In Your Pants with Dr. Susie G - Ehlers-Danlos syndrome hypermobility, pelvic floor, and chronic pain

Starting point is 00:00:00 Hi everyone, Dr. Susie G here and welcome to another In Your Pants podcast. Thanks so much for being here today. So today's show on tap is hypermobility spectrum disorders and particularly talking about Ehlers-Danlos Syndrome and the difference in the varying different types of hypermobility disorders that there are. We dive into the complexities of hypermobility disorders, the diagnostic criteria, the symptomology, and also the differences between female and male bodies that might present themselves differently with hypermobile disorders and why early diagnosis is really important to differentiate from other potential collagen related disorders. We also dive into the impact that hypermobility disorders have on the urogenital and urogynecological systems

Starting point is 00:01:19 and how the pelvic floor is impacted. So to help me unpack this very big topic, I have special guest Libby Hinesley. Libby Hinesley is a doctor of physical therapy and a certified yoga therapist specializing in the treatment of chronic pain, hypermobility disorders, and yoga-related injuries. She has taught yoga since 2005 and has trained yoga teachers for over a decade. Her new book, Yoga for Venni People, Optimizing the Benefits of Yoga for Hypermobility, explores how people with joint hypermobility can avoid injury and instead use tools of yoga to support their thriving. The book is for all yoga teachers as well as bendy practitioners. Libby is also the co-founder of Anatomy Bites, a monthly membership for yoga

Starting point is 00:02:20 teachers who want to learn anatomy in a fun, supportive, and highly relevant way. So without further ado, here's the show. Hope you enjoy it. Hi Libby, thank you so much for being on the show today. Hi, thanks for having me. This is exciting because I have had so many inquiries about hypermobility disorders or conditions regarding the pelvic floor. and I was thinking to myself, who can I get on the show to talk about this? And my local

Starting point is 00:02:55 colleague and friend Libby, of course, you came to mind. So I'm so happy again that you're here and that we can talk about hypermobility issues and how bendy people can live well even with hypermobility issues. So let's first start to unpack what are hypermobility issues. And in particular, there's one subset of that from my understanding of being named Ehlers-Danlos syndrome. Can you unpack that a little bit for us and what that means? Yes. So it's kind of confusing. Hypermobility as a term isn't pathological. It describes joints that move more than is normal to move, you know, in normal ranges of motion. There are a lot of reasons that could be the case. But for a lot of people who have global generalized joint

Starting point is 00:03:50 hypermobility, it's the result of a genetic difference in their collagen, either in the structure of the collagen or the even the cellular function of cells that make collagen. And that is when it becomes symptomatic for a lot of people. And so symptomatic hypermobility, we could call a hypermobility syndrome. Now there are a lot of different conditions that have hypermobility as a feature, but the Ehlers-Danlos syndromes is the most common one and one of the most common. And there's a big group of 14 different subtypes of Ehlers-Danlos syndrome. Now what's complicated about that is most of them are rare and, or even ultra rare. And most of them have a blood test, like a genetic molecular marker you can test for. But there's one type that does not have that yet.

Starting point is 00:04:41 And that is the most common type. And that's the hypermobile type. Hypermobile type, they all are hypermobile, but the hypermobile type is the most common type. And it's the least well understood, unfortunately. And it's the one that is the least well diagnosed because it doesn't have a blood test. It is currently diagnosed by a clinical checklist of symptoms, signs and symptoms. So any doctor should be able to make the diagnosis fairly easily.

Starting point is 00:05:11 It's just that the problem is many doctors aren't well aware of it. They don't really know much about it. And so it goes missed a lot. And people who have it have usually a wide range of multi-system involvement. Now, I also wanna say that there's another category of people who have signs and symptoms that are overlapping with hypermobile EDS and very similar,

Starting point is 00:05:35 equally severe, sometimes more severe, but they don't actually meet all the checklists. And those people are given a different diagnosis called hypermobility spectrum disorder. So it's all sort of a big ball of yarn. But what's important to know, I think for listeners is that even if they haven't been diagnosed with hypermobile EDS, they still could have just as severe symptoms. They may not qualify for that criteria, the diagnostic criteria that is really set up to support genetic research to like really hone in on what is the genetic underpinning of this type of EDS. Cause there's tons of research that's about to come out. I think there's, we're going to learn a lot really soon, but anyway, those people have hypermobility spectrum disorder

Starting point is 00:06:21 and they're, they're treated the same way clinically. So another reason that I really advocate people seek diagnosis is that they may actually have another form of EDS that is more serious that should be ruled out. So when someone presents with a little connective tissue disorder, you know, the largest possible umbrella here is inherited connective tissue disorder. Well, you know, they may have one that is more life-threatening like vascular EDS is one of these examples where your blood vessels are really fragile and they're, they're prone to rupture. We need to know about that early. Right. And so that's very rare actually. So I don't want to scare people, but it's just an example of, okay, I'm going to go get this rule, rule out the other

Starting point is 00:07:02 types of EDS. And then we can narrow down to hypermobile type, which isn't going to be life threatening per se, but it'll impact quality of life. Okay. And so Libby, what are some of those like diagnostic criteria that people should maybe look out for or clinicians who may not know a lot about what we're talking about? What is that criteria? Yeah. So there are a lot of different things on that list, but a few of them are generalized joint hypermobility, and that's scored by the Byton scale, which is quite limited, but nonetheless, it's a quick screen. And so depending on your age, you need a four or a five out of nine on that test to kind of check that off your list. If you're older, you can get a lower score because you kind of get

Starting point is 00:07:45 stiffer with age and then presence of chronic pain, musculoskeletal pain for more than three months. Um, any history of dislocations, non-traumatic dislocations, and even things like long wingspan, you know, the, the wingspan to height ratio is usually off on people. They have really long arms, essentially. I've got really long arms. They call it the ape index, you know, it's, which is kind of crazy. These are really long arms and then long fingers. And so there's the wrist sign and different things like that that are on there. And then of particular relevance to our conversation, pelvic organ prolapse is a diagnostic criteria for hypermobile EDS. Anyway, those are some of many different things on this list. Right. I got you. Okay.

Starting point is 00:08:37 And then you did mention the biomarker blood test that is done for a lot, except for the most common one. Okay. Exactly. Exactly. And there's lots of, you know, if it was simple, if it was a simple genetic mutation type of thing, it would have found already. So the thinking out there in research land on this is that it's just more complicated and it may have to do with genes that regulate systemic inflammation or something else about the immune system in addition to collagen and stuff. So it's interesting. That is very interesting. Now, how long does it take for someone to get, quote, diagnosed? I can imagine that this goes very maybe underreported are overlooked just because of the lack of knowledge and education as far as being able to

Starting point is 00:09:33 efficiently diagnose or recognize early signs. But in your experience and in the research that you've looked at, how long does it take for someone to actually get an appropriate diagnosis? The average time to diagnosis is 10 years. Wow. Yeah. Yeah. And I mean, for me, I got diagnosed when I was 42 or 43. That was just a few years ago. And I've had symptoms. I mean, I'm a classic case and I've had symptoms for my entire life, especially in my entire adult life. Things sort of went downhill in my twenties, but that's really common for people because it's hard to know what's normal and what other human bodies are experiencing. And then there are these vague clusters of symptoms that they don't fit in any specific medical specialty. So they don't make sense in

Starting point is 00:10:23 our specialty model of medical care. They are multi-system. So people often have all the musculoskeletal issues, but they also often have anxiety and other neurodevelopmental differences, even way overrepresented in this population. Mass cell activation is a really common one, mast cell activation disorder, which can in turn lead to some pelvic floor issues. But, um, you know, that's a piece that is, you know, often causes all kinds of symptoms. Um, and then there's dysautonomia like POTS, postural orthostatic tachycardia syndrome. So people are having cardiac symptoms, they're having mental health issues, digestive issues, IBS type stuff, leaky gut, delayed gastric emptying. So this sort of covers a lot of specialties.

Starting point is 00:11:13 Okay. And so you kind of just listed a lot of symptoms that one might experience, but I can imagine that everyone's experience and cluster of symptoms might present differently. So I guess where I'm getting at is, could you still have hypermobile tendencies, but yet not have really any, any symptomology or, or is that not what you're seeing in, um, the research and literature? You definitely can. And that makes it really tricky to understand. And, you know, as far as diagnosis goes, because everyone does present really differently. And sometimes people have, you know, maybe just the musculoskeletal symptoms, but then they go through something like a big hormonal change. Maybe it's menopause, maybe it's pregnancy. And then everything just

Starting point is 00:12:00 blows up. And it's really common for people to have their symptoms magnified after pregnancy. And that was the case for me too. Okay. Okay. That, that would make sense because so many changes, well, hormones are part of the tissues or hormones live in the tissues of the vulvovaginal urogynecological area. And those changes, they make a difference. And if there's already a predisposition like you're saying then that can tip the scale it can and you know other things just like going through any kind of trauma surgical trauma life trauma virus viral exposure things like that can kind of flip a switch so in a way this often shares some characteristics of an autoimmune type of presentation because of that it's not just it's not pure mechanics it's it's

Starting point is 00:12:54 just more complex than that. But again, not super well understood about what the mechanism really is underneath it. Right. I feel like that is with so many things in the medical field, right? Like mechanism unknown, you know, like under reading literature, which isn't, it doesn't really feel grounding in some aspects. There's so much uncertainty. I know humans are so complex, you know, and they're so variable and, and things really do show up in these unique ways. And I've heard a lot of people say, well, I have hypermobility and, you know, I've got anxiety. Anxiety is like one of the most common pieces because there's some actual brain differences in hypermobile people that predispose them to having some mental health challenges. in particular just increased sympathetic arousal which looks like anxiety and high heart rate and all this kind of stuff so but anyway a lot of people will say well I have this it's it's not nearly as bad as EDS you know so there's often this story that oh if you have EDS that's really

Starting point is 00:14:01 really bad you know and I surely don't have that and that's not the case I mean there are plenty of high functioning people who have EDS, I'm one of them, you know, and, and it also, there are plenty of people who need mobility aids, you know, and who are more impaired by the condition. And there's a wide spectrum of people who all have the same condition, but have it differently. Right, right. And I think the challenge is also just even the nomenclature and the language that, you know, the language choices around diagnoses. And it's kind of like, you know, there's this one broad umbrella term but but it's almost oversimplifying the complexity of the biology yeah it is true so well speaking of complexity and in kind of going into um one of our passions

Starting point is 00:14:48 which is the pelvic the pelvic health pelvic health and the pelvic floor in your in your experience and in the literature how does hypermobility um issues or disorders impact the urogenital system in, in both men and women, if there's a difference at all. Um, uh, and what are some of those things that some people may experience more of when compared to someone who doesn't have, um, hypermobile, uh, conditions? Yeah. So there's so many things to say about this or because, you know, the pelvis is made up of all these things that are made up out of collagen. It's like, it's just really, you know, our whole body is, that's why these conditions affect the entire body, every system. So, um, in the pelvis, gosh, uh, well, let's talk about

Starting point is 00:15:41 female bodies and then we'll talk about male bodies. Um, and actually let me just start by saying this hypermobile EDS is thought to be autosomal dominant as far as its genetics. That's so because of that that just means one parent needs to pass it on and from like a purely genetic statistical standpoint male bodies and female bodies should have the same prevalence of this condition but what we find is that it seems to be more prevalent among female-bodied people and that may be because they have sort of this extra hormonal overlay that perhaps exposes the symptoms more readily. I'm not sure. I don't know how to explain that, but usually in the research, it'll show up to be about like 70% female, 30% male or 60, 40. So it's skewed,

Starting point is 00:16:34 but I'm not sure that's accurate. And again, I think over the next even five years, we'll learn a ton more, but regardless of what kind of pelvis you have, you're likely to have impacts in your pelvis. If you have a hypermobility syndrome and the big ones are pelvic organ prolapse and incontinence, um, of all urinary fecal incontinence, all the things it's sort of like the theme with the collagen difference is that the collagen that makes up a lot of connective tissue and even blood vessel linings and all that gut lining is, um, is floppier. It's like, it's got more laxity, which means it just sort of like, I usually say like, there's a theme of just sag. Things are just going to sag. And if you think about inside your body, inside the pelvis,

Starting point is 00:17:24 everything's just like sagging because it doesn't have the background level of just passive support that the pelvis, the organs of the pelvis just want to have. You know, if you have a vagina, the vaginal vault the tissues are just not as taut they're going to be more saggy they're going to be more likely to allow the rectum or the bladder to prolapse into it things like that and even if you don't have a vagina there the organs are going to be sagging on the inside and certainly you might have a more of a rectal kind of herniation type of situation okay that that clarifies a lot as far as you know sometimes when we think of prolapse we're always associating that with female bodies, but that can, that can also be, you know, be the case for someone who has

Starting point is 00:18:15 male parts as well. Exactly. It just isn't going to look quite the same, but you may, we may have some kind of changes in function due to some internal sag, internal sag is less external sag, but more internal sag. And then if you think about the tissues themselves, like in the anus and rectum, in the vagina, they're more prone to tearing. So we have more prevalence of like anal fissures, hemorrhoids, even in vaginal tearing and bleeding after intercourse and things like that. Now, those are kind of some saggy symptoms. We also have a lot of global muscle hypertonicity or like muscle tension, or we could call it chronic muscle contraction. And so that's also going to show up in the pelvic floor muscles.

Starting point is 00:19:09 That's often, it comes in as compensation for all the saggy, passive tissues, saggy, passive structures, equal compensating active structures. So, so one of the kind of counterintuitive pieces with hypermobility is here's a floppy bendy person whose muscles are so tight and painful all the time. They're just like this. And so you translate that to the pelvic floor. you get a higher incidence of pelvic pain. Vulvodynia is really common. Vulva pain, pain with intercourse, things like that. So then from a pelvic, if we could put our

Starting point is 00:19:47 pelvic hats on, from a pelvic perspective then, when you're working with someone who has hypermobility disorder, and I know this is certainly individualized to the person, certainly there's no one size that fits all, but it sounds to me like maybe not emphasizing the contraction or the, the emphasizing the tension, but it sounds like we might be wanting to focus on something else instead is, am I on the right track? Yes, at least do both at the same time, you know, it's sort of like two sides of the same coin. And this is the case, whether we're talking about pelvic floor muscle tension or just, you know, crazy upper traps or wherever it shows up in the body is that the reason there's tension is because there's lack of stability and lack of

Starting point is 00:20:36 functional strength. And in the bendy person, that's going to be a given. We just, we're always going to have to work on muscular strength, muscular endurance, because we always need more and our muscles are compensating all day long for the lack of their passive support system that should be there but is not quite there and so they're tired and they get kind of they they're just trying to do their job so they'll go into more spasmy kind of stuff and just chronic contraction trigger points things like that that can be pain generating so so we have to do strengthening but we can't really strengthen a muscle that's already like this we have to like let it relax. So that then when we tell it to contract, it has somewhere to go.

Starting point is 00:21:28 Yeah. Because, you know, obviously, I mean, you deal with this all the time when you have a muscle that's already contracted and you say contract, it's like, I'm already doing that. I don't have anywhere else to go. So often we got to start with unwinding some of that tension at the same time while we're trying to build a foundation of functional strength underneath it yeah that that makes sense on that term functional strength um it's like my love language right like how do we apply all these things to the person functionally to create meaningful and purposeful change um as far as helping them feel better in their bodies and and move better with with comfort and confidence and i you know i i could almost imagine that hearing and you you mentioned this

Starting point is 00:22:16 the beginning of our conversation of like how, you know, hypermobile and syndrome and, you know, the language around, you know, how we use to describe kind of what our bodies are doing might actually, I feel like some of them are really scary, you know, and, and then that makes me think about, well, if, if motor output or how our muscles behave is really also based on what the brain is doing as far as, you know, if we're feeling comfortable and confident and, you know, that we can cope and manage and handle this and have sense of, you know, resiliency physically and mentally. But then all the fear, for lack of a better word, fear mongering that's out there about our bodies and our movements and things like that, like I can only imagine how that

Starting point is 00:23:00 then impacts the motor output. With that, what we're talking about, that excessive tensioning and overactivity and overprotection. I don't know if you have any comments about that, about the fear and the just the internal threats that somebody might be going through knowing that they have now they have this diagnosis or that um yeah that there's something you know wrong with their bodies yes inverted quotes for sure it's such a tricky topic diagnosis in general because so many people don't want to label they don't want to be put in a box and but I, I am a huge advocate for diagnosis of EDS because the more people that are diagnosed, the more people technically have it. And then doctors have to learn about it and then they

Starting point is 00:23:49 can't miss it so easily. I mean, so it's like a public service, public health service to get diagnosed just to educate your doctors. But the other thing is it's, it's like, it's understanding when I got diagnosed oh my god my whole life just it makes sense now everything about it makes sense and it isn't scary my pain isn't scary anymore because I understand why it's there you know it's like if people don't understand why their muscles are going like crazy and they're so in so much pain then it is scary and then we're stuck and then we've got stories and narratives about it um and a lot of self-limiting um kind of stuff going on but once we can understand why it's there we can learn about it and be like oh this isn't scary i have a different body like i

Starting point is 00:24:42 literally i have a different physiology i have a different nervous system i've got different tissues that's all it is and it requires a little extra tlc and now that i know i feel better because I can just like do the TLC. And some days I don't like it because it's tiring. And, you know, some days I get discouraged, but it's, it's very freeing, I think. And I, and I hear that from a lot of other people to getting a diagnosis, freeze them up to be less afraid and to move forward with getting back to life. So the other thing I want to say though, about that is people with hypermobility syndromes actually have been shown to have a larger amygdala in their brain which is like the threat detector you know it's like the part of the brain that is really involved with

Starting point is 00:25:33 looking around and sensing threat and making sure we're safe and so it is overactive and larger so more real estate for threat detection and these people certainly tend to show a stronger post traumatic response and tend to sense threat everywhere. And so that is part of the condition too, that we're dealing with. And that also is part of what leads to all this muscle contraction because sympathetic arousal equals like that. So it's like, it's a perfect storm, you know? And so I think the more we can learn about it, the more we start to unravel that. And we can really say, huh, this isn't like a character flaw that maybe I have anxiety or I'm kind of fearful or something. It's actually my physiology. And now I can work with that and teach my physiology

Starting point is 00:26:18 to do things a little differently. I love that. I can, I can, it's, it's autonomous self-agency and having autonomy and independence and like, okay, the more I understand about my body and how it works, the more empowered I am to do the things that I love and continue to participate in activities in a meaningful way. And I also heard in, in what you just said, as far as the mental health component of, I mean, I guess how important for me, I'm a little biased, but the psychological component, the mental health component and the support that I think it sounds like it's very imperative to have support around those parts of health as well. I think it's imperative. It's, I mean, it's not going to be like universally present, but it is one of the

Starting point is 00:27:10 most common kind of comorbid conditions would be anxiety is the big one. I think some research shows that 70% of people with hypermobility have anxiety or panic disorder. So it's really, really prevalent. And it's helpful to understand that certainly there may be some psychological components to that, but so much of it is simply this different physiology. So it kind of takes some of the lingering stigma or judgment you know that we don't need to have but we still kind of have and we just kind of understand it more accurately and say you know i got um a wild sympathetic nervous system it is ready all the time to pounce and i can do some things that help to train it i can do some things you know right right like don't be so protective yeah it's but

Starting point is 00:28:04 it's your physiology is doing what it knows to do best and that is to protect you and yeah exactly sometimes it can be too protective yeah exactly and better safe than sorry that's kind of like the nervous system's motto better safe than sorry i'm just gonna turn this up exactly exactly better safe than sorry even though that that you know 99.9 percent of the time you know right it's like that's the worst case scenario really always happened you know right so uh right and for some people yeah you know so I don't want to dismiss that for sure um so yeah no that's beautiful beautifully said that was great um I I wanted to ask you if in your research and the literature that you've read what is out there about you know male bodies and specifically you

Starting point is 00:28:56 EDS or hypermobile syndromes. I know off the air, we were discussing how there's in general a gap in research around just pelvic health and male bodies in particular, but I'm curious if that's the same thing with hypermobile disorders and conditions and men. Yeah. I'd say there's just a huge gap. There's almost nothing out there about male-specific EDS experiences. I mean, I found, you know, a couple literally case reports, you know, I mean, there's, there's so little research that really separates out what's the experience of a male body person who has EDS or hypermobility syndrome versus female body person. And it just doesn't exist, but we know there are plenty of male body people who have EDS and it doesn't, it's always

Starting point is 00:29:51 going to look the same, but they're going to likely struggle with maybe joint dislocations or subluxations, easy bruising, some skin differences. But sometimes, especially I see this in male bodies, there's such a strong compensatory muscle tension that comes in that they don't look bendy. You don't see them moving around and think, whoa, they're a bendy person now some some you do I've certainly seen plenty of men who appear bendy you know but plenty also don't because especially their hamstrings are just like so they call it like this there's this retraction of the hamstrings that they call it in the research and there are even some researchers who argue we shouldn't even use a forward fold as a screen for hypermobility

Starting point is 00:30:39 because this hamstring crazy tension is so common that it, it masks it. You can't see what's going on because flexibility and mobility are different things. And when you have hypermobility, you often have less flexibility as a response. And so visually it looks different. And I think that's more common among male bodies, at least based on the just little anecdotal, you know, my own personal experience right right now that's very interesting and that's something for me certainly to keep in mind um when when just observing people's movements and mobility patterns um yeah you want to look at the passive range of motion it will tell you so much more you might see someone they can barely you know reach towards the floor but then you get them on the table and

Starting point is 00:31:26 you're like whoa this is just like really floppy you know it doesn't always show up it's hiding in there a lot. Um, but you know, some of the case studies on men in particular with EDS, uh, let's see, I was just looking some of this up, like literally, uh, maybe there were four case studies or something like that, but some of them had, um, well, testicular torsion like, and low sex hormones. But again, it's, it's impossible to say, is that related to the EDS or is that just random right this person has WDS and they happen to have this other thing there's really no way to know right about that so right no well thank well thank you so appreciate you you know try the attempt of researching around men and putting that out because it is I mean I'm not surprised

Starting point is 00:32:19 to be honest because that's my experience with other pieces of of topics like pelvic pain for example being one of them and um and and sexual motivation and and drive you know um desire so yeah there's so there's a huge there's a huge gap i'd say i mean what i would expect would be similar things from to a female body that show up a little differently in a male body i would expect muscle tension and pain across so what i'd expect across the board and i would expect fatigue which may impact kind of sex drive and things like that. Yeah. And just like interpersonal fatigue and all the different ramifications of that chronic fatigue and even fibromyalgia is really common in this population. There's some research that shows 80% of people who have

Starting point is 00:33:08 hypermobility. Sorry, let me say that again differently. 80% of people who have fibromyalgia also have hypermobility. That is an interesting figure. Wow. That's what some research show. um that's like the highest number that i've seen in the research and to some that even think i you know fibromyalgia may be a misdiagnosis and maybe what people have is actually a hypermobility syndrome so yeah who knows it's um it's murky but but i would expect that in in male bodies you know the pain uh pelvic pain issues right and the anxiety the feelings of anxiety and all of that it still applies um you had mentioned that you're you're excited of where there's it sounds like there's more research being done and perhaps in the horizon some some research is going to be

Starting point is 00:34:02 um shared with us you is that something that you're keeping tabs tabs on you mentioned something like yeah but i was like is is i'm assuming there's an ongoing investigation going on for there are i think there are several um there are several ongoing investigations into specifically hypermobile eds and hypermobility spectrum disorder that sort of broad umbrella which is most people with symptomatic hypermobility would fall into this big category that includes hypermobile hypermobility spectrum disorder and hypermobile eds because they're treated the same clinically anyway um there's a lot of research going on there's one lab in charleston at the medical university of south carolina in charleston called the norris lab because dr norris runs the lab i've never met

Starting point is 00:34:48 him but but i know him because of online and um he has a whole team of researchers and they are researching this all the time and they have got an article in peer review right now who who knows how long that period process will take but they have a candidate gene or genes that they've identified in their in their big research and they've got my saliva down there i said mine in oh it's awesome exciting yeah yeah so really interesting stuff they're doing you can follow them online to the norris lab at musc and there are others too that i just i don't know as much about oh that's that is really exciting that's great and we'll make sure to link that resource in the podcast show notes and the youtube description so yeah thank you for sharing

Starting point is 00:35:35 that and speaking of resources i a little birdie told me you have a book for bendy oh yeah i got it right here so i just wrote this book uh yoga for bendy people and it really is about the first few chapters really explain hypermobility kind of what we talked about and the different ramifications of hypermobility syndromes and some background information and background about yoga Because my thought is when there's a book that's yoga for fill in the blank, some flags should go up, right? Because there's some assumptions going on, which is part of why I went with this title because it's a conversation starter, right?

Starting point is 00:36:20 And we have to unpack what is yoga? What is that? What are we talking about? Yoga for XYZ. So I do spend some time on that. And then the book really is about how can yoga be used as a tool to support people with these conditions? Because so often they come to yoga, they love yoga because they're bendy and they're really good at all the hard pretzely stuff. And that feels good, you know, and they love stretching because they always feel tight. They feel tight all the time. And so there are a lot of reasons they come to yoga. They have anxiety, poor sleep, right?

Starting point is 00:36:54 A lot of things lead them to yoga, but then they get there and they often are injured or they have more pain following and things like that. So it doesn't often go well for them, but it doesn't have to be that way. So that's what this book is about. It's about how do we use the tools of yoga, asana and beyond to really specifically address the issues that this population has and support them. Oh, that's wonderful. resource that is not to my knowledge ever been written. So maybe some shades of that,

Starting point is 00:37:25 but this is great. And I want you to comment on the cover and specifically the zebra. Zebra. I've got zebras everywhere in my house. So the zebra, a lot of people pick up the book and they're like, oh, cool. You're dressed as a zebra. That's fun. Like, well, it is fun. And it's also relevant. So the zebra has basically become a mascot for hypermobility spectrum disorders and eds um and the story goes that medical practitioners are trained to uh to like this quote when you hear hoof beats behind you don't expect a turnaround in zebra okay which is to say when someone's telling you their symptoms it's probably nothing out of the ordinary you don't think it's some weird exotic rare thing it's probably just a horse right so go with the

Starting point is 00:38:15 simpler thing and unfortunately for many people with these conditions the simpler explanation is and maybe they're a little crazy and we just don't really believe them there's a lot of medical gas lighting that goes up on big time for people um and it's not always even intentional it's just it's a knowledge gap for practitioners but at any rate um the whole point is hey look there's zebras everywhere and sometimes when you hear hoofbeats behind you there's zebras you need to start seeing the zebras. So I have embraced that mascot as like an awareness raising point. Thank you so much. That is pretty significant. And also just a really great reminder for me as a practitioner to not just always go to the default that might be running in the background,

Starting point is 00:39:03 but, but really listen, observe and think outside of the traditional box, so to speak. Yes. And it's so hard to do that as a practitioner, because we do get in habits of thinking and habits of kind of pattern recognition. Right. And, and it can be really hard to have sort of that little beginner's mindset at every time, but, you know, in pelvic health world and really in, in rheumatology and psychiatry and so many different specialties, people should be thinking about these conditions because the comorbidities, I mean, the pelvic health issues, we can almost guarantee they're going to show up at some point, right? The kind of joint pain, like the digestive stuff, the cardiac stuff, these things are going to show up and they need to be on people's radars.

Starting point is 00:39:53 So, right. Exactly. Exactly. Well, I love that. What a, what a message of hope and empowerment. And before we bid each other adieu, I would just like to offer a space of, is there, if there are people who might have this condition or are curious about learning more, certainly they have your book, but is there like a particular tip or word of a piece of advice that you would share with people who, yeah, who are going through this and, or may not and not even know it, you know? Yeah, well, I would say, you know, my book hopefully gives some background. There are other good resources online. And the main thing is, if your doctor, through no real fault of their own necessarily, but if they're not responsive to your needs and to your concerns, just get a different one. And keep looking until you find one that believes you, that takes you seriously. I mean, it's okay if you like them personally as a pal, but get a different doctor, you know, and, and keep looking for those practitioners. And all you really need is to find one that's willing to learn, to learn about what you have and help you. And, and they're out there for sure. Plenty of people want to learn about this. And if you are experiencing the pelvic issues,

Starting point is 00:41:13 you're not alone this is like almost to be expected and go find yourself a pelvic PT like Susie I'm like Libby so thank you Libby thank you no that was beautiful advice and and well said so thank you so much for sharing that and and for sharing your experiences with us and your knowledge and your wisdom um so Libby if listeners and viewers wanted to connect with you how can they find you? They can find me at my website, LibbyHindsley.com. And I'm also mostly on Instagram as far as social media goes, Libby Hindsley PT. Those are the best ways to keep up with what's going on. I will say I'm going to be launching a whole online studio later this year called the Hypermobility Hub. And it's going to offer several live online classes specifically for bendy people.

Starting point is 00:42:04 There'd be yoga, some basic strength training, and also some nervous system regulation kind of techniques. So you can look for that. Wonderful, Libby. And again, we'll make sure to include links to all of Libby's resources and contacts in the podcast show notes and also in the YouTube description below. Well, Libby, thank you so much again for being on the show. I have learned so much from you and I'm sure our viewers and listeners have as well. Thank you. Well, thank you so much for having me. Thanks for all that you do. And to all of you out there, thank you so much for watching and listening as always and loving wellness for your pelvis. This is Dr. Susie. Until next time. Bye.

Starting point is 00:43:03 your feedback. Thanks again.

In Your Pants with Dr. Susie G - Ehlers-Danlos syndrome hypermobility, pelvic floor, and chronic pain

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