Tight Muscles, Loose Joints, Pelvic Pain: The Hypermobility Paradox with Dr. Brooke Winder

[00:25] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility MD. A Mayo Clinic-trained expert in Ehlers-Danlos syndromes dedicated to helping you navigate joint hypermobility and live your best life. I am so excited to have Dr. Brooke Winder on the show today. Dr. Winder and I have presented together at multiple conferences and we've gotten to hang out and just chat about all things pelvic floor, joint hypermobility, high-level performing athletes, and everything in between.

Dr. Brooke Winder is a pelvic health physical therapist and dance science expert who helps performers optimize movement, manage pain, and navigate hypermobility. She serves patients through her clinical practice while teaching at California State University, Long Beach, and is widely published and sought after for her work at the intersection of pelvic health and performance.

This conversation today is so important because joint hypermobility, pelvic health, and sexual health are so interconnected. 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.

I'm so excited to be here with Dr. Brooke Winder. Dr. Winder and I have had the great pleasure of presenting together a few times and working on some projects together. So it's high time that we had you on the show.

[02:32] Dr. Brooke Winder: Wonderful. Thanks so much for having me. I'm really excited to be here.

[02:35] Dr. Linda Bluestein: Good, good. Well, of course, you're a pelvic floor physical therapist, you're also a professor, you work a lot with dancers, you do so many different things. We're going to talk about all these different fabulous, interconnected, interwoven topics. But let's start out by talking about how you started noticing these patterns of pelvic floor dysfunction in dancers, because of course we see that in hypermobile people, but you started noticing this in dancers also.

[03:03] Dr. Brooke Winder: Yes. Part of it was actually my own experience when I was young. I grew up dancing, but prior to really picking dance as my activity, I was a competitive gymnast. It was actually when I was doing both dance and gymnastics in my early adolescence, kind of through mid-adolescence, I noticed in particular that I would leak sometimes. I would leak urine. I never told anybody because I found it really embarrassing and I thought I had to be the only person in the world who was experiencing this at my age as a teenager. I never really understood why that happened. It didn't really have a particular pattern to it.

Then it got better as I got older and finished through puberty. I wasn't doing gymnastics anymore. So it was something that really wasn't on the forefront of my mind and seemed to resolve.

But then as I started my physical therapy career and I started working with pelvic floor PTs — because I really started out very much on the ortho side of things — I saw a lot of people, including dancers and other performers, who had low back and hip issues. And then I really realized that there was this whole area in between, the pelvic floor region, where it was very common for people to have symptoms. And the more dancers I talked to, I realized, oh my gosh, I was not the only one going through all of this.

So that really struck my interest once I started working with pelvic floor PTs. And then I decided to get trained in assessing the pelvic floor as well as working with orthopedic conditions.

[04:50] Dr. Linda Bluestein: I think it's so terrific what you're doing. And for all the pelvic floor physical therapists out there, I just want to say thank you, thank you, thank you. As I'm married to a urologist, and even though he's operated in that part of the body — in the pelvis, in the male pelvis — I think most physicians do not understand the pelvic floor at all. So God bless all of you pelvic floor physical therapists out there, because we need you so desperately. And we know that hypermobility also impacts the pelvic floor. So tell us about that.

[05:24] Dr. Brooke Winder: As someone who works with dancers, and I also work with aerialists who work in the circus world, I work with a lot of hypermobile folks. When we think about that hypermobility-pelvic floor connection, generally there's just a higher prevalence of pelvic floor symptoms in people who are hypermobile.

Typical symptoms of pelvic floor dysfunction can be things like leaking urine or incontinence, pelvic pain — and that can include lots of different types of pain that we can talk about, including genital pain, pain with sex, painful menstruation — as well as symptoms of pelvic organ prolapse, pelvic pressure, or having to urinate really frequently with a lot of urgency.

So those types of symptoms, if someone's hypermobile — particularly if it's a genetic hypermobility issue affecting all of their connective tissues — they do have a higher prevalence of these experiences. And there are lots of reasons we think that's happening, related to the sequelae that could be associated with hypermobility, as well as from a biomechanical standpoint. Potentially, people who have less passive stability in their connective tissues may have muscles that need to be working harder, more frequently, or more consistently to help the body feel stable and perform high-level activities. And so that is one of many reasons why there could be more issues along the pelvic floor.

[07:13] Dr. Linda Bluestein: So if their ligaments are not able to kind of hold them together — ligaments, which connect bone to bone — then maybe the muscles are getting hyperactive in order to try to hold everything together.

[07:29] Dr. Brooke Winder: Yeah. I think we continue to need more research to really help us demonstrate this. But as an example, let's say you have more mobility available in the sacroiliac joint, or more mobility available around your pubic symphysis or on your pubic bone, or just across the pelvis, or even at the hip — because it's so nearby and has so many fascial connections. Then it would make sense that the demand on your muscles is ramped up a little bit. And so the pelvic floor muscles could be having more difficulty relaxing, or maybe they're getting fatigued, or just having to work harder or hold more tension in order to compensate and help with the stability of the surrounding joints.

[08:19] Dr. Linda Bluestein: So does that explain why people can be strong and high functioning, but also have pelvic floor dysfunction?

[08:25] Dr. Brooke Winder: Yes. It's one of the reasons that I think it can confuse someone who is a really high-functioning athlete — like the dancers I work with, where they're strong, they move all the time, their hips are strong, their body is really well conditioned overall. And so it can feel really confusing if they're experiencing something like leaking, because I think we tend to understand that as a weakness issue: if I'm leaking, my pelvic floor has somehow become weak.

We see these issues in hypermobile people, in dancers, and in lots of high-level athletes and performers — not just dancers. We see these issues even before there might be more of a risk of the pelvic floor becoming strained or having trauma to the pelvic floor, like with pregnancy and birth. So even people who have never been pregnant, never had a baby, can have these issues as high-level athletes.

So the potential that maybe it's a tension issue or a challenge with relaxation can be some reasoning why higher-level athletes might have this going on. And then there are a lot of other factors in terms of their load and demand — just repetitive impact can be a factor, as well as nutritional issues in terms of fueling that could also be overlaying with that.

[09:57] Dr. Linda Bluestein: That's such a paradox — that they can have lax connective tissues but have this increased muscle tension. And I totally agree with you that most of us, when we think about urinary leakage, we think the pelvic floor is weak.

[10:09] Dr. Brooke Winder: Totally. And it's not always the case. Sometimes it's a coordination issue or a tension issue.

[43:00] Dr. Linda Bluestein: And we're going to talk about Kegels — is that how you pronounce it? Kegels?

[43:06] Dr. Brooke Winder: We're going to talk about Kegels. Yeah.

[43:06] Dr. Linda Bluestein: We're going to talk about that later because I feel like so many people think pelvic floor equals Kegels. And it's like, no, there's so much more to it than that. We're definitely going to talk about that later. So why do you think hypermobility issues are so often missed in both dancers and non-dancers?

Dr. Brooke Winder: I think hypermobility in general is still something that's not widely understood — hence why you have this podcast. A lot of people who have hypermobility and have all sorts of symptoms that aren't just about having a bigger range of motion at their joints — they've got issues affecting them throughout all of their body systems. If it's not really well understood, they might be going to different doctors, different physical therapists, different healthcare practitioners for all of these different issues without realizing that they might be connected. So I think it can easily be missed in that sense.

And then for our dancer and performing artist population, it's so common to be bendier. That's part of what our sport demands in dance — big ranges of motion throughout any type of dance genre you train in, from ballet to breaking to contemporary dance. There's so much demand for high mobility that I think a lot of people who end up in dance and enjoy it can move into those ranges easily. And so I think because it's so common, we see it all the time, it's hard to recognize that yes, that can be an asset for you, but that person who's working at this really high level and doing these amazing things and can move through all this range of motion might also really be needing a lot of support in other ways — with symptoms they're managing and how they're approaching their craft. It's very hard to notice when it's just such a common thing.

Dr. Linda Bluestein: And also comparison is so common, right? Jennifer Milner, who of course you know very well, she and I interviewed Skyler Brandt, who's a principal dancer with ABT. And she's talking about how she's not hypermobile — well, maybe relative to Chloe Misseldine or some of the other people in the company, maybe she's not, but she still has more range of motion than most people. So they're comparing themselves to each other, because of course that's who you're looking at all day, every day. You don't really know what quote-normal people look like. So I think that's the other challenge that dancers have at that elite level — the bar has just changed dramatically for them.

Dr. Brooke Winder: Yeah. Especially as the years go by, it just keeps pushing the envelope. And I see the same with some of the aerialists I work with too, where a lot of times they're saying, I'm just not flexible enough, because they may be working with people who are a lot more mobile than they are. But in comparison to the general population, they do have high mobility.

Dr. Linda Bluestein: Yeah, exactly. Okay. So let's talk a little bit about your research. You did some very interesting research on dancers and urinary leakage, and I don't know if you covered pelvic pain at all in there — what were some of the key findings?

Dr. Brooke Winder: So my colleagues Carrie Lindgren and Amanda Blackman and I did a study a couple years ago, and we looked at a little over 200 professional female dancers. Their average age was mid-20s, with an age range of 18 to 41, but most of them were mid-20s. A majority of them had never been pregnant or had a baby before. And around 34% of them said that they experienced urinary incontinence. A lot of times it was on the mild to moderate level of symptoms for them, but that's over a third. Around a third.

Dr. Linda Bluestein: Yeah.

Dr. Brooke Winder: Which is a pretty significant finding. And it's important to position that in relationship to other high-level, professional-level, or elite-level athletes — it actually aligns a lot with what's been found in other sports with female athletes, that these really high-level athletes, at least around a third of them, sometimes more, experience leakage.

Our main focus of that study was on incontinence, but we did ask other questions about things like back pain and irregular menstruation — which can be an overlaying factor. The only pelvic pain question we asked was an important one: whether or not they'd had a history of painful intercourse, and around 40% or so had reported an experience of pain with sex. So a huge number. We couldn't really extrapolate more on that because we didn't have a lot of follow-up questions, but that is something I think is definitely important to pursue. There are not enough studies on pelvic pain in athletic populations at all, but the few that are out there, on female athletes, kind of align with that as well — that pain with sex is a fairly common experience.

I also worked with Emily Sherb and Heather Heineman on a study on female aerialists in circus. We had over 400 aerialists, both recreational and professional, respond to our survey — I think we had 452 female aerialists — and over 40% of them reported leakage. We did have a higher percentage of those performers who had been pregnant or given birth, and the leakage was definitely associated with things like pregnancy and history of birth. But there was also a correlation found between those who said they were leaking and those who'd had some type of fall onto the tailbone or some type of fall associated with training. We have theories on why that might be connected.

So, significant numbers also in our circus population, and also a very common experience of pain with sex.

Dr. Linda Bluestein: I remember seeing a study looking at rhythmic gymnasts, and those athletes were quite young and they reported quite high numbers as well. I remember being very surprised by that.

Dr. Brooke Winder: Yeah. We definitely have some data that shows high numbers in rhythmic and artistic gymnasts, and cheer and cheerleaders — so our ground tumbling folks. And a lot of that was in the adolescent age group. So this is something that's potentially starting earlier than we think.

I'm currently working with a couple of colleagues to gather information about pelvic floor symptoms in adolescent dancers, but we're still in the data collection phase. We'll see what we find. We're very curious about whether we see the same thing in the dance population at those young ages, like what's been seen in rhythmic gymnastics.

Dr. Linda Bluestein: Have you identified other risk factors besides the fact that they're a dancer or a gymnast? Did you associate that with other risk factors when you were looking at that?

Dr. Brooke Winder: We did look at some risk factors in our dancer study. It was a survey study, so there were some limitations in what we could test for. We suspect that hypermobility is a factor, but that was really not something we could assess through a survey. I definitely think that's something waranting further exploration in both the dance and the circus population.

In both survey studies, we did ask about irregular menstruation. Part of that was actually taken from questions in the LEAF-Q to look at energy availability and relative energy deficiency in sport — because there is research connecting low energy availability and fueling issues with an increased chance of pelvic floor dysfunction for athletes. So we think that might also be an overlaying factor. In fact, the International Olympic Committee, I think it was 2023, actually included incontinence as a health consequence of RED-S. So that's kind of the next exploration.

We also know that athletes who do repetitive impact activities show a correlation, and certainly dancers do. Aerialists do too, but they're in the air, so the impact is not the same as ground impact. And there are some sports researchers right now who have studies out trying to collect data to create more of a risk profile for the athletic population, including questions relevant to dancers. I'm interested to see what they find.

Dr. Linda Bluestein: Do you think anyone has proposed possible mechanisms for RED-S contributing to incontinence? I'm trying to think of what the possible connection is there.

Dr. Brooke Winder: Right now it's somewhat still in the haven't-proved-it phase, but when we think about the consequences of RED-S — particularly on skeletal muscle — if low fueling is present, that can reduce the strength capabilities of any skeletal muscle if it's not appropriately fueled, and it can cause early fatigue. The pelvic floor muscles are skeletal muscles, so if they're underfueled, they're subject to the same consequences.

Other things like hormonal states are probably a factor as well. If someone is in that prolonged low-fueling state and they're a female athlete, that low estrogen state — which can be induced if they're not getting their period or they're having irregular periods, which is not uncommon in the dance population — can affect the continence mechanism and potentially also affect muscle capability.

And the other reason, which could be magnified in people who are hypermobile, is that with low fueling there might be more constipation, and constipation tends to exacerbate leakage or urinary urgency. For hypermobile folks who might already have something like slow motility or GI issues, a lot of people with hypermobility have so many gut issues that they're dealing with. They may feel like they are on a very restricted eating pattern because everything really triggers them. Maybe they haven't gotten a handle on how to help their GI system. And so for an athlete, that has the potential to lead them to be underfueled as they're trying to navigate their GI issues. And then that underfueling could further slow down their GI system or create GI discomfort on top of what they already have.

Dr. Linda Bluestein: Oh, that's so important. Constipation, I feel, is so common. And GI symptoms, like you said, are so, so common in the people that I see. And I see a ton of dancers, but also a ton of non-dancers. That is such a problematic symptom. And low back pain, of course, is also problematic — so many people with pelvic pain struggling with this.

I had a couple of follow-up questions on incontinence before we move on. First of all, what's the background percentage you would expect in the general population — for frame of reference? And then the other question is, how did you define incontinence?

Dr. Brooke Winder: I hope I get this right, but I think some systematic reviews have shown the general population is maybe around a quarter of the female population. So athletes sit in some senses higher. But I think it very much depends on the study, because in the general population, if you compare people who'd never been pregnant or had a baby to people who have, the rates are probably a little bit higher because birth — especially vaginal birth — is a risk factor for increasing your likelihood of incontinence, and also age, peri- and post-menopause.

I think some studies have shown about a quarter in the general population. So there is thought that female athletes might actually be at a higher risk — there are some studies that have shown a one to two times higher risk of incontinence in high-level athletes compared to the general population. But again, I think it depends which studies you're looking at. So it's an interesting question: why are these really highly conditioned folks experiencing these types of symptoms?

And I think you had another question—

[51:52] Dr. Linda Bluestein: How you defined incontinence.

Dr. Brooke Winder: In both of those studies — on dancers and on aerialists — we used the ICIQ-UI Short Form. It's a standardized, validated questionnaire to look at incontinence. We selected that because prior athlete studies on female athletes and incontinence had used it.

One of the questions basically asks when leaking happens, and the person filling out the questionnaire could say never, or they could say sometimes, and then start to list when that happens. Essentially, if they reported any kind of leaking in response to those questions, we stratified them into leaks and does not leak. We further used the ICIQ-UI Short Form questions to determine whether it was stress incontinence — if you leak when you're coughing, sneezing, or exercising — or urge incontinence, where you feel a really strong urge to go and then can't make it to the bathroom.

It was much more common for our dancers, and similarly for our circus artists, to have stress incontinence. But in our dancer study, that standard questionnaire doesn't ask specifically for athletes how leaking is affecting their sport. So when we did the circus study, we did ask questions about how leakage affected performance or training for our aerialists to get a little bit more information. There are certainly lots of other validated questionnaires out there, and I think some of the newer studies on athletes might start to explore some others, like the Queensland.

Dr. Linda Bluestein: As you're talking about that, I'm also thinking about — and I should have confirmed this with my husband or looked it up myself before we started this conversation, but I didn't — I think there's some data showing that teachers and nurses also have high rates of incontinence. I think what my husband had said is because they're holding it: they're on their feet all day and not able to just go to the bathroom whenever they want. And of course, anesthesiologists also definitely fall into that category. So I wonder if with dancers, if they're in multi-hour-long rehearsals, and athletes too — maybe once you have all your equipment on — there are probably some other factors at play as well.

Dr. Brooke Winder: Oh, sure. Yeah. And thinking about that makes me also think about the high-pressure performance environment. You're talking about your husband's job — there's a high-pressure performance environment for our dancers, for aerialists, for other athletes. Not only might they be on a timing they can't control in terms of their bladder habits, but the pelvic floor region and our signaling system for the bladder is so dependent on our autonomic nervous system function.

I think anyone can probably understand that if you are a performer — especially in concert dance — and they say places and all of a sudden you're like, oh, I have to pee, that's a good example of how interconnected that bladder signaling mechanism is with our nervous system. So if you're in these high-stress, high-pressure environments that a lot of dancers are in, I also wonder how that impacts that signaling system for the bladder. And really, for any sport.

Dr. Linda Bluestein: Definitely. I'm glad you brought that up because a lot of people who listen to this podcast — we do talk a lot about autonomic dysfunction — so there are a lot of people that have autonomic dysfunction, and that could play a role as well. It's so funny that you gave that example, because I remember sitting in a lecture with my urologist husband about bladder dysfunction, and I just suddenly felt like I had to pee. I was like, feeling all these sensations I normally don't feel — you normally don't feel your bladder at all. So I think that's a very good point.

Dr. Brooke Winder: Yeah.

Dr. Linda Bluestein: Okay, so let's move on and talk a little bit about the core before we take a break. I feel like the messaging around core engagement — what we're taught about that — maybe we're getting some messages that are not super helpful. What should we know about that?

Dr. Brooke Winder: Oh, I have lots of thoughts on it because I work with so many dancers. I also work with— I'm Pilates certified. I work with people that have trained a lot in the Pilates world, which is a lot of performers. As well as I see it a little bit in aerial work too.

But since dance is kind of that center, I see so many dancers who are taught that engaging the core, or at least the impression that they seem to get when they're training, is that engaging the core is about pulling up and in, in their belly region, and that that should be happening even if they're just standing there. And sometimes I think this also is drawn from how picky we can be in dance, maybe to a fault, about people's alignment, or how people maybe bring those alignment stories with them. I have dancers say, "Well, I've been told that I arch my back," or "I've been told that I tuck under. So I'm trying to correct it all the time." And I'm like, how many years ago were you told that? And they're like, well, probably when I was 8 — and they're 25 now. Well, you're probably fine, number one. And also you're just standing there. You probably don't need that high level of contraction just to hold your body up.

I think that pattern can then, particularly with performing artists — and a lot of athletes too — can be really high achieving. So if you have the impression that you should hold your core in, you're gonna do it 150%. To make sure not to let it go. I still have dancers that are trained with cues like, "Hold in your lunch," which has also got its own — I take issue with that.

Dr. Linda Bluestein: Oh no. Yeah.

Dr. Brooke Winder: The belly doesn't always have to be pulled in. But I think what can then happen is when someone's really clenching their abdominal wall and is not taught that that can have some play to it — that during harder things, you're gonna lift someone or you're gonna do something more challenging and you need to stabilize your spine, those muscles should naturally tense. But with lower level activities, you should be able to really breathe through it.

So sometimes I think it restricts breathing, because if you're really squeezing in, then you're kind of holding your diaphragm in place. The diaphragm works so much with the pelvic floor that you're kind of missing the opportunity to get that cue of the pelvic floor lengthening. We also know that when people contract their abdominal wall, it usually co-contracts with the pelvic floor. Which can be a really great thing for stability. But if the pelvic floor is maybe taught to know how to really pull up and in, but you just don't practice as much of the eccentric or the lengthening or the relaxation, sometimes that can drive things like pelvic pain or urgency in particular, even make leaking worse. Because it can mess with that coordination function of that system.

So I spend a lot of time telling dancers that it's okay to breathe into their belly sometimes, even while they're dancing — because for them that feels ridiculous, the ones that feel like they're really good at pulling in — just so that they can get used to a different strategy.

Dr. Linda Bluestein: We are gonna take a quick break and when we come back, we're gonna talk more about the core and the pelvic floor and what kind of things we can do if we do have incontinence. We'll be right back with Dr. Brooke Winder.

Dr. Linda Bluestein: We're back with Dr. Brooke Winder, and I really appreciate what you're saying about the pelvic floor and engaging the core. I've taken enough Pilates classes that, yes, I know that they are very much about not doing that drawing-your-abdomen-in kind of thing. But it's so interesting because I've noticed dancers standing in the back of the room and you see a variety of things. You see people kind of hanging on their ligaments because they have so much hypermobility and they're so tired — if they're not actually dancing and they're just waiting to go to the center or waiting to go across the floor. So whether you're a dancer or not, in terms of posture and cues and things that we should be thinking about to support our spine, is there anything that might be a good tool for people?

[56:56] Dr. Brooke Winder: Yeah, I think maybe if you are a mover who tends to be really good at the drawing-in part, or you tend to hold a lot of tension there, then sometimes a nice cue can be to actually not be thinking about where the muscles are, but just, you know, stack your ribs on top of your pelvis. What does that feel like? So sort of the imagery of where your bones are, rather than the amount of muscle tension. I find that can sometimes be helpful, especially with performing artists, who get so perfectionistic because that's how they're trained in terms of movement. If you give a muscle cue, someone's like, "Wait, am I doing it right? How much?" And they're really analyzing it. So just "stack your ribs" — more of an external cue or an image — can be helpful.

Or if they are supposed to be keeping their spine still and we're doing core stability exercises, I really try to give them simple rules or set up the environment and tell them, "Your core is gonna turn on. It will — it's gonna respond to what you're doing." So if they're on hands and knees and I want them to keep their spine pretty straight, like, "Can you balance this yoga block on your back and keep breathing, and now move your limbs?" Hopefully their core system should respond to that by turning on.

So sometimes I like to give them the experience of what it feels like when maybe you're just aligning your bones, or you're thinking about one simple image, or thinking about something more task-specific rather than exactly where your alignment needs to be. Sometimes then that needs maybe some more information for people who are hypermobile and might need more precision to feel really good in their joints, certainly. But I find that can be an interesting exploration for dancers who haven't had the opportunity to train that way.

Dr. Linda Bluestein: Yeah. And I love that example you just gave. I know Jennifer has a lot of great little things she would do at IADMS — the International Association for Dance Medicine and Science — when she would do workshops. I've done some of those, and she would have people do these small things that could be really challenging. I think those kinds of exercises are really great because I think it's confusing sometimes: we can do so many great things with our levers, but that doesn't necessarily mean we're having optimal function of our pelvic floor, our diaphragm, our core. Is that accurate to say?

Dr. Brooke Winder: Yeah, I think so. And I would say likely more accurate for people who have hypermobile joints, hypermobile bodies, because there are just more movement options. There's more options for positioning, and typically maybe also some reduced proprioception or sense of where they are in space, especially through those end ranges. And so for someone who's more hypermobile in particular, those tiny adjustments or tiny little tasks to help a dancer find a new alignment or a new stacking can be harder than you might imagine, but also can be really nice because it can give some information into your system that I think is really helpful from a proprioceptive standpoint — and hopefully easy for that dancer to then take into their class or their performance.

Dr. Linda Bluestein: And what about the nervous system? The nervous system and the pelvic floor — the tone of the pelvic floor — how are those connected, and why is that important for people with hypermobility?

Dr. Brooke Winder: The pelvic floor muscles are skeletal muscles, just like your biceps. But what is unique about that whole region is that because we have our bladder and bowel function and our sexual function there as well, there's a lot of neural input coming in from our autonomic nervous system. Our fight-flight-freeze and our rest-and-digest system really signals that region — as it should — to control our organ function. Part of the tensioning and relaxation of the pelvic floor is driven by those systems, because when we need to have a bowel movement or need to pee, we need that coordination of appropriate relaxation to happen. And the muscles need to react really automatically.

Because that's so closely intertwined with how our pelvic floor functions, if we have someone who's hypermobile and dealing with autonomic nervous system dysregulation — something like POTS — that can be a big factor in how their pelvic floor is responding. Even some of the symptoms of POTS could include feeling more urgency in the bladder region, feeling like that continence mechanism is a little thrown off.

So for anyone, whether they're hypermobile or not, any interventions that can help improve nervous system regulation can really help with the pelvic floor, with bladder function, bowel function, and sexual function. But with someone with hypermobility who may be struggling with that kind of overlap with something like POTS, helping them with strategies that manage the POTS symptoms can be a key way to help them with pelvic floor symptoms — maybe even more so than a bladder training program that I might give to someone who doesn't have that complexity of autonomic nervous system involvement.

Dr. Linda Bluestein: That makes sense. Let's move on to sexual function. We've presented together on sexual and pelvic health. How does pelvic floor dysfunction show up in sexual function?

Dr. Brooke Winder: It can show up in a lot of ways. On the pain side of things, if there is dysfunction to the pelvic floor region, that can show up as genital pain, vulvar pain, penile pain, vaginal pain, testicular pain. That can be due to a lot of different factors — irritated nerves, pelvic floor muscle tension or non-relaxation, and some of the other hypermobility-specific things we're going to talk about. Pain with sex and pain with nonpenetrative sexual activities can be common. It can also contribute to issues with arousal — low arousal and low libido can be very common when that system is not well regulated.

On a related end, there are things like mast cell issues, neural compression issues, and things like PGAD — persistent genital arousal disorder/dysfunction — which can also be related to sacral issues. That can be a really, really distressing symptom that people can deal with.

And then issues like incontinence, pelvic organ prolapse, or bladder urgency and frequency can also interfere with sexual function — contributing to lower desire, various kinds of discomfort, and also stress or even shame, because people are dealing with pelvic floor symptoms that are affecting their sex life.

Dr. Linda Bluestein: Yeah. I'm glad you mentioned PGAD and mast cell. When you and I have done presentations together, it's nice that most of the time we've had 90 minutes, so we each have 45 minutes, because there's a lot to cover. And of course we have slides and diagrams and studies, which really help. The PGAD piece is really interesting — there have been studies showing that PGAD is more common in people with hypermobility, so I'm glad you brought that up. So what should rehab clinicians focus on when working with hypermobile patients to help them manage sexual dysfunction?

Dr. Brooke Winder: There are a few big areas when it comes to working with people who are hypermobile. Certainly, if you're a pelvic floor physio, assessing the pelvic floor itself is a given for any patient, whether that's external and/or internal assessment. But particularly for people who are hypermobile, I really think about zooming out to some big themes.

One piece is looking at their pelvic floor symptoms — why is their pelvic floor so angry? Why does it need to hold tension or respond in this way? And then in that zoom out, one of the pieces I think is really important in rehab is looking at all potential other orthopedic issues that someone with hypermobility could be dealing with. People who are hypermobile may have issues — thinking of nearby regions — with hip instability, femoroacetabular impingement, or other joint issues within the hip that need some stability and strength. Treating that hip can allow the pelvic floor to function better.

Similarly with low back issues that are common in people who are hypermobile — there's a higher incidence of things like sacral Tarlov cysts and disc herniations. Is their pelvic floor actually having trouble because of something more proximal that needs assessment? Even zooming further out, issues in the cervical region: people who are hypermobile might be dealing with upper cervical instability or a lot of neck hypermobility that can be really distressing for their nervous system proprioceptively and cause a lot of tension to be held up there. And pelvic floor physical therapists will know that a lot of times tension and clenching up in that region seems to correspond with the pelvic floor also holding a lot of tension.

Very similarly, making sure to screen and help support things like jaw issues with TMJ, gum issues, dental issues — anything in that orofacial region that's more common in people with hypermobility. That can cause a lot of tension up there that then can be one piece also driving tension that already exists at the pelvic floor. So that zoom out and thinking about all the different inroads that could actually help that pelvic floor find better balance — even indirectly — is a really big piece.

And then the other big piece is looking at coping strategies and things like pacing for patients with hypermobility and pelvic floor dysfunction or sexual dysfunction. People who are hypermobile might be dealing with a lot more fatigue or challenges recovering after daily activity or sport. Helping them figure out patterns around when they might be more fatigued — or knowing they get really wiped out by certain things — can be hard, because with hypermobility a lot of patients feel like there's no pattern, they can't predict what's going to happen. But maybe setting up the things they know they go to to calm their system down, whether that's meditation or a heating pad or a brace — like if they feel better putting a neck brace on for a more difficult activity — some of that planning can help them navigate coping strategies when it comes to sexual function, with themselves and with a partner.

Some people with hypermobility might manage symptoms by overdoing it — their sensory system feels better when they just go, go, go, or they actually feel worse sitting too long or standing too long. That might be driving people to do too much without realizing it's part of their behavioral patterning. Trying to find a balance with that is important. Or if someone is having a lot of symptoms through movement and maybe not moving enough, finding an inroad to get moving so that their body can feel more confident with movement — because that's an important piece with sexual function and pelvic symptoms.

And then in terms of sexual function for people who are hypermobile, if you're thinking about strengthening programs, think about sexual positions they feel nervous about getting into — maybe they feel like their hip's going to dislocate, or their shoulder or finger or wrist. Asking questions about that and working with them on exercise positions that might help them build more strength, stability, and confidence so they don't have to sit with as much fear about having a flare-up with sexual activity — even if it's not directly related to their pelvic floor, but related to their surrounding joints.

Dr. Linda Bluestein: Yeah. There's so many things with hypermobility, and even just for people who aren't hypermobile, the pelvic floor is so complicated. We hear, "Oh, just do more Kegels," but you're talking about the relaxation piece — you need to balance the ability to activate the muscles with the ability to relax them. So how do you know where you are on that spectrum? Do I need more Kegels, or do I need to learn to relax my pelvic floor?

Dr. Brooke Winder: Sometimes we can tell most easily with an internal pelvic floor assessment, where we can really palpate a painful region or feel that the muscle is having trouble relaxing. That can give us a clue. But for someone dealing with a pelvic floor issue on their own, things more commonly associated with tension or difficulty relaxing include pain with inserting a tampon, painful sex, urinary frequency or urgency, and painful menstruation. Those tend to correlate more with tension in the pelvic floor — and also incontinence. So look at whether you're dealing with those other things.

On the side of weakness being more of a driver: are you pregnant or early postpartum? If you've given birth vaginally, there may have been a significant stretching of the pelvic floor and strengthening is probably the bigger first step. Or if you've had a pelvic surgery, or a nerve dysfunction that has caused weakness — that's where strengthening makes more sense as the first inroad.

What's interesting — and it keeps getting more complicated, but we also get more information — is that I think we swung the pendulum in the direction of: if someone has too much pelvic floor tone, stop kegeling. I think you can tell that if you're doing pelvic floor contractions and it's making your symptoms worse, that's probably a good clue you need to try a different route. And I know that seems maybe too simple, but a lot of people find themselves saying, "That doesn't make any sense — I'm doing pelvic floor contractions, I thought it was weak, but I'm actually leaking more." So sometimes you start by trying things that foster relaxation — maybe learning some internal or external stretching, self-massage, yoga breathing, or positions that give you relaxation. Does that start to calm your symptoms?

But we are seeing some newer papers in the last couple of years showing that we don't have to totally avoid strengthening with people who have pelvic pain, and that Kegels can be a piece of the puzzle. It's about assessing someone's strength, length, and ability to relax, finding the first inroad to get symptoms under control, and then as we work, sometimes strengthening can help decrease pain. It's about what you find clinically when you assess someone and how they're responding to initial treatment, to help figure out that balance of strength and length.

Dr. Linda Bluestein: Because the pelvic floor can be overactive or underactive. Can a person have it overactive sometimes and underactive other times? Is that possible?

Dr. Brooke Winder: It seems to be the case. With what I was just mentioning, some people with pelvic pain are maybe benefiting from certain types of contraction and strengthening even if they're already holding in an overly tightened position — somehow that strengthening actually helps them learn to relax the muscle. So yeah, it seems like it's just not as simple as being in one lane or the other, which kind of makes sense for us as humans and the way our bodies move. Some people are dealing with a combination of both. And if your muscle is already holding so much, you're not starting at a great length-tension relationship to get a good contraction. In that sense, it can actually kind of seem like it's presenting as underactivity, because you've already shut the door — it's harder to shut it more, so to speak.

[56:56] Dr. Linda Bluestein: Yeah, that makes sense. And are there certain things that people should stop doing that might be making things worse?

[56:58] Dr. Brooke Winder: That's such a good question. Going back to the simplicity side: if you've been noticing pelvic floor symptoms and you assumed, okay, maybe I should start contracting my pelvic floor, and you're noticing it's either not helping or it's making things worse — try something else. Try either strengthening the rest of your body, or what we call downtraining and relaxing it. Just because it sounds like it's supposed to work, if it's not working for you, it maybe it's just not the treatment you need. And I think sometimes people feel, "This is so frustrating. It should work for me. I'm leaking. I'm probably weak. If I'm working on contracting these muscles, why isn't it helping?" And sometimes it's about treating and helping every other aspect of the body to support the pelvic floor so that it can work more efficiently. Or sometimes it's about relaxing the pelvic floor or learning different types of coordination.

And then, maybe more on the clinician side: if you're really focusing on the pelvic floor and it feels like treatment is getting narrow and zeroing in on just pelvic floor strategies, sometimes that's too focused on this region, especially for hypermobile people. Don't forget to zoom out — because sometimes you could be trying to relax their muscles, but if they've got a POTS issue or a mast cell issue that's driving the pelvic pain, you can keep teaching them to relax, but they might actually make some bigger gains if you help get support for those other health considerations that might actually be a bigger driver.

[58:57] Dr. Linda Bluestein: So you're saying that sometimes we can get overly focused on something like the pelvic floor when really there are other contributing factors, and we need to zoom out and look at those other factors as well.

Dr. Brooke Winder: Yeah. Particularly, as I mentioned with the hypermobile population, there's inflammatory drivers. There are a lot of GI system issues, and a lot of times with things like leakage or urinary urgency, managing constipation can have a huge positive impact on reducing bladder symptoms. And so that can be another piece that just can be super helpful. And also managing with a registered dietitian or looking at all the different supports that maybe are needed from a nutritional and nourishment side that might help the constipation and also help energy levels when it comes to athletes. I think that that's just another window to make sure you're thinking about, to see if that can really help that person.

[1:00:09] Dr. Linda Bluestein: And for people who are listening to this and saying, well, that does kind of sound like me, what's the first step they should take?

[1:00:19] Dr. Brooke Winder: Oh boy. I think if they maybe haven't started to find a support system for these issues — so if you're thinking that sounds like me and this is a pelvic floor issue and you've never really connected with a pelvic floor physical therapist — maybe start exploring what that could look like. Because a lot of times pelvic floor PTs are going to be looking at the systems surrounding that and can be really helpful. And I think if you're an athlete, like a dancer or a performer who is resonating with this, working with someone who understands high-level athletes and will look at the whole picture is really helpful.

Someone who can hear the mobility piece, the pelvic piece, and the fact that your whole body needs to really function at a high level can be a really helpful thing. So start reaching out in your community, looking at resources, even people that have been on your podcast and other places, asking around within the performing arts community.

What's interesting on the dance side — I know lots of performing arts PTs now that are pelvic PTs. There's something about where we've headed in that performing arts care. For dancers, I'm seeing more and more — at every conference we go to, there's more and more, at least on the PT side — where they treat orthopedic issues and high-level dancers and are also trained in pelvic floor. Which I think is so cool and exciting. So just know that we're out there. Hopefully more of us are multiplying every year.

[1:02:12] Dr. Linda Bluestein: Yeah, I hope so too, because it's the whole hammer-nail thing — you only have the tools that you have. So the more tools you have, the more you can help somebody. If you're trained in orthopedic physical therapy and also pelvic floor physical therapy, you're going to be able to offer such a wider range of things.

And don't get me started on insurance — "oh, but you're treating the left ankle, God forbid you look at the right ankle, or God forbid you look at the left knee." It just drives me insane. For the insurance companies that are listening: everything in the body is connected. Number one, everything in the body is connected. And number two, if there are any insurance people listening, please, please, please pay more for these ancillary things that people desperately need. You'll pay for outrageously expensive surgeries, but people need things like this. They need to be able to go to Pilates and ideally have their insurance pay for it because it's for their health and it's going to help them function better. And it might save you a lot of money in the long run — but I know insurance companies are not looking at things that way. They're not thinking preventatively. But yeah, that's obviously one of my soapboxes.

Before we wrap up, can you tell me what you think is a big misconception about pelvic floor physical therapy that you want to take this opportunity to clear up?

[1:03:50] Dr. Brooke Winder: I would say for potential patients — people who are having pelvic floor issues and thinking about what pelvic floor physical therapy is — one of the misconceptions is that it only, or has to, involve an internal exam of that region, which can feel really scary and intimidating for people, or it might not be what someone ever wants to pursue. And I think that can hold people back sometimes from getting an assessment from a pelvic floor physical therapist or physio.

So I think it's important for people to know that an internal exam is a method of assessing the pelvic floor muscles, but it is not the only way we assess muscles. I treat lots of people virtually, and I obviously don't do internal exams — I'm not seeing the patient right in front of me — and we figure out lots of strategies to help the pelvic floor.

You have agency. You are the person who gets to decide what is important to you in your care and what you feel comfortable with. You don't have to have an internal exam. There are a lot of ways we can figure out what's going on. A lot of times we're looking at whole body function, and there's ultrasound, there are external modes of assessment. Technology is continuing to give people lots of options. So just know that pelvic floor PT is not just about the pelvis and not just about internal exams. It really is looking through a lens very similar to what I would call orthopedic PT. If more people can know that, and know that you can find many, many pelvic physios who will work with you and who will respect it if you're not comfortable doing an internal exam, there are lots of ways to figure out what's going on.

[1:05:54] Dr. Linda Bluestein: And that's great that you can actually do it virtually, like we're doing right now. I'm in my home office. Okay, well, this was such a great conversation. We like to end every episode with a hypermobility hack — do you have one to share with us?

[1:06:13] Dr. Brooke Winder: Yeah. If you are hypermobile, just know that even if you have a ton more mobility and maybe some connective tissues that don't respond the same way as other people's, you can get strong. You can perform at a high level if that's something that you want. I think it's about finding the right recipe for you and figuring out how you feel best supported and how you navigate movement. And that sometimes can be about slowly building a team that supports you and figuring out little bits of something here and something there that can help you feel like you can take your movement to the next level, no matter where your level is to start with.

[1:07:03] Dr. Linda Bluestein: I think I've told you that it was listening to you in one of our talks together — you were saying something about how sometimes having weights actually helps with proprioception. And I kept thinking that I had to be really good at doing my weight training class with just arm weight before I could hold any weights in my hands. After listening to you say that, I thought, I'm going to try to start using light weights. And it did seem like it helped my proprioception, and of course helped me get stronger faster. So I really have you to thank for my actually making some progress in that direction and building some muscle recently, so thank you.

[1:07:41] Dr. Brooke Winder: That's so awesome. And I think it's important to know that even if there are these other factors, tissues respond to load — load can help improve resilience of our tissues. We just might have to tweak how fast that happens or how we recover. But it's often helpful. And like you said, helpful on the proprioceptive end. Sometimes I can be giving a million cues to someone about their alignment, particularly if they're hypermobile, and then I'm like, oh, this isn't helping. I'm not giving them helpful feedback. And if I hand them a weight, their body figures it out because they've got that axial or compressive load that just helps their body figure out what feels good to them.

[1:08:29] Dr. Linda Bluestein: And this is where it's so tricky, because it's so common to have kinesiophobia when we're hypermobile, right? So we're afraid to move, and we could get injured doing small little things. It's ironic — I've injured myself doing small little things. But now I'm going to this weight training class three times a week and, knock on wood, been doing well with that.

It can be so tricky to figure that out. But no matter what, you need to have a certain amount of load on your tissues — whether you have a genetic connective tissue disorder, or if your connective tissue isn't functioning as well as you would like because your immune system isn't functioning optimally. Either way, we need to keep doing some challenges on our bodies, because otherwise we will get weaker. Is that correct?

Dr. Brooke Winder: Yeah. If we really distill it down, exercise as an intervention is really helpful in so many ways, and the magnitude or intensity of that can obviously be scaled. But our tissues need some type of stress — not all stress is bad stress — and we need some type of stress to keep that stimulus for our bone health, for our muscle health, and for our connective tissue health.

And I find with the dancers I work with who are hypermobile, sometimes they can be doing these really high-level things in class and in their performance, and then they're like, "You know what really threw me off was sleeping" — because they were in a passive position, and that felt actually more uncomfortable than when they are getting that stimulus for all their muscles to contract around their joints and support them.

And that feedback from moving — and also the joy of movement. If you can find something that gives you a little bit of joy, or is kind of fun, it can feel good to make that little leap or that little accomplishment in feeling a little bit stronger.

[1:10:35] Dr. Linda Bluestein: And I want to acknowledge that people who have post-exertional malaise, that can be very, very tricky to figure out — like, what can I do? I'm not saying that everyone should go do a graded exercise program, because I know that can really set some people back. Those programs are often very prescriptive — do this, then this, then this. We really need to individualize things and make sure we're meeting people where they're at and helping them to move as much as they can, because otherwise it seems like it turns into sarcopenia, muscle loss, and other suboptimal things like dysfunction of the autonomic nervous system. Not to throw that in at the very end, but I just realized that what I said earlier could be misinterpreted by some people.

[1:11:23] Dr. Brooke Winder: Yeah, 100%. And I'll put a lens on that. I work with a lot of hypermobile folks who are high-level athletes, and I acknowledge that that is definitely not everyone's experience when you're dealing with a hypermobility issue. Maybe your goal is just, "I need to get out of bed today." So "moving more" is scaled so differently depending on where you're at and what your needs are and what your symptoms and conditions are. I definitely agree — that's such a good point.

[1:11:58] Dr. Linda Bluestein: Yeah, and thank you for saying that. That's why I really — every so often I've thought about, oh, should I change the name of Bendy Bodies? But really I want this to be for anyone who has hypermobility, whether they are a high-level performing athlete or someone who can't get out of bed and has so many things going on. Of course there are massive differences between these people, and science hasn't really caught up yet, but hopefully we're making some progress to figure out why people can look so vastly different from each other yet also have some similarities.

Well, this has been a fascinating conversation as always. I love getting to hang out with you, and it was fun to get to do this.

[1:12:40] Dr. Brooke Winder: Yes, thank you so much. It's so great talking with you.

[1:13:13] Dr. Linda Bluestein: Thank you so much for listening to this week's episode of the Bendy Bodies Podcast. If you'd like to go deeper, I share additional education, clinical insights, and resources in my newsletter, the Bendy Bulletin, which you can find on Substack at hypermobilitymd.substack.com. You can also help us spread the word about connective tissue disorders by leaving a review, sharing this episode, or sending it to someone who needs it. These small actions truly make a difference in raising awareness about conditions that are still widely misunderstood.

And don't forget, full video episodes are available every week on YouTube at Bendy Bodies Podcast. As many of you know, I offer one-on-one coaching and mentorship for both individuals living with connective tissue disorders and people caring for them. You can learn more about these options on the services page at hypermobilitymd.com.

You can find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, X, and LinkedIn, all at hypermobilitymd. As part of our collaboration with the UVA Ehlers-Danlos Syndrome Center, we also want to share some of their helpful resources. For questions or appointment inquiries, you can contact the UVA EDS Center at [email protected]. Again, that's the letter R as in Robert, UVA EDS Center at uvahelp.org. You can find answers to common questions at uvahealth.com/support/eds/faq.

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