Testosterone is Essential for Women with Dr. Kelly Casperson

[00:41] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility MD. I 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. And 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 is changing that.
[01:13] Dr. Kelly Casperson is a board-certified urologic surgeon, renowned public speaker, 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 Shitting 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.
[01:50] 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. Here we go.
[02:28] I am so excited to chat today with Dr. Casperson. Last week I actually 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 early on when you talk about running into an OB-GYN friend at ISSWSH, a sexual medicine conference, and she was saying that she also did not receive training in sexual medicine, right? When you asked her why she was there.

[03:16] Dr. Kelly Casperson: Yep.

[03:16] Dr. Linda Bluestein: And I love how you said, well, then who is taking care of the people sleeping with the people I am giving Viagra to?

[03:23] Dr. Kelly Casperson: Yes. That's the big question.

[03:25] Dr. Linda Bluestein: Yeah, that's the big question. So let's talk about hormones first, because 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. As you discussed on a recent episode, we're kind of stuck with the choice of going to a regular GYN versus a hormone mill. One of your guests used that term, which I thought was really so accurate. And of course, you talk about how these are brain hormones and not sex hormones. So much advice is outdated, and we're trying to find this middle ground. How do you suggest people go about that? Because it's just so challenging.

[04:09] Dr. Kelly Casperson: Yeah, well, I think first they should get self-educated, whether that's reading, podcasts, however you like to learn, because in the traditional insurance-based system now, with a 10-minute doctor visit, you don't have time. That's not where education happens anymore. So you really do need to self-advocate and get over your fear of hormones before you go in, because that takes time. The fear of hormones is in the zeitgeist, it's in the ether, because of the WHI in 2002. Probably the most damaging thing we did to healthcare and to all humans in the past couple of decades was the dissemination of — I say "we," I was not involved. This was really media portraying a hormone that our body naturally makes as something that's dangerous and something that's trying to kill us.
[04:58] We still see that perpetuated. Many people — because we call breast cancer estrogen positive or progesterone positive — keep in mind we could call prostate cancer testosterone positive, but we don't. 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; it doesn't mean that the hormone caused the cancer. Many people don't understand that. And I like to describe hormones like food. Food doesn't cause monsters, but monsters eat food. So when you have a monster, you've got to get rid of the food. 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.
[05:43] So that's step one: 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 to do to your body than you.

[06:01] Dr. Linda Bluestein: Yeah. And so many things like UTIs — you talk a lot about vaginal estrogen and how it's not just useful for having intercourse, but it also reduces UTIs by like 50%, right?

[06:13] Dr. Kelly Casperson: A lot of urologists don't know that because the literature is published in the menopause journals, and besides me, not many urologists are reading the menopause journals. So vaginal estrogen 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 on 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%, and the overactive bladder medications don't do that.

[06:53] Dr. Linda Bluestein: Sure, sure. And you also talk about not waiting until you have really significant atrophy in the vagina. This podcast is geared towards people who have connective tissue disorders, so they're even more prone towards fragile tissues. So it's so important for people to have access to that kind of therapy. But what about systemic hormones? What should we know about systemic hormones and when they would be most appropriate? I understand we could talk about this for many, many hours, but just some general information that people might benefit from.

[07:34] Dr. Kelly Casperson: Yeah, I think there are just so many myths still. So what happened after the WHI is women were 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. And there are these words that people don't actually know what they mean. So it's easy to just break those down. Bioidentical just means the exact same thing that your body makes. Vitamin D, thyroid, insulin — those are all bioidentical. You're just replacing what your body had and lost. Versus something synthetic like an antidepressant, a statin, a blood pressure med. 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 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 what's FDA-approved and that insurance covers is somehow not as good as the compounded stuff. Compounded 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. People get led into thinking more expensive is better, but you can actually do this pretty darn cheap. I always say pay for your expert. Don't pay an arm and a leg for the hormones.

[09:14] Dr. Linda Bluestein: Yeah. And I think that's also really challenging because so many hormone mills are doing things like pellets, where you're not just paying for the expert, but you're paying a fortune for the therapy as well.

[09:26] Dr. Kelly Casperson: You are. And pellets are the highest dose. They also require 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 do better with higher hormones, but most people shouldn't start there. I always say you need to earn your pellet. Don't go from zero to Mount Everest. I actually did an Oprah Daily op-ed on pellets. If anybody wants to read it, go to Oprah Daily and just type testosterone into the search bar, and you'll get a nice pro-and-con discussion on that.

[10:02] Dr. Linda Bluestein: Wonderful. We will be sure to add a link to that in the show notes. 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 it in the first place.

[10:17] Dr. Kelly Casperson: Yeah, I think we're not taught that. I mean, I wasn't taught it in med school. Does your partner, the urologist, know that? Like, we weren't taught that.

[10:24] Dr. Linda Bluestein: Yeah, I think actually he only knew that after — I have actually seen Dr. Goldstein as a patient, and I think it was only after I saw him and we had those conversations that my husband came to understand it. Yeah, I didn't know that either. I'm an anesthesiologist, so it makes a little bit more sense that I didn't know. I didn't learn anything about sex in my training.

[10:48] Dr. Kelly Casperson: Yeah, right. Airway, breathing, circulation, sex.

[10:52] Dr. Linda Bluestein: Right, exactly.

[10:55] Dr. Kelly Casperson: I was well into my career when the whole testosterone conversation started, and I've kind of taken it on. Not that I'm 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. So a woman is 1/10 the dose — that's nothing. Women make 4 times the amount of testosterone as estrogen when they're cycling, not post-menopause. It's just 10 to 20 times less than what men make. So another way to think about it is: men make a ton of testosterone compared to women, but we make more testosterone than estrogen. And here we go around saying estrogen is our hormone. Well, in smaller amounts, truthfully.
The other issue 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. Insurance doesn't cover it when you don't have an FDA-approved product. So there are a lot of barriers. It's changing — I have that information, so I can tell people it's changing. But we'll see how fast that changes. I think once we get an FDA-approved product, it's really going to open up the conversation.

[12:20] Dr. Linda Bluestein: Well, it's fascinating too, because there must be some regulations around the labs. 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.

[12:34] Dr. Kelly Casperson: What?

[12:35] Dr. Linda Bluestein: Yeah.

[12:36] Dr. Kelly Casperson: Yeah.

[12:36] Dr. Linda Bluestein: All the rest of my labs showed up on the portal, but for testosterone — I forget what it actually said in the portal.

[12:42] Dr. Kelly Casperson: I'm curious why.
[12:42] The other thing to know about labs: women have to get the mass spectrometry lab, because if you just get your standard testosterone test — which is the lab made for men — that's the immunoassay. The immunoassay is unreliable for levels below 100. So you're getting a number that's pretty much meaningless because the lab isn't 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. At Quest, it'll say "male, female, child testosterone" — that's how you know it's the mass spec. And then the reference ranges are different between labs.

[12:42] Dr. Linda Bluestein: Right?

[12:43] Dr. Kelly Casperson: LabCorp is different than Quest. So people will be like, my doctor said my testosterone is normal, and they'll show it to me and it's 3. And I'm like, 3 is not normal. 3 is low. But that's normal within 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: 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. I know all the studies, so I know what physiologic levels look like, I know what the studies show for libido, I know how high people are. So I'm very comfortable saying there's more to the story than these labs show.
[14:10] And that's true even for free testosterone — looking at total free testosterone is probably worthless.

[14:16] Dr. Linda Bluestein: Really? So you're looking at total testosterone then?

[14:21] Dr. Kelly Casperson: Yep.

[14:22] Dr. Linda Bluestein: Okay, good to know.

[14:23] Dr. Kelly Casperson: You can use free testosterone if you're like, I don't feel where I should be and my testosterone number looks good. I always check a sex hormone binding globulin. You've got to know if that's high — you might have to push your testosterone dose up if you have high SHBG. But a lot of experts say we don't know what normal is for free testosterone, and we don't know that free testosterone is correlated with symptom improvement. So by and large, free testosterone kind of came in as the trendy thing, and it's kind of dying again.

[14:50] Dr. Linda Bluestein: That's so interesting, because it's very common for people with symptomatic joint hypermobility to be on birth control to try to regulate periods. So many people have really painful periods and a lot of problems with their menstrual cycles, so people get put on birth control, which then raises sex hormone binding globulin, correct?

[15:10] Dr. Kelly Casperson: Yep, and lowers testosterone.

[15:10] Dr. Linda Bluestein: And lowers testosterone — which we especially need with our hypermobile, unstable joints. We really need that testosterone to help us build muscle mass and protect our joints. But it sounds like we're caught in a bit of a cycle where our testosterone is lower. In terms of the labs, how do we interpret the testosterone level when sex hormone binding globulin is high?

[15:38] Dr. Kelly Casperson: You might just need more testosterone, because you've got some bound stuff. But again, remember, we're in our infancy in understanding this. And not to complicate it for people, but — because so many women are like, just give me the lab level I need to be at. And it's like, true experts know that what testosterone is doing in your brain is actually different than 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? There's the whole receptor question, which we can't study at all. So for people to lock in on it's got to be this number, this dose — that's oversimplifying a very complex and poorly understood system at this point.

[16:29] Dr. Linda Bluestein: And for women who are interested in pursuing testosterone therapy, are there certain contraindications we should be aware of?

[16:36] Dr. Kelly Casperson: If you already have high levels — a PCOS person, for example — that might not be a great candidate for testosterone. It's pretty rare overall. The guidelines say liver disease, but you'd have to have a strikingly bad liver. Transdermal doesn't get processed through your liver; a lot of that concern comes from old oral medications. So I don't fully agree with that contraindication. Also, in the guidelines, the source is not cited for that contraindication. So I take that one with a grain of salt.

[17:02] Dr. Linda Bluestein: So in terms of contraindications, there's really not a lot. Because there's also — you talk about this on your podcast — excess testosterone being converted into estrogen and then potentially raising the risk of breast cancer. I've actually heard this from other doctors. Is that true?

[17:21] Dr. Kelly Casperson: Is it true? Have we done studies?

[17:26] Dr. Linda Bluestein: Yeah, I don't think so — or have we?

[17:28] Dr. Kelly Casperson: There are multiple studies. So, you give a woman testosterone — does her estrogen go up? We have multiple studies on that. Let's think physiology. Women have 4 times the amount of testosterone as estrogen in their body naturally. So by definition, all their testosterone is not converting to estrogen, correct?

[17:30] Dr. Linda Bluestein: Yeah.

[17:51] Dr. Kelly Casperson: Okay, cool. So let's give her testosterone. Let's check her estrogen before and after. 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?

[18:15] Dr. Linda Bluestein: Definitely not.

[18:16] Dr. Kelly Casperson: No. And that's 10 times the dose. So when people say that, number one, they're uneducated about testosterone. Number two, they're using fear as a reason for women not to use testosterone.

[18:28] Dr. Linda Bluestein: And I've seen in my own clinical practice that trans men — actually their pain often goes down. And the reverse is often true: trans women, their pain and joint instability often goes up. So we know that.

Dr. Kelly Casperson: Fascinating.

[18:41] Dr. Linda Bluestein: So we know that these hormones are really, really important.

[18:46] Dr. Kelly Casperson: Super interesting. We need more data. And as the testosterone expert, I never want to sound like we have enough data. But we've got to use what we have to break all these myths. The orthopedic data looking at people — any gender — with low testosterone shows increased risk of needing joint replacements, increased risk of knee osteoarthritis. So there is data that these hormones are really important for pain, for joint function, for musculoskeletal health.

[19:24] Dr. Linda Bluestein: 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 really needs to be talked about more. So I'm so excited to chat with you. I just chatted with Dr. Goldstein, and I'm actually presenting at ISSWSH next month.

[19:40] Dr. Kelly Casperson: Oh, awesome.

[19:41] Dr. Linda Bluestein: Yeah, it's coming up fast —

[19:42] Dr. Kelly Casperson: Can you believe it's next month? You've had Andrew Goldstein on your podcast though, right? Because he's a big expert in hypermobility.

[19:51] Dr. Linda Bluestein: No, I have not. I would love to.

[19:53] Dr. Kelly Casperson: You need Andrew Goldstein. Yeah, okay.

[19:55] Dr. Linda Bluestein: I will definitely look into that for sure. There's a group on Facebook called Sextacular EDS Zebras, and they have over 8,000 members. 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. There are so many problems that people have, because they get this trifecta of 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 about feeling good in your body. Are there certain things that you think hypermobile people should know about sexual health, urologic function, anything specific to that population?

[20:49] Dr. Kelly Casperson: I think everybody needs a good pelvic floor PT.

[20:54] Dr. Linda Bluestein: Mm-hmm.

[20:59] Dr. Kelly Casperson: Have that person. Have that person when you're doing well, so you have that person when you're not doing well. Where are you weak? Where are you strong? Where are you guarding? We're all these imperfect, off-balance people all the time until something breaks. Physical therapists — who are hard to come by, they're not everywhere — are amazing. And whenever I give a talk about sex or whatever, the PTs always raise their hand and say, don't forget about the PTs. And I never forget about the PTs. They want to be seen, they want to be utilized, they know they're great tools in the toolbox.
[21:42] So if you haven't seen a good pelvic floor PT yet — they help with pain with sex, they help with bladder leakage, and we've got a much higher rate of prolapse in the population with connective tissue disorders. What can you do to stay strong?
And then I'd say: you don't need a second hit. Understand what perimenopause is, understand what menopause is. Vaginal estrogen is safe enough to be a preventative medication. Start thinking about systemic hormones and getting curious about at what point you might want to start. Remember, there's this big drama in the menopause world right now because some say only symptomatic people should use hormones. But osteoporosis is not symptomatic, and estrogen is FDA approved for the prevention of osteoporosis. So it's a very poor argument to restrict hormones only to symptomatic women.
[22:42] The other thing that happens is women go to the doctor and the doctor asks, "but is it bad enough?" Men never get asked that. A man comes in with low libido and erectile dysfunction — no urologist is ever like, is it bad enough? Men are never challenged once they're in the physician's office. That's part of the power of being a urologist: I take care of the guys, so I know how they're treated. Their problem is treated as real and deserving of treatment. And that's how I always think about women's issues — would we say that to a man?
Depending on your study, 20 to 40% of men will have low testosterone at some point. Most people don't outlive the function of their testicles, but some do, and there are metabolic and lifestyle reasons testosterone can go down. But when a guy comes in with low testosterone, we're never like, are you symptomatic enough, are you bothered enough by this? Low testosterone in men is associated with dementia, bone fracture, depression, metabolic syndrome, and diabetes. Nobody is going to force a guy to take testosterone, but they're going to have that conversation.

[23:54] Dr. Linda Bluestein: That's so interesting. And I know my husband — his specialty was prostate cancer, and he did a lot of robotic prostatectomy. So of course that's also on people's minds. Without digressing too much — if you take supplemental testosterone, does that increase your risk of prostate cancer?

[23:55] Dr. Kelly Casperson: No.

[24:19] Dr. Linda Bluestein: Does not, really?

[24:20] Dr. Kelly Casperson: End of conversation. That case has been closed for a long time.

[24:23] Dr. Linda Bluestein: Interesting. Okay, good to know.

[24:27] Dr. Kelly Casperson: All right, busted myths, my friend.

[24:28] Dr. Linda Bluestein: Yeah, I love it. Busting myths is a very, very important thing to do. Let's talk about the bladder, because bladder pain, urgency, frequency, and incontinence are all so common in people with connective tissue disorders. We also know that the bladder is lined with mast cells, so mast cell activation syndrome plays a role, connective tissue plays a role, and autonomic nervous system dysfunction like dysautonomia plays a role. How do you determine the cause of bladder problems and what you can do about them?

[24:57] 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 start? Oh, it started at 50 when your periods ended. The number of women who come in and say, I've been told I have interstitial cystitis — and I ask, do you want a chronic incurable disease? And they say no. And I say, why don't we just call it a sensitive bladder? Because a lot of them get better with vaginal estrogen. Instead, someone slapped this heavy brick of a backpack of chronic disease onto their list, and then the woman carries that label around. I see women who say, oh, I have interstitial cystitis, but it hasn't bothered me for 20 years. And I ask: is it quite possible you don't have interstitial cystitis?
[25:48] Interstitial cystitis is a diagnosis of exclusion. You want to make sure it's not cancer, not an infection, not hypertonic pelvic floor, not low hormones — all of these other things. Because the pelvis can't tell us; people pee frequently, people just think it's an infection. It can be lots of other things. So it's a good workup, but really listening to the woman matters.

[26:16] Dr. Linda Bluestein: Yeah, definitely. I see so many people with a diagnosis of interstitial cystitis. It's so, so common.

[26:22] Dr. Kelly Casperson: Most experts will agree they take the interstitial cystitis diagnosis away from people more often than they give it.

[26:29] Dr. Linda Bluestein: Really? Wow.

[26:31] Dr. Kelly Casperson: Wow.

[26:32] Dr. Linda Bluestein: So for bladder pain — besides vaginal estrogen, what are some other things you've found to be helpful?

[26:39] Dr. Kelly Casperson: First of all, you question whether it's actually bladder pain. Most women don't know the names of their anatomy — 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 you point to your urethra or your vulva, that is not bladder pain. If you point at your belly button, that's not bladder pain. The bladder gets blamed for so many "down there" issues. You need a good history and physical.
[27:17] Classic bladder pain is it hurts when the bladder is filling and it's relieved by voiding, because it's the stretch that hurts. Not always, but that's the classic symptom. So I'll ask women: do you have that specific symptom? Many say no. Many will say the vulva hurts, and they'll call it the bladder. Or it could be a psoas muscle issue and they'll call it the bladder. So my first job is always to question whether it's actually the bladder.
[27:42] The bladder is my favorite organ. It gets blamed for everything. Here's how I describe the bladder: the bladder is the kindergartner. When the kindergartner's acting up, is it really the kindergartner's fault, or is the home life bad?

[27:59] Dr. Linda Bluestein: Right.

[28:00] Dr. Kelly Casperson: 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.

[28:10] Dr. Linda Bluestein: Yeah, that makes a lot of sense. I did very recently interview a pelvic floor physical therapist who's also my own physical therapist, and I've had pelvic floor physical therapy numerous times. I have EDS actually, so that's how I got involved in doing all of this. And they work wonders for so many problems.

[28:29] Dr. Kelly Casperson: Aren't they amazing?

[28:29] Dr. Linda Bluestein: Yeah, they are amazing.

[28:29] Dr. Kelly Casperson: They don't want to be forgotten.

[28:33] Dr. Linda Bluestein: No, and they shouldn't be.

[28:34] Dr. Kelly Casperson: They're critical.

[28:34] Dr. Linda Bluestein: They're critically important.

[28:37] Dr. Kelly Casperson: I tell people that sex and a healthy pelvis is a three-legged stool. I'm only one of those legs. People come to me and think I'm going to solve all the problems, and I'm like, you need a sex therapist — usually 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 — that's the big myth people don't understand.
[29:03] And then you need me for the hormones, any sort of surgical problem. We can look in the bladder with a camera, we can do all of our stuff. And frankly, I do some of the best vulva exams. Sex therapists can't look at your vulva. Physical therapists can — the trained ones are actually pretty good. But somebody who truly understands what a pelvic exam is can say, oh, you've got lichen sclerosus, you've got severe atrophy, or things look really great but your right side of your pelvis is super tight. It's a three-legged stool. If you don't have any one leg, the stool falls down.

[29:41] Dr. Linda Bluestein: Yeah, that makes a lot of sense. What's the best place to find a good sex therapist? Do you have any suggestions?

[29:49] Dr. Kelly Casperson: AASECT. A-A-A-S-E-C-T.

[29:53] Dr. Linda Bluestein: We put the link in for our last episode, but we'll put the link in for this episode as well so people can find it.

[29:59] Dr. Kelly Casperson: You can also find them on ISSWSH. A sex therapist can be a member of ISSWSH as well. ISSWSH is really a sweet organization because the people there are all comfortable with sex. It's not just doctors — psychiatrists, psychologists, physical therapists, sex therapists, all those people. And they understand the role of hormones in a good sex life. So they're actually pretty darn good for hormones as well.

[30:23] Dr. Linda Bluestein: Wonderful. Okay, we're going to take a quick break and when we come back, we are going to talk about erectile dysfunction.
[31:26] Okay, we're back with Dr. Casperson, and I did want to ask you some questions about erectile dysfunction. A lot of my patients have dysautonomia — they might have POTS or another form of dysautonomia — and a lot of them have tethered cord, which is common with EDS and can contribute to erectile dysfunction as well as bladder problems. Have you seen this in your population at all?

[31:51] Dr. Kelly Casperson: Not as much. I don't have many male connective tissue disorder patients.

[31:56] Dr. Linda Bluestein: Okay. Do you see very many females with tethered cord or pelvic organ prolapse or anything like that?

[32:02] Dr. Kelly Casperson: Tons of prolapse.

[32:03] Dr. Linda Bluestein: Okay.

[32:04] Dr. Kelly Casperson: Less tethered cord.

[32:05] Dr. Linda Bluestein: And with the prolapse, is pelvic floor physical therapy often helpful? Of course, surgery is sometimes necessary, but what are your thoughts?

[32:14] Dr. Kelly Casperson: Pelvic floor therapy, always. It's always the right answer. And the concern with connective tissue disorders is, listen, your recurrence risk after surgery is higher because you just don't have that natural strength to sew things back together. This might be more consensus than absolute guideline, but in many cases they say to delay surgery until you're really ready for it, knowing you might need more than one surgery in your life. Let's keep you functional and preserve function — not that anybody jumps into surgery, but yours might not give you 10 years. So maybe consider the timing carefully.

[33:04] Dr. Linda Bluestein: Yeah, absolutely. I agree. And sometimes we can end up having surgeries that we regret.

[33:15] Dr. Kelly Casperson: People don't understand this: when you go to a surgeon, you'll get a surgical opinion. And people don't always realize I'm a surgeon. Then they don't understand why I can't solve all of their problems by myself. It's because there are other experts who need to be on your team, not just the surgeon.

[33:36] Dr. Linda Bluestein: Right. So you have built quite an empire between your book, your courses, your talks, memberships, podcasts — all in service of helping women understand and care for their bodies. And I think it's amazing how you've created this incredible community. People have told me about your videos and have sent me things. I'd love to be more like you when I grow up. I think you're such an inspiration. So I'd love to know if there are certain lessons you've learned along the way about helping people beyond the clinic setting. Do you have any secrets to your success?

[34:17] Dr. Kelly Casperson: You've got to get over fear. Get rid of fear. You can do anything. And it's a lot of mind work. Why are you doing it? Who do you want to serve? Why show up? Who do you want to talk to? 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 healthcare professional — or an expert in anything, even an accountant — if you're an expert in your field and you're a good communicator, you're unstoppable. Those are two incredibly valuable skills, and they rarely come in the same person. If you can be an expert and communicate well, you're unstoppable.

[35:03] Dr. Linda Bluestein: And I know that you're also — I don't know if this is fairly recent — but you're doing Instagram Lives while you're recording a podcast.

[35:10] Dr. Kelly Casperson: Yeah.

[35:11] Dr. Linda Bluestein: I was curious how that's working out. People seem to like it.

[35:15] Dr. Kelly Casperson: Nobody's complained so far. But I do a lot better in front of an audience. Talking to myself in my basement is kind of like, what the hell am I doing? So I just like having people there to interact with, and they throw me great questions that I can incorporate into the podcast.

[35:40] Dr. Linda Bluestein: Yeah, it comes through. It really comes through that you love engaging.

[35:45] Dr. Kelly Casperson: The energy.

[35:46] Dr. Linda Bluestein: Yeah, the energy. And clearly your audience loves you. It's really obvious that you love what you're doing. And I totally agree with you about the confidence thing — that's something I'm working on. It's hard.

[36:02] Dr. Kelly Casperson: But listen, at the end of the day, 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 — there's no round 2, as far as we know. And that really helps me get over any fear. We are all very meaningful and very meaningless at the same time. And in the meantime, I save lives. I save marriages. I've prevented suicides. I've cured pain. I've ended one marriage, which I laugh about because that was actually a man who said, you made me realize that I'm worthy of love and I can no longer be in this relationship. So I always joke: the marriages I've saved and the one I've ended — but it was probably good. Between birth and death, do some badass things.

[37:06] Dr. Linda Bluestein: That makes sense. Okay, so we got some questions from listeners that I'd like to do kind of rapid fire. Some of them might just have a simple yes or no answer, and some of these we may have already covered. So we'll just get through some of these if we can. The first one — the person says, I have interstitial cystitis — which of course we've clarified they may or may not have.

[37:27] Dr. Kelly Casperson: Right, I'm already suspect. We'll go with it though.

[37:27] Dr. Linda Bluestein: Right. And pelvic floor dysfunction — which I do want to clarify, because after I released the episode on pelvic floor physical therapy, a number of people seemed to think Kegels are all that pelvic floor PT involves.

[37:47] Dr. Kelly Casperson: I'm nodding in agreement.

[37:48] Dr. Linda Bluestein: Yes. And people watching on YouTube can see the nodding, but not the people listening. Okay, so this person says sex feels like I'm being cut with razor blades. Is there anything that can help?

[38:03] Dr. Kelly Casperson: Jesus, I hope so. Stop.

[38:08] Dr. Linda Bluestein: Well, it goes back to your point — if it's truly the bladder, then yes, that could be painful with sex. But now that you've explained this, it sounds like it might be more—

[38:18] Dr. Kelly Casperson: Razor blades. Do you understand now why I say you listen to the woman? She will tell you what's happening. You just have to listen. Whoever saw her and didn't hear "razor blades" and then told her she had interstitial cystitis — no.
[38:32] Razor blades stereotypically is vulva entrance pain. Bladder pain is more like deeper penetration actually hitting the bladder — on a pelvic exam it's like, oh, that. That tends to be the more bladder discomfort with intimacy. Razor blades is usually entrance pain. So I'm thinking genital 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? What does the pelvic floor physical therapist think? Can she reproduce it on exam? Does she have vulvodynia? Is she 23 and her vulva looks great but you can't touch it with a Q-tip? Really getting people to understand that this requires an exam and someone who can hear your story and break it all apart.
[39:31] I don't say all that to overwhelm people. I say it to convey that experts know it's not just one thing. And I would say you're perpetuating a pain cycle if you're putting up with razor blades. You will never desire sex that hurts. Women come in and say, I have pain with sex and low desire. And I say, no — you have one thing: pain with sex. Nobody desires that. You fix the sex pain, you have better sex. And in the meantime, stay intimate and connected but don't do the razor-blade things. The very common pattern is it's painful, so you do nothing. And that's a big 0-to-60, and intimacy and connection dwindles. You can stay connected and intimate — just don't do the razor-blade things.

[40:28] Dr. Linda Bluestein: Okay. You mentioned earlier lichen sclerosus and lichen planus — somebody asked how can I tell the difference, and what can I do if standard steroids don't work?

[40:43] Dr. Kelly Casperson: See an expert, get a biopsy, make sure you have the right diagnosis.

[40:49] Dr. Linda Bluestein: Is that something that's misdiagnosed fairly frequently?

[40:52] Dr. Kelly Casperson: Oh yeah.

[40:53] Dr. Linda Bluestein: Okay.

[40:55] Dr. Kelly Casperson: How many people actually learn how to examine a vulva in medical school? Not very many. And of all the people who aren't doctors, do you think their training was any better? If they went to an ISSWSH fall course, they get trained how to do vulva exams — it's exceptional. But most people don't know. The number of women who come see me who say, four gynecologists have told me my exam is normal — and their exam is not normal. I mean, some of them, you can't even identify the clitoris.

[41:24] Dr. Linda Bluestein: Did you just say you can't even find the clitoris?

[41:26] Dr. Kelly Casperson: Yeah, because it's atrophic and phimotic — you can't see it.

[41:28] Dr. Linda Bluestein: Oh, interesting. Okay.

[41:33] Dr. Kelly Casperson: They have a clitoris. You know what I'm saying.

[41:35] Dr. Linda Bluestein: 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 I feel like he has no empathy or understanding of my situation.

[41:55] 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 him sex, that's a big red flag. Many people don't want to be with someone like that. Communication is key. And if you don't have the tools to communicate between the two of you, seek professional help. Therapists are amazing.

[42:23] Dr. Linda Bluestein: Yeah, they can be very helpful. What about 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.

[42:36] Dr. Kelly Casperson: You've got to work on pleasure. What feels good? Double down on what feels good. And you can see a sex medicine doctor — there are off-label options. There's no on-label orgasm medication. But think: what can I change? What can I tweak? How are your hormones? Are you using vaginal estrogen? Have you used a vibrator? Do you think sex is just putting something in your vagina? There's so much to cover, and it really starts with getting an education. Because 100% of people — unless they had an amazing mom — did not get sex ed. They got a disease-and-pregnancy-prevention plan. They did not get sex ed. People are like, oh, I have POTS and I'm on a beta blocker, that's just how it is. But you're potentially missing 90% of all the other things that you can improve on.

[43:29] Dr. Linda Bluestein: And speaking of, could you talk a little bit about the drug Addyi, and/or that other class of medications designed to help with desire in women? That's what it's for, right?

[43:42] Dr. Kelly Casperson: Yeah, so Addyi is the brand name; the generic is flibanserin, and that's once-daily dosing taken at night. The other one is an injectable on-demand called Vyleesi; the generic is bremelanotide. They've both been FDA approved for low desire in premenopausal women for years, and they're not widely utilized for two reasons. Number one, nobody knows about them. Number two, insurance doesn't cover them because insurance says sexual health isn't health.
[44:13] Both medications work. They're both very safe. All medications have side effects — it irks me when people ask, is it safe? Cars aren't safe, but we use them every day. Relatively speaking, these medications are safe for most people on most days. For Addyi, the more common side effects are slight weight loss and better sleep — some would argue those are not that bad. Don't drink more than 2 glasses of alcohol in a night when you take Addyi, or skip a dose, just because it can lower blood pressure. But the big myth is that you can't drink at all.
Both medications work by increasing dopamine. Dopamine is the neurotransmitter that makes you want to seek something out — I want to go get some Häagen-Dazs mint chip, I want to scroll on my phone, I want to pursue sexual activity. That is the dopamine pathway. So both medications work by increasing dopamine and increasing your interest in sex. And hormones also increase the dopamine pathway, which is why both estrogen and testosterone are known to increase desire.

[45:52] Dr. Linda Bluestein: And those are only approved in premenopausal women.

[46:00] Dr. Kelly Casperson: That's true. Those medications do work in postmenopausal women. And I tell people — I mean, does your insurance company or the pharmacy actually come to your house and see if you have tampons in the closet? People get so hung up on that. Most people don't know if they're in menopause or not if they're like 52 and had a hysterectomy. We have data that it works in postmenopausal women. Addyi is approved in postmenopausal women in Canada. So the drug companies aren't saying it didn't work in that population — it does. Postmenopausal women have dopamine pathways too. The FDA put an artificial line in the sand.

[46:41] Dr. Linda Bluestein: Really? So it's not that they're unsafe in postmenopausal women?

[46:44] Dr. Kelly Casperson: Correct. It's that the FDA believes there's a big difference between postmenopausal and premenopausal women. And remember, the definition of menopause is arbitrary and made up. A man said it's 12 months after your last period. Why not 6 months? Why not 18 months? Why not 12 months and a day? At the end of the day, the definition of menopause is arbitrary.

[47:08] Dr. Linda Bluestein: And it sounds like the FDA thinks it's not important for women to have sex or desire sex, because it doesn't make any sense if it's still safe in postmenopausal women.

[47:17] 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? Keep in mind, the FDA approved Viagra in 1998, and it was considered an essential advancement for men right away. Bias is real, my friends.

[47:34] Dr. Linda Bluestein: Wow, that's incredible.

[47:36] Dr. Kelly Casperson: 90% of men are heterosexual, so who's taking care of the people they're supposed to be sleeping with?

[47:43] Dr. Linda Bluestein: Right. And for women who are listening to this and thinking, okay, this is all great, but I have to stay within my insurance network — how can they talk to their doctor in a way that they're more likely to be heard?

[48:03] Dr. Kelly Casperson: You need to explain what bothers you and how severe it is. And I'm not telling you to be a drama queen. But for example, "I'm having hot flashes at night and it's bothersome" is very different from "my hot flashes at night are so frequent and so severe that I have 18 pairs of pajamas that I have to change into all night because I'm soaking through them." Those two stories could be the same story, but one makes it very clear how incredibly this is affecting your life. So many women are socialized to downplay. It's not that bad. You're tough. You went to med school, you can handle these problems. But you're in that room to get your needs addressed. Be clear about how bothersome your symptoms are.
[48:56] If you say "I have pelvic pain," I have no idea what that means. Does it bother you once a month when you play pickleball too hard? Or do you think you're going to have to quit your job and your partner's going to leave you? Explain your symptoms in ways that convey how bothersome they are. You don't have to be dramatic. You just have to be clear.
[49:28] And because you've done your education, you can say, I have heard that pelvic floor physical therapy is really helpful. Can I get a referral? Or, I found this pelvic floor physical therapist on isswsh.org. They're in my town. They take my insurance. Do the homework. Call them and see if they take your insurance. Doctors don't know that, and it'll just slow you down. You can do all of that research yourself. So: I've looked, they take my insurance, they're experts in pelvic pain, all I need is a referral. Thank you.

[49:58] Dr. Linda Bluestein: That makes sense. We always end every episode with what I call a hypermobility hack. For this population that has connective tissue disorders, they might have mast cell activation syndrome and/or dysautonomia, including POTS. You've already given us a lot of hacks, but do you have any other quick win for people?

[50:18] Dr. Kelly Casperson: Lubrication is everybody's friend. And have a good pelvic floor physical therapist.

[50:23] Dr. Linda Bluestein: All right, it's been so great chatting with you today. Before we go, I'd love to know if you're involved in any special projects. I know your clinic is going to be opening before too long — who might be eligible to be a patient? Do they have to live in a certain state, or do they need to come visit you for their first appointment? And where can we find you online?

[50:49] Dr. Kelly Casperson: So kellycaspersonmd.com is my website. I hang out on Instagram at @kellycaspersonmd. The podcast is You Are Not Broken. The book is You Are Not Broken. The clinic is opening a couple of months after I get back from speaking at the Sydney Opera House in Sydney, Australia — so I'm not opening the clinic before that happens. And yes, you do have to come see me in person because I only have a Washington State license. I'm not going to get other licenses — there are about 7 million people here, so if you want to come see me, fantastic. I do not take insurance because I listen to women, and I can't do that if I have to see 27 of them a day. I'll see just a few a day, and that costs extra. But I truly believe what Western medicine is lacking right now is for women to be seen, heard, and believed. And that's what the clinic is being created for.

[51:48] Dr. Linda Bluestein: Wonderful. 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. Thank you so much for taking the time. I know you're really, really busy, and it was great to do this.

[52:05] Dr. Kelly Casperson: Thanks for having me.

[52:09] Dr. Linda Bluestein: I am 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 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 Bluestein, on Facebook, Instagram, TikTok, Twitter, and LinkedIn at hypermobilitymd. You can find Human Content — my producing team — at humancontentpods on TikTok and Instagram. You can find full video episodes up every week on YouTube at Bendy Bodies Podcast. To learn about the Bendy Bodies Program disclaimer and ethics policy, submission verification and licensing terms, and HIPAA release terms, or to reach out with any questions, please visit bendybodespodcast.com. Bendy Bodies Podcast is a Human Content production. Thank you so much for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.