on label orgasm medications, but I always think like, what can I change?

What can I tweak? How are your hormones? Right? Are you using vaginal estrogen? Have you used a vibrator? Do you think that sex is just putting something in your vagina? Right? Like, there's so much to cover that it's really just start getting an education. Because remember, 100 percent of people, unless they had an amazing mom, did not get sex ed.

You got a disease and pregnancy prevention plan, you did not get sex ed. So, There, you know, people are like, Oh, I have POTS and I'm on a beta blocker, that's how it is. It's like, yeah, but you're [00:43:00] missing 90 percent of all the other things that you can improve on. 

Dr. Linda Bluestein: And speaking of, um, could you talk a little bit about the drug, um, Addy, the medication Addy and, and, or that other class of, uh, medications that is designed to help.

With desire and women, right? Is that what it's for? Okay. 

Dr. Kelly Casperson: Yeah. So Addie's the brand name. The generic is flibanserin. And then the other. So that's once daily dosing taken at night. And then the other one is an injectable on demand called Vilece or the generic is bremelanotide. They've both been FDA approved for low desire in premenopausal women for years, not widely utilized for two reasons.

Number one, nobody knows about them. Number two, insurance is it. It's awful because insurance says sexual health isn't health and we don't want to cover it. So both of the medications work. They're both very safe. All medications have side effects. So you know, it irks me when people are like, is it safe?

And I'm like, well, cars [00:44:00] aren't safe, right? But we use them every day. But they're relatively safe for most people on most days. So. But they, but they kill 100, 000 people a year, right? So, you know, the, the, is it safe is always kind of like a, a, a trigger word for people like, Oh, you don't understand that like all medications have risks, but it doesn't mean you're going to get a risk, right?

So risks are dizziness, um, nausea for the injectable one, the, the bigger risks for bigger meaning more common for Addie is slight weight loss and better sleep. So some would argue that. Those are not that bad. Um, don't take, don't drink more than two glasses of alcohol in a night. If you take Addi, then skip a dose just because it can lower blood pressure.

But the big myth is that you can't drink at all. Now, I would argue drinking is actually very bad for sex life and for health overall. So what are you doing? But for people who enjoy that, just don't drink more than two, [00:45:00] uh, in a day. And what else can I tell you about them? They work by increasing dopamine.

So dopamine is the neurotransmitter in our brain that makes you want to seek something out. I want to go get some Haagen Dazs mint chip. I want to go scroll on my phone. I want to go get sexual activity. That is the dopamine pathway. So those two medications work by increasing dopamine, increasing your interest in sex, and then hormones also increase the dopamine pathway.

And that's why both estrogen and testosterone are known to increase desire. 

Dr. Linda Bluestein: And those are only approved on premenopausal women. 

Dr. Kelly Casperson: That's true. 

Dr. Linda Bluestein: Those medications. 

Dr. Kelly Casperson: They do work in postmenopausal women. And I tell, I'm like, do you think that your insurance company or the pharmacy is going to like come to your house and see if you have tampons in the closet?

Like, you know, people get so hung up on that. And I'm like, most people don't know if they're in menopause or not. If they're like, 52 and had a hysterectomy, so I'm not going to ride that line super hard and we have [00:46:00] data that it works in postmenopausal um, Addy is approved in postmenopausal in Canada. So the drug companies aren't saying it didn't work.

It does work in postmenopausal postmenopausal women have dopamine pathways to the FDA put an artificial. Line in the sand. 

Dr. Linda Bluestein: Really? So it's not that they're unsafe in post menopausal women. 

Dr. Kelly Casperson: It's that the FDA thinks there's a big difference between post menopausal and pre menopausal women. And remember, definition of menopause is arbitrary and made up.

A man said it's 12 months after your last period. That's why not six months? Why not 18 months? Why not 12 months in a day? So at the end of the day, the definition of menopause is arbitrary. 

Dr. Linda Bluestein: And it sounds like the FDA thinks that it's not important for women to have sex or desire sex then because that, yeah, that doesn't make any sense if it's still safe in postmenopausal women.

Dr. Kelly Casperson: There was somebody at the FDA who was quoted as saying, what do we need a bunch of horny women walking around for? [00:47:00] Keep in mind, the FDA approved Viagra in 1998 and it was considered an essential. Advancement for men. 

Dr. Linda Bluestein: Even right away? 

Dr. Kelly Casperson: Bias is real, my friends. 

Dr. Linda Bluestein: Yeah. Wow. That's incredible. 

Dr. Kelly Casperson: 90 percent of men are heterosexual.

So who's taking care of who they're supposed to be sleeping with? 

Dr. Linda Bluestein: Right. And for women that are listening to this and thinking, okay, well, this is all great, but I can't, I have to stay within my insurance network. And like you said, maybe getting another opinion is a, is a really important thing. Do you have any tips for how they can talk to their doctor in a way that they're more likely to be listened to?

Absolutely. 

Dr. Kelly Casperson: Yeah, you can say you, you need to explain what bothers you and how severe it is. And I'm not, don't, don't misread me. I'm not telling you to be a drama queen, but if you, if you, if for example, I'm having hot flashes at night and it's bothersome, that's very different than my hot flashes at night are so common and so severe that I have [00:48:00] 18 pairs of pajamas that I have to change into all the time because I'm soaking through my other ones.

Those two stories could be the same story. But one's very clear how incredibly affecting of your life this is, right? And so many women are socialized to downplay. It's not that bad. Like, you're tough, right? Like, you can handle this. Like, you went to med school. You can handle these problems, right? Right?

Like, so you need to be clear. You're in that room to get your needs addressed. Be clear about how bothersome they are. If you say, I have pelvic pain, I have no idea what that means, right? Is it about like once a month you get a little twinge when you play pickleball too hard? Or do you think you're gonna have to quit your job and your partner's gonna leave you?

Right? Like explain your symptoms to people in ways that they understand how bothersome they are. [00:49:00] You don't have to be dramatic. You're not going to be dramatic. You're just going to be clear. And then because you've done your education, you can say, I have heard that pelvic floor physical therapy is really great.

Can I get a referral? Or, I found this pelvic floor physical therapist on ishwish. org, they're in my town, they take my insurance. You do the homework. You call them and see if they take your insurance. Doctors don't know that. It's just going to slow you down. You can do all of that research. So I've looked, they take my insurance, they're experts in pelvic pain, all I need is a referral.

Dr. Linda Bluestein: That makes sense. So we always end every episode with what I call a hypermobility hack. So for this population that has connective tissue disorders, they might have mast cell activation syndrome and or dysautonomia slash a subset of which is POTS. You've already given us a lot of hacks of course, but do you have any other like quick win for people?

Dr. Kelly Casperson: Oh, I mean, I would just say lubrication is everybody's friend and then have a good pelvic floor physical therapist. 

Dr. Linda Bluestein: [00:50:00] All right. Well, it's been so great chatting with you today. Before we go, I guess the last couple of things I'd like to know are if you're involved in any special projects, I know that your clinic is going to be opening before too long.

I'd love to know details about that. Who might be eligible to be a patient? Do they have to live in a certain state because we know medical licenses are state dependent or do they need to come visit you for their first appointment? Those kinds of things. Um, and any other things that you're, that you're up to that you want to share and where we can find you online.

Dr. Kelly Casperson: Yep. Um, so kellycaspersonmd. com is where my, that's my website. I like to hang out on Instagram at kellycaspersonmd. The podcast is You Are Not Broken. The book is You Are Not Broken. The clinic is opening in a couple of months. After I come back, I'm speaking at the Sydney Opera House in Sydney, Australia.

So I'm not opening my clinic before that happens. Um, and yes, you have to come and see me cause I only have a Washington state license and I'm not going to get other licenses cause there's like 7 million people here. So if you want to come and see me, fantastic. I do not take any insurance. [00:51:00] Because I listen to women and I can't do that.

I can't listen to women if I have to see 27 of them a day. So I will say, I will see just a few a day and then that costs extra. But I truly think that what Western medicine is lacking right now is for women to be seen, for women to be heard, and for women to be believed. And so that's what the clinic's being created for.

Dr. Linda Bluestein: Wonderful. Okay. Well, thank you so much. It was so great to finally meet you and to Chat with you and get this wonderful information to share with the listeners of this podcast. So thank you so much for taking the time I know you're really really busy And it's great to do this. Thanks for having me

I'm so excited that we got to chat about sex Two weeks in a row on the podcast, Dr. Casperson shared such great information with us, and I hope you enjoyed it. Thank you for listening to this week's episode of the Bendy Bodies with the Hypermobility MD [00:52:00] podcast. You can help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast.

This really helps support the show. If you'd like to dig deeper, you can meet with me one on one. Check out the available options on the services page of my website at hypermobilitymd. com. You can also find me, Dr. Linda Plewstein, on Facebook. Facebook, Instagram, TikTok, Twitter, and LinkedIn at hypermobilityMD.

You can find human content by producing team at human content pods on TikTok and Instagram. You can find full video episodes of every week on YouTube at bendybodiespodcast. To learn about the bendybodies program disclaimer and ethics policy, submission verification and licensing terms and HIPAA release terms, or to reach out with any questions, please visit bendybodiespodcast.

com. Bendybodies podcast is a human content production. Thank you so much for being here. so much for being a part of our community and we'll catch you next time on the bendy bodies podcast.[00:53:00] 

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