Hey, I'm Hypermobile and if you're listening to this, I'm
guessing that you might be too. Hi, my name is Alex and I'm your
Hypermobile host. And today we are talking about a
highly requested topic. We are talking about intimacy.
So if you're someone who, this would not be the right thing for
you to listen to right now. If you're someone who maybe is
not the right age or you're not feeling up for content that
would be a bit adult in nature, this is the time for you to go
check out one of my other episodes.
You can find all of them on YouTube, Spotify, iTunes and of
course you can find them on my website, A Hyperbole hq.com.
It has just all been redone. It is looking fantastic.
There are blog posts, there's a little shop, Go check it out.
There's actually a little quiz too, I think is super cute, but
go check it out. Let me know what you think.
And if you want to see archived episodes, that's a good place
too. But for today, we are talking
about sex. We're talking about sex because
somebody needs to talk about sex.
When you go and look up hypermobile elderdemol syndrome
and sex or look up like kind of searches online to try and see
what research has been done, what books has this been talked
about? And there's not much there.
So today you're going to get my thoughts on why I think
hyperbole. People have so many issues when
it comes to sex. Some of the common conditions
that aren't really talked about enough, that people think
they're alone in, but really they're actually quite common in
this patient population that have to do with hypermobility
and sex. So many big words today and I'm
going to talk you through two of the most common injuries
involving sex that I hear about from patients and some clinical
strategies that I use in terms of just reducing or sorry,
stopping those injuries from happening or just reducing the
ways in which they affect these people as well.
I do want to stress if you're looking for a community for an
awesome, super incredible online community, I cannot recommend
enough the Hypermobility HQ Discord.
It is a private membership so it's £9.99 per month and it is
for the scientifically minded hypermobile person to share
thoughts, ideas and strategies and just experiences on what
it's like to really live in a hypermobile body.
As I said already, the community is incredible.
I wasn't sure what it was going to be like when I made it, but
it has become my favorite corner of the Internet by far.
There are weekly lives with yours truly talking about all
kinds of subjects. Last week we talked about
disability and what does disability even mean And are all
hypermobile people disabled anyways?
That was a really good one. We also have guest speakers, we
have a monthly Q&A and we have special events.
So yeah, the Christmas party was awesome.
But anyways, if that interests you again, you can find more
info on my website, but without further delay.
Let's get into today's episode and one last delay, medical
disclaimer. Of course this is not medical
advice. If you are having a health issue
of any kind, I urge you to go speak directly to your medical
doctor regarding it, because we always want to be safe.
And here we're just talking about kind of some anatomy, some
Physiology, and we're talking about stuff that's for
informational purposes only. So if you're worried, please go
seek out appropriate medical Care.
Now, hypermobility and sex. Why is it such a problem?
Well, there's a couple things going on.
We have of course to think always this is, this is how my
brain works. I I hope it helps you.
But I always think about hypermobile, hypermobile people
and injuries in the context of mechanical issues.
So that's that wonky collagen that's kind of affecting things
from a structural perspective, that's those dislocations,
subluxations or partial dislocations and muscle injuries
and so on. That's that category.
But we also have of course the neurological component as well,
like for sex to you know, and there are many ways people can
have sex. They are like infinite ways.
But for a lot of different sexual acts to happen, there are
certain autonomic nervous system functions that take place.
So for example, in order for someone to have an erection,
there are certain things that have to go on with blood
pressure and blood flow direction, all these things.
And that's due that happens due to a component of your autonomic
nervous system. It's that kind of behind the
scenes. It's not like you can just will
it to happen magically. It's something which happens
kind of seemingly magically on its own until it doesn't.
And then it gets really, really frustrating for that individual
sometimes. And as well, of course, you have
to think of things from a inflammatory perspective too,
and there's a psychological component.
So hypermobile people have issues with often many of these
things, but let's get let's go 1 by 1, Let's keep it simple.
OK, So from a mechanical perspective, the problem with a
lot of different ways in which people have sex is that we have
irregular movements happening. We have people doing movements
that they haven't done ever or for a long time or that they
certainly don't do regularly. We have legs going up.
We have people lying and can kind of awkward positions.
And although that might be OK for someone with normal
connective tissue, for someone who's hyper mobile, the
consequences of doing that can be much worse.
Instead of having, I don't know, like shoulder pain for like a
couple days after maybe an adventurous experience with
their partner or partners, you can have someone who goes on to
have, like really serious and disabling neck pain for the rest
of their life following something that was seemingly
just a normal thing to do, right?
So we have the, the environment, we have the situation where we
can have injuries occur with more problematic consequences.
We also of course have activities which often require a
repetitive motion. So again there's a lot of
repetitive hand motions, repetitive hip motions.
We have a lot of repetitive things going on and in general I
find that that is the kind of highest risk type of activity
for a hypermobile body. These patients will often be
fine doing a movement once. You know, if I ask a patient say
with shoulder pain, say it's like a sports, you know, a
rotator cuff strain type presentation and I ask them to
raise their arm overhead once, they'll be fine.
They won't have any pain. But if they raise their arm
overhead like 50 times, that's when they start to get that
pain. It happens after that repetitive
motion. So a lot of sexual activities
that people do involve repetitive motions and that can
be really problematic for hypermobile people.
Of course, when we look at it from an autonomic nervous system
perspective, there is a lot of stuff that needs to happen in
sequence, in the right order, at the right time and in the right
way. We talked about erections
briefly to go talk, to talk about people with vaginas and
vulvas. Let's talk about arousal.
So people think that you are just supposed to magically
become all lubricated and like ready to go.
And that does not happen necessarily for everyone,
especially not for patients who are hyper mobile.
And that can have to do with issues involving dysautonomia.
So this means like negative, like it's not working so well.
Autonomia again refers to that component of your nervous system
that does all the magical things that are just supposed to
magically happen, like for example digestion of food.
I'm not telling my stomach to digest my food right now.
It's just doing it luckily, which is great.
But when it comes to arousal, not only do we have of course,
potentially that person with a vagina, they're not able to
produce that lubricative fluid. They're not producing that
arousal fluid and that's causing the tissue to be dry, which
again is going to increase their risk of injury potentially.
So that's leading. You know, that's a autonomic
nervous system issue, which is potentially leading to a
mechanical issue. But we also have on top of that
the potential for psychological harm from that.
That person might think, oh, my body should just get aroused.
That's the normal thing to do. Everyone else does it, like why?
Why should I not be able to do it?
It's the, it's the same thing with erections.
Again, people think, oh, I should just be able to have that
happen, but it's not happening for me.
And there's a lot of, I think feeling like a failure.
I think feeling like a physical failure is a huge problem when
it comes to being a hyper mobile person.
And it's something which we need to, I think, talk about more as
a community. I I hope that people understand
if there's one take away from this episode, it's that.
I promise you, you are not alone in whatever issue you're
experiencing involving what we're talking about today.
Now we talked about the mechanical issues, the
connective tissue and joint injuries and so on.
We talked about the autonomic nervous system and problems
regarding that stuff that's just supposed to happen that
sometimes doesn't happen. Now we are going to talk about
the inflammatory issues that can arise.
So a lot of hypermobile people, especially again people with
vaginas, they're going to have issues with things like chronic
yeast infections, chronic urinary tract infections.
These will be things often they'll have treated and they'll
come back and look at them treated again these kind of
chronic undulating infections. This happens partially because I
think that these patients are not being seen by medical
doctors who have a deep understanding of hypermobile
connective tissue and how it affects people who have these
infections. So hypermobile patient with for
example a yeast infection or thrush is being given standard
treatment which is not working for them when they need a an
appropriate treatment for their presentation.
Maybe that higher level of clinical management, but having
those types of issues makes that person potentially associate
their vagina and their vulva and that whole region with pain.
It also might make them feel like a a failure because they
can't be available for a penetrative sex or sex involving
those regions when their partner maybe wants them to if these
infections are near constant which they really can be for
some people. So we have that inflammatory
component as well and then on top of all that we have the
psychological component. So I will hear sometimes from
patients and from this community about people who feel like
failures because their partner wants to do certain sex acts,
They can't do them or they need to do them in a modified way and
their partner is not being what a a partner needs to be.
Their partner is not being supportive and loving and caring
and solution oriented. Instead, their partner is really
putting them down and really adding to that and that type of
interaction, I think long term, especially for patients who are
younger, sets them up to be in really, really harmful and
potentially even abusive relationship situations long
term because they've been told they're the problem, their body
is, you know, the failure. Like they're the they're the
whole issue in this relationship.
If only their body works better. If only they could do this, then
things would be all, you know, sunshine and roses.
And again, that's that's often not the case.
So there are all types of different ways that these issues
interact, and I think that's what makes it so challenging and
so nuanced when thinking about hypermobility and sex.
Now I also want to stress that as much as we can have like
these seemingly, like, you know, isolated issues, there are
actually a lot of medical terms and medical diagnosis for
conditions involving pain during sex.
So we talked about disparinia, which affects about 30% of the
population, was a statistic I read online.
Again, check the show notes, I'll put some research down
there. You can check check out my stats
and if I got anything wrong, you can e-mail me.
We also have things like Volvo, Dinia, Vestibulidinia and
Vaginismus. So again, when I hear about
these things from patients, they often think that they are the
only person that I've ever heard of who has this.
No. Vulvodynia and vaginismus are
common when I'm doing a medical history with patients who have
who have vaginas and vulvas. Again, I want to stress I'm not
a medical doctor, I'm a UK registered osteopath.
But it is part of my medical history.
When I talk with a patient to understand their health on a
more like holistic level, I want to know about their respiratory,
respiratory system, their cardiovascular system and even
their reproductive system because it's all connected as as
we all know too well. Anyways, vaginist Smiths and
vulvodynia affect approximately, I think statistics say about 10%
of the population. I suspect that number would be
much higher, but I think it's really under reported and under
researched. It's very difficult to find
research discussing hypermobility and sex.
And again, this is something which I think people should
research more and should talk about more because I know it
really is hurtful and upsetting for a lot of patients and the
community members I hear from who who are going through this
stuff as well. The reason why it's important to
get these things diagnosed is that there are sometimes
different treatment and management options out there.
There are there's a whole class of physiotherapist called listen
My Words called a pelvic floor physiotherapist.
And I do hear sometimes about patients who've had life
changing and wonderful experiences with their pelvic
floor physiotherapist. So there are options, but step
one of course is understanding what's going on.
So as well we need to think about other conditions which
aren't appreciated and aren't discussed enough.
One which in particular I think that we need more research on in
its relationship to hypermobility and heds and HSD
is Pyrenees disease. So that's PEYRON i.e.
Apostrophe S disease and this condition is when you get what
they refer to as a plaque. But when you read in in research
it's often also called scar tissue as well.
So I'm just going to use the word scar tissue here because it
fits more consistently with how I talk about injury and
hypermobile tissue. But we have scar tissue
formation within the penis which affects its ability to to shape,
to have an erection basically. It starts to have issues with
that because we have the tissue which needs to be kind of you
know be able to accommodate the shape of the erection.
We have scar tissue and injury there and that can be really,
really painful for people. Men make up a a small minority
of the symptomatic patients who are hyper mobile.
So again with A with a condition, let's say for example
heds it's autosomal dominance. So theoretically the split
should be 5050 in clinic I should see half males and half
females or half, half patients who are XY and half patients who
are XX ray theoretically. And of course there are other
versions I like. There are so many different
presentations we can have from chromosomes and different gender
identities and so on. But in theory it should be a
5050 split if we just look at it in that really simple way.
But I see a vast majority of females because they tend to be
the ones who are more symptomatic.
These people who are kind of have these estrogen dominant
hormonal profiles, these are the ones who are more symptomatic.
We'll do an episode on that probably in a month or two.
But I see a smaller percentage of people who are testosterone
dominant and I really think that although of course we need to
talk about the issues that affect these more estrogen
dominant patients, we need to not forget about the people who
are testosterone dominant and that the males who are affected
by these symptoms, you know they matter too.
So Pyrenees disease, it's not talked about enough.
There is no research that's been done as far as I can see
investigating a potential link to Heds or HSD.
But my hunch is that it's going to be something which is very
much correlated and maybe even a a comorbidity for some of these
pay for this particular group of hypermobile individuals who have
a penis. So it's something which we need
to talk about more. It's one of those conditions
again, where injury it's a it's a consequence of cumulative
injury. So the penis gets injured and
scar tissue forms and it's inappropriate scar tissue
formation and poor tissue healing, which again, if you
know anything about hypermobility, you're like this.
This sounds very similar to how injuries happen in other parts
of hypermobile bodies, but it's something where we certainly do
need more attention being brought to it and we need to
make sure that these patients are being identified early and
getting the right medical treatment and the right support.
Now moving on, we are going to talk about two issues that I
hear from commonly in patients and what I, you know, kind of
the strategies or thoughts I have about positively affecting
those issues. So when it comes to sex and
intimacy, the two most common issues that I hear about are hip
pain and wrist pain. Hip pain, obviously this is
particularly an issue for people who are lying on their back,
sometimes with their legs out. That can be, you know, really
challenging on the hip joints and on some of the connective
tissue there. And wrist pain for patients who
are putting their their body weight through their wrist.
Now, hip pain first. So hips are joints, which again
are under appreciated in the assessment of hypermobile
patients. The bait and scale does not
really look at hips. Some people argue that touching
the floor assesses hip mobility. I think it looks at arm length
more than hip mobility. But anyways, hips are not
appreciated enough in terms of the assessment of hypermobile
patients. In order to really assess
someone's hip from an from an orthopaedic perspective, that
patient needs to be lying on their back on the table.
You need to be moving the hip around.
You need to have done a lot and been trained in it.
And ideally of course you would have some medical imaging on top
of that. The reason I say that is because
as much as we can and do see issues with the connective
tissue in people's hips, the ligaments and the muscle and all
these different components, the tendons and so on, We also see
issues very actually quite commonly I would say with the
bones themselves. So there are different
anatomical presentations or conditions that people can have
where their their femur, their femur, their femur or the kind
of the the socket. We if we have a ball and socket
joint in the hip, we have the the ball which is the femur, the
socket which is acetamulum and the bones can be shaped
differently. So sometimes we have more of a a
Bony issue than a connective tissue issue.
Sometimes we have both, which makes a more challenging
management of that patient presenting with that injury.
But we need to know what's going on in the hip.
So if you're someone who's having pain during sex in your
hips, please speak to your appropriately qualified
healthcare provider because hopefully they will help you get
the right investigations and figure out that diagnosis for
you. But in terms of hip pain during
sex, what I think really causes this pain is the fact that the
patient has to just kind of hold their legs in that position.
And interestingly, it's often a position that I use to provoke
symptoms in a patient in clinic. So in my assessment as an
osteopath, I want to see, like, what makes the pain worse, what
makes the pain better. And when I take that patient's
hip into flexion, so I'm bringing their knee up toward
their chest and abduction. So I'm moving their knees
slightly out. That is often a range of motion,
which makes the patient's pain worse.
And funnily enough, if you can imagine lying on your back with
your knee coming up toward your chest and your your thigh going
slightly out, that is a position which a lot of people use
routinely when they have sex and holding it there.
I'm not surprised that that is causing pain for a lot of
people. So what can you do?
Step one is going to be to just have a lot of pillows, bolsters,
supports. I've talked about positions of
true rest in previous episodes. I was on the Book Gang podcast
actually recently talking about true rest and supported body
positions when reading. So you can go check that out as
well. I might try and link it in the
show notes too, but we want to find ways that you can
essentially prop up your body. So if you have pillows, if you
don't have pillows, you can use like folded up sweaters or
whatever, get stuff, shove those things outside your hips, okay,
you want them shut, you want them pressing up against your
lateral thigh. And by doing that you're
creating kind of a scaffolding so that your legs can then
relax. And that is going to really
reduce how much those symptoms in the hips are aggravated.
Most likely as well, if you have the budget for it or the space,
you can go buy all types of phone blocks.
There is a whole world of kit you can buy for having sex.
So you could go and say you know what, I want some wedges like,
you know, like those like slices of cheese I got, everyone knows
the wedges. You can get a wedge, basically a
wedge pillow. You could get two wedge cushions
and have your legs resting against those beautifully and
that could be really, really comfy for you.
Now I think a lot of people get self-conscious and they're like,
oh this sounds like so much set up.
This is so elaborate. Think back if, if you have like
a a partner that you're thinking of in mind, think back to when
you first met them. You probably spent hours getting
ready. You were probably like making
sure you're doing extra stuff in the shower.
You were probably, if you're putting on makeup, being really
precise in that you were probably like, I don't know,
looking for dust, like at the top of the door frame, like you
were going around your flat and making sure that it looked
perfect. It's OK to take that same amount
of attention in detail and continue to have that as a
component of your sex life. There's this idea that we just
have to be like ready to go at a moment's notice.
And that's not possible for people who have chronic
injuries, chronic illness and people who are disabled.
So I think drills really lean into that, that indulgence, like
indulge yourself, make it an event, make it fun, because
that's going to help you long term.
And I think it could be really fun for your partner too.
Now on top of that, if you are someone who's OK to look at more
elaborate things, there are different like chairs and
devices and things you can like hang from your ceiling, Be safe,
be safe. But it could be kind of fun to
look into the whole world. Have supported sex devices out
there. I might do a blog post on this.
If I do check it out, there'll be some good stuff in there.
Now on top of that, you can also look at braces and supports.
So something which can certainly affect pain during sex is
dysautonomia. So again, for patients who have
issues with regulating their their blood pressure and where
blood flow is going, some of these patients find compressive
garments helpful. They find like compressive
compression socks for example, really helpful.
What I would love to see, I don't know if it exists and I I
think I read about someone doing this online, so if I can find
the original post online I will. But you could take like a pair
of high waisted compression stockings and just, you know,
adjust the groin area if you needed to do that.
But that way you're keeping that compression going.
You're taking care of yourself, you're prioritizing your health
and your body, but you're still able to do what you want to do
with your partner potentially. So don't be shy to do, like I
call it, arts and crafts. If you have a problem and
there's a reasonable way you can have a solution, just go for it
and just make it like a style. Now on top of that, we talked
earlier about that knee being bent kind of toward the chest.
I find that typically patients are comfiest in what I call like
a, a mid range, right. So instead of having the knee up
as close to your chest, it might be helpful to have that kind of
knee further away and in more of a mid range flexion position.
And of course you could just be changing positions routinely as
well. Changing positions is a great
way to not be in any position for too long and that's going to
help to reduce your injury rate now.
But on top of that, if we look at wrist issues, you can
certainly look into braces. So again, the wrist pain I hear
about, it's kind of like a plank.
So you know, when people are doing a plank in like a Pilates
class and they get wrist pain, it's really common in patients
who are hypermobile because their risks, some of their
wrists are just really, really slender.
We see a lot of patients with arachnodactyly with different
changes in the hand and the wrist anatomy and their wrist is
not able to support their body weight or even part of their
body weight as well. These patients have excessive
ranges of motion. I was shocked.
I have very hypermobile risk and I was shocked when I realized
the normal range of motion and what I have and what I see in a
lot of a lot of my patients because it is far inside the
realms of what's of what is normal range of motion.
So having a little bit of extra support can be helpful.
Now, can you wear a medical brace in bed?
Yeah, of course you can. You can wear a medically
prescribed brace. There are all kinds you can talk
with your health care provider. You can get rigid braces, soft
braces there. There's a whole world of of
braces waiting out there for you should you want those or should
you need them. But you can also look at
alternative strategies. So one of my favourites.
Oh, I do have it here. You can get just like an Olympic
weightlifting wrist drop support.
So I got into these through my work with weightlifter patients
initially back when I was working primarily with sports
people. I'm gonna hold it up.
If you're watching my video, you can see it, but there's a strip
of fabric with just a little kind of piece of, I don't know,
like a shoelace on the end, almost like a fabric ribbon.
And you can just loop it around your wrist and that creates a
beautiful little brace. And you could do them in
different colors and have different ways of having
support. You can find all kinds online.
So that can be a really simple, cost effective brace.
You can get different ones, like I've seen them as low as kind of
like, I don't know, under 10 lbs and as high as like 20 lbs.
So these are awesome. You can find them on my Amazon
shop. You can also get, of course,
different kinds of tape. So some patients love tape, Some
patients hate tape by the people who hate tape, myself included.
And they normally hate tape because they get hives.
There can be like a sensory ick, but also they might just get a
rash, which is a very reasonable reason to hate tape.
But what we need to not forget about is there is tape out there
that adheres to itself. So you can get this tape in the
very kind of sports tape looking way.
It'll be kind of like that kind of tan color, you know, maybe
it's the look you want in your sex life.
Maybe it's not the look you want.
If it's not the look that you want, or if you can do with like
a different kind of support. There are different kinds of
tape. This, for example, is tape that
has a a different finish. It's kind of like a red glossy
finish and it adheres to itself and you can do all kinds of
things with this tape, including make, wrist braces.
So this might be a really good option.
And finally, of course, when you're looking at more
elaborate, elaborate, elaborate lingerie setups, there are so
many things going on. Corsets, hyperbole people, a lot
of them really like corsets. They like that support.
There are these little like I I call them gauntlets.
I don't know if there's a word for them.
I've seen them in like a window display before, but basically
they're like little wrist corsets.
Does that make any sense? But things that you lace up near
your wrist. Now if someone could design some
of those that are more supportive, that would be
awesome for hyper mobile people. And if they could look gorgeous
at the same time, that would be even better.
So the world is your oyster when it comes to supports and it's
all about taking those same principles that help you
throughout your day. Things like bracing or minimal
bracing. Things like finding positions of
of true rest or supported body positions and applying them to
your sex life. And I think it really comes to
just at the end of the day, accepting like your body is your
body and it has certain needs and it is going to help you long
term if you address those needs. And hopefully the people that
you're doing this with, if you're doing it with anyone, and
if you're not and you're just on your own, hey, that's great too.
Like indulge you, enjoy you, you know, make sure if you're on
your own, I hope that you're taking really good care of
yourself. But if you're with other people,
they should be caring about you and the needs of your body too.
If you need to stop, if you need to take a break, it's like just
like if you were doing a an exercise this program, like take
that break, there's no shame in that.
And then come back when you feel ready or come back to it another
day. I hope that you found this
discussion helpful. I hope that maybe it's got the
conversation rolling for some people, because hypermobile
people and people who have chronic health conditions, they
deserve and need to be able to have the best sex possible in my
opinion. And I hope that I've at least
given you some ideas from today's episode.
I can't wait to have you back next time.
I'm so happy to be back. I missed this and we'll catch
you later. Take care.
Bye.