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 all
about a highly, highly requested topic that I've put off talking
about for way too long. We're talking about
hypermobility and pregnancy, folks.
So hyperbolic pregnancy, you know, it's going to be complex.
And for this reason, I want to stress as always, that this is
not medical advice in any way, shape or form.
If you have a health issue that you're concerned about,
regardless of whether it relates to pregnancy or not, please be
sure to speak with your medical doctor as well.
I do want to stress that hyperbolic is a very sensitive
subject, right? There are some people who have
phobias of pregnancy and other things like that.
So if you're not feeling this episode, if this is not
something you're feeling up for today, or maybe up forever,
please. There are.
There are plenty of other amazing things out there you can
go listen to, including previous episodes of the Help I'm
Hypermobile podcast. And if you're someone who's
feeling alone in all this, you want a super awesome community
that you could be a part of. I do want to just give a shout
out to the Hypermobility HQ private membership.
It's a private membership run by yours truly, and we have weekly
lives guest speakers. We did a special event last
well, last week. It was just a few days ago
actually, which was absolutely brilliant.
If that interests you, check in the show now.
It's pretty awesome. Anyways, moving on, let's get
straight into today's episode Hypermobility and pregnancy.
It's complicated if you're looking.
Before we go, we go any further to it.
I don't want to say please check the show notes.
Seriously, for this episode, there are some great resources
out there. The British Journal of Midwifery
is an awesome resource. They have the best clinical
summary that I've ever seen on pregnancy, at least online in my
opinion. So please go read that.
If you're someone who's getting pregnant, like that's the one
thing. If I had to pick one thing for
you to read it is that article. You will find it like very
clearly marked in the show notes.
OK, that is my my one like best piece of advice as well.
Though of course there's Alexander Society and there's
also heads together, HDDS together.
So regardless of whether or not you have a diagnosis, because as
we know, a diagnosis is a privilege and many people with
HDDS do not have an HDDS diagnosis at the time of getting
pregnant or ever in some cases. That's a great resource
regardless of your diagnosis status.
So please go check it out. But now my thoughts, because
that's probably what you came here for.
So the structure of today's show, I I went back and forth,
you know, on this, right, because there's a lot of ways
that we could have talked about this.
We could have looked at it by body system.
We could have looked at it by like kind of progression of the
pregnancy and and stages. But what I'm going to do is
pretend like I'm sitting down with my best friend or if I had
a sister, like just sitting down.
And I'm going to give you a heart to heart on what I think
are the single most important, like topics that you understand
if you're hyper mobile and you either are pregnant or you're
thinking of getting pregnant. So topic one things can go well.
OK, so I know online, especially in social media, we see a lot of
negative experiences and these experiences do happen.
Scary things happen. There are, there is an increased
risk of some very scary things, like hemorrhage, for example,
which scares me. But we also have people who have
fairly unremarkable pregnancies. You know, if we use my mom for
an example against someone who was never diagnosed but she
loved being pregnant, she felt her best when she was pregnant.
And we do know that a certain percentage of hypermobile people
actually get on really well with pregnancy.
But the reality is that some people do not get on well with
pregnancy. Some people might be OK during
the pregnancy and horrible and the postpartum and the rest of
their lives potentially. And some people, the whole thing
sucks massively. OK, So we have to create space
and create room for everyone's experience.
OK, so if you're a hyperbole person and you had a great
pregnancy and you're feeling good now, like, hats off to you.
That's awesome. And if you're a hypermobile
person who is really, really worried about everything, and
maybe your mom had a bad pregnancy and went on to have a
lot of health issues later, then you're welcome here too.
OK, everyone's experience is welcome and we we do really see
that spectrum. This is the problem with all the
hypermobility stuff. We see a mixture of experience,
which is what makes it so confusing.
Now the example that I think of is like rolling a die.
So if we're going to roll a die, so there are 6 surfaces numbers
one through 6. Again, this is not based on any
statistics. OK, so do not try and say that
I'm making up statistics here, but let's pretend like for a
person who has no health issues at all and they get pregnant
that the chances of something bad happening are like a one out
of 6. So if they roll number 12345,
like all good and number six is going to be like something bad
happens for a hyper well person. I think the the risk of it's not
that. I think it's that the research
does suggest that the risk of some things happening which are
problematic is higher. But it doesn't mean that no
matter like what you roll on the die that you're going to
necessarily have a bad outcome. Some people will have good
outcomes, some people maybe some people will have those worst
outcomes. So to go back to that die
analogy, I think of the hypermobile person instead of
just having like #6 mean a bad outcome, they might have numbers
like 5 and six mean a bad outcome or 456 or whatever,
right? There's just an increased risk
of problems that that's all that means.
Again, there's some, there's there's controversy throughout
this entire podcast. Just if you hear me say
anything, just imagine that someone else has been like it's
controversial because it's all a bit controversial and the
research is mixed and there's not enough of it.
But when it comes to pregnancy classification in heds, again
based on statistics from America and and in America, there are
certain issues of course with the healthcare system and with
specifically obstetrics and labor and delivery related
health concerns and procedures and outcomes.
It is classified as a high risk pregnancy.
But whether heds and HSD are going to be classified as a high
risk pregnancy really depends on the country that you're from and
whether or not it will actually be a high risk pregnancy in
terms of you as an individual depends on that individual
symptom presentation. And This is why I love the
British Journal of Midwifery because they really make that
very clear. It does depend on the
individual. However, what frustrated me a
bit in in my research and then what I was looking at is how
often there's this talk of like assemble your team of healthcare
providers because how is anyone supposed to get a team of
healthcare providers including like an anesthesiologist and a
cardiologist and all these other things when you don't even have
a diagnosis, right. So there's I feel like there's a
a deep conflict between the advice which is online from some
really high quality sources with the realities of what it's like
to actually be a hyper mobile patient.
So on that note, we're going to start to focus on things that
are more in your control or things that you can do even
potentially without a diagnosis. OK.
And we're going to start at the very beginning.
We're going to start maybe you're someone in your 20s and
you're thinking of having a child in a few years or
whatever, we're going to talk preconception.
So I think that pregnancy really needs to be appreciated for the
extremely physically, challengingly physically
challenging. I'm losing my words
psychologically challenging and just like complex event that it
is. If I was someone like pre
pregnancy thinking about all this stuff, I would be wanting
to make sure that a few things were in order.
Firstly I would want some blood work done.
I'd like to know my vitamin D levels, maybe my B vitamin
levels. We know that quite a few
hypermobile people seem to have issues with folate in particular
that's B9. I think it's sensible to speak
with your medical doctor about maybe taking a version of folate
called methylated folate simply because there is some research
that suggests that there are some people who are hyper mobile
who have issues actually metabolizing and absorbing the
folate that they take. So they might be taking a
regular like folic acid supplement, but just because
they're taking it doesn't mean it's going in.
And because folate affects the development of something called
the the notochord, so it affects what goes on to be the the
baby's neurological system long term.
And it happened so early in in the whole development, the whole
pregnancy is happening very, very, very early.
For that reason, I would want to make sure that I had had my B
vitamin levels checked and that I was taking a A supplement that
was appropriate for me. And as far as I know, there are
no drawbacks to taking a methylated folate supplement
because all that's happened there is that a methyl group has
been added to the folic acid, which just means that if you're
someone whose body struggles to do that, it's already been done
for you. It's like buying I buy chopped
frozen onions because I'm tired and I don't want to chop onions.
It's kind of just like having that that step taken care of and
the price difference is there, but it's not significant.
So I think it's something that if more people were aware of,
they would probably want to do. So speak to your medical doctor
about that as well. I would be wanting to be in the
best physical health possible, and this is hard.
This is so hard with HDS and HSD and undiagnosed symptomatic
hypermobility. But I would want to make sure
that my muscles and joints were feeling as good as they could
possibly be. So if that meant trying to find
a physio who I felt comfortable with or osteopath or
chiropractor or whatever, if that meant maybe trying to do
some safe and strategic exercise, maybe even some
strength building. If you have the, you know, the
time scale for that, like you're a year or two years out from
pregnancy, that's the type of thing I would really be wanting
to focus on. OK And and doing that safely
because the more physically, well you can get pre pregnancy,
the better able your body is to accommodate the stress like the
stressful event of being pregnant.
So I would want to, I would want to do prehab, that's what we
call it in like the physio land, right.
I want to do prehab for the pregnancy.
Let's normalize prehab for pregnancy in heds and HSD.
But that's what I'd be doing as well.
I would want to make, I'd want to kind of assess, you know,
look at my options and think about my situation.
I would be wanting to think about OK is getting pregnant the
right choice for me? There are different ways that
people can live their lives. Not having children is a a very
valid choice and something that I think we're going to keep
seeing more people consider just because it's I think we're kind
of like the first generation where it's becoming semi
normalized to some extent. But I would want to say you, you
know how can I understand what's really involved with with
pregnancy and with being a parent.
And this is something I've thought carefully about.
You have to think of resources in terms of community or family.
So let's say that something did happen during pregnancy or
during postpartum or whatever. Do you have a support network
of, like, family or really close friends or someone who can help
care for your baby? What's your situation with your
partner, partners, or whatever? Like, like, do you have anyone
available to you to help out or are you going to be on your own?
Because that changes things quite a bit.
I think it's also important to think in terms of financial
resources. So let's say for example, you're
someone you don't have a lot of family and you don't have, you
know, like a close community network, but maybe you can
afford to have some type of like a nanny assistance in those
early days that will make a difference.
Let's say you're someone living in, I think it's the
Netherlands. Is it the Netherlands?
I can't remember, but let's say you live in a country where they
have really good postpartum support services.
I think it's the Netherlands where you get like 8 days of
someone just living in your house, helping with laundry and
cooking and cleaning and baby stuff that might like impact.
You know how things go. So look at your life and see
like what support do I have. And that's something which I
think not enough people consider.
It's something which can be changed.
In some instances, it's something which maybe moving to
a different city can affect it or planning your life around it
or just, you know, taking a moment to check in with what's
accessible to you and it's something which might help you
make the decision that's right for you.
And it's not a fun discussion, but I think it's an important
discussion to have. Additionally, I think it's
extremely important to think of the possibility of what if
something happens down the line. So something I see in the
patients I work with is there will be patients who have more
pronounced presentations of symptoms, right.
There are patients who rely on mobility AIDS and who will have
you know who will not be able to work a regular example, a
regular schedule for example. And there are some patients who
kind of are able to work a regular schedule and have a more
minimal presentation or are able to better cope with those
symptoms or have maybe more support networks and so on.
And I think it's really important to understand with
this stuff that you can be someone who identifies as well,
or you can be someone who is relatively well, and then
something can happen in your life, heaven forbid, like an
infection or what not, right? And that can be the thing which
kind of makes you less well than you have been.
So if you're someone out there listening to this being like,
you know what? I got it.
I have all my my good physio, I have my whatever, all my
supports in place. I'm doing great.
It's just always so important to remember that feeling really
good now doesn't necessarily mean feeling great in five years
or 10 years or 20 years or however long we have to be a
parent for life. But I I hear that.
I hear that most of the work is in the first, like, I don't
know, 20 years or so. I don't have any children
myself, by the way. I'm I'm just a cat mom anyways.
In terms of other things pre pregnancy, I'm a big fan of
people improving their cardiovascular fitness.
I think it makes a huge difference in terms of
Dyshotonomia. So dysautonomia refers to
dysfunction of something called the autonomic nervous system.
It controls your blood pressure and your heart rate and it
controls your digestion and so and so on, right.
If you want to read more about steady state training, I do have
an exercise guide on it. Again, I'm not saying
necessarily it's safe for you, please speak with your medical
doctor if needed. But you can find that in the
show notes as well. And the reason for this, of
course is that we have changes in blood volume and the demands
and stresses placed on the cardiovascular system during
pregnancy. In terms of one last
preconception thing, we need to think about potentially issues
with conceiving. So here we're coming to a place
where the research is quite mixed again, but it seems like
there is some research to suggest that hypermobile people
might have issues with getting pregnant Again.
Hopefully more research will be done on this in future to give
us a more conclusive answer. But my gut feeling based on what
I see in my patients is that this is likely due to
undiagnosed polycystic ovarian syndrome.
So polycystic ovarian syndrome is a condition where the person
who's ovulating is not ovulating at regular intervals are not
able to ovulate reliably at all. In some cases they have signs
and features of what's called hercetism.
So they're like growing hair on different parts of their bodies.
They're they're having a lot of things go on.
It's a whole thing. We'll do a PCOS episode.
I've actually kind of done an episode on it.
I did one on period issues, so you might want to go check that
out. Anyways, I think that probably
quite a few of the people who are having issues conceiving are
people who are having issues with undiagnosed PCOS.
So if you're someone in that category, look up the diagnostic
criteria, speak with your healthcare provider, and make
sure that these things aren't being missed.
Something that I'm a fan of as someone who I was told I was too
skinny to have PCOS by the way, which is weird because weight is
nowhere in the diagnostic criteria and I've had 185 day
long cycles. But anyways, something that I
would recommend doing and that I do personally, is called the
symptothermal method. This will only work if you're
not on hormonal birth control, but it's where you basically
track your cycle very, very closely using basal body
temperature and cervical fluid readings.
And this is a cool way to improve your body literacy.
You get to learn like am I ovulating?
When am I ovulating? How long is my luteal phase?
A short luteal phase can be a reason that people really
struggle to maintain a pregnancy, so it will give you a
wealth of information. If you have time and wish to
learn about it, I'll put a resource in the show notes.
Again, this is going to be a long show notes, but I will put
a resource in there for you. It's a 12 page PDF which kind of
outlines all the rules. I'll try and find a couple
studies. Again, this method, when it
comes to identifying ovulation is extremely accurate.
It's accurate like 90% plus, I think 95% plus in terms of
identifying the ovulation and whether or not it's happened and
the fertile window ±3 days. So this is something which may
be for you. I know it's certainly for me,
but just because something's for me doesn't mean it's for you.
Now I think we covered everything pre pregnancy, Let's
talk about pregnancy. So when it comes to pregnancy, I
think it's really important to appreciate that heds certainly
and research suggests that HSD also, although there is a little
bit of controversy here because we can't have anything
hypermobility related without controversy.
But these are autosomal dominant conditions, and with HDS for
certain we can say that it is inherited in an autosomal
dominant pattern. What does this mean?
Autosomal simply means that the gene is not located on the sex
chromosome. So you have different you have a
certain number of chromosomes in your body and there are some
that are particularly for sex, like the X&Y ones.
It's not on those ones okay, it's on one of the other ones.
That's all autosomal means. Dominant means that if one
parent has the gene and their child, they reproduce with
someone else and they have a child.
It means that there's a 50% chance that the child will have
that condition, because if you have one copy of the gene, so
you get 1 gene from the from one parent and you get 1 gene from
the other. If you have that gene, there is
a you will have the condition and there's a 50% chance that
you will get that gene because the affected parent will have
two genes, if that makes sense. So anyways, that is in summary a
very brief explanation of heds genetic inheritance.
Now where this gets complicated is we don't know what gene or
genes cause heds. There is research that's
emerging. It's very, very exciting.
But at the time of filming and recording this, we do not know
what gene or genes cause heds. So in summary, I think the point
that people get confused about is that we can, through studies
identify the inheritance pattern of the condition.
It's what Mandela did with peas back in the day.
You know, are the peas like, I don't know, yellow color or
green color or whatever. And it's what we've done with
HDS. There have been studies that
look at the inheritance patterns of HDS, which have found that
it's autosomal dominant, but we do not know the exact genes and
because of this, it means that you cannot have screening for
HDS and HSD. It is not an option.
Now whether or not you should is an entirely different subject
for an entirely different episode in the distant, distant
future when we feel like doing a super super complex and
controversial topic. But there are there's no genetic
screening if that's something you were curious about.
It does not exist. And I do want to also say there
are a lot of hypermobile people who are awesome and who very
much like being here. So even if that existed, it
might not be something which you would want to do.
And that's all I'm going to say on that for right now.
Anyways, moving on. When it comes to pregnancy
itself, there are some people who will get pregnant, you know,
physically, like in their body, like the kind of old fashioned
way, if we call it that. There's of course also things
like surrogacy or other ways of getting pregnant.
Again, there are ethical issues with that.
There's so many ethical issues with pregnancy.
This is why I was up all night stressing about this episode.
OK, But there is a world of options that you should talk
with your medical doctor about if you are concerned.
But let's say that you're someone who is getting pregnant
yourself. What do you need to think about?
Well, we need to think about a few things.
Firstly, we want to think about the mechanical stressors on the
body. So babies have weight.
There's like the placenta, which is a whole thing enough.
It's in and of itself. There's changes in the mothers,
her musculoskeletal system. There are hormones like
relaxing, which make the tissue a bit stretchier.
So there's a lot going on from a musculoskeletal and a mechanical
perspective. The most common issues which
I've seen in my patients are things like pelvic girdle pain,
so issues with the pubic symphasis, which is a little
joint right in the front of your pelvis, way down low.
There are also issues with things like hip pain and hip
issues and hip dislocations or subluxations, and also with knee
issues as well. I see a lot of knee pain too.
Carpal tunnel syndrome's another big one, and we're seeing issues
because that connective tissue is becoming more stretchy
throughout the pregnancy. That relaxing is affecting it,
and there are other hormones as well, but to keep it simple,
we're just going to talk about relaxing.
There's also the the weight of that baby in the position and
that is changing the the mother's posture.
It's changing how like the load her body has to cope with.
It's it's a lot to carry a child physically just in terms of
terms of literally just like carrying it physically, like
that's a lot of stress as well. We start to see changes in terms
of some of the organs that the, the developing fetus puts
pressure on. So the bladder is a big one.
Of course, a lot of hypermobile people have issues with
incontinence. People report kind of having
peed themselves a little bit, like even even as children or as
teens, because the the bladder is a sack of connective tissue
with a tube of connective tissue that leads to the exit, right.
So we have a connective tissue situation which we're then
putting a baby on top of, which is going to put different
stressors on it. We also have course have issues
with things like reflux. So a lot of people who had
gastroesophageal reflux disease pre pregnancy, they're going to
start to have worsening symptoms potentially.
We also have issues of course with things like morning
sickness as it's called and in cases which are severe
Hypermesis gravidarum. For those of you who don't know,
hypermesis gravidarum or HG is a condition where the mother is
unable to keep food down and basically vomiting profusely.
And that is something which can be very problematic, especially
in someone who's hypermobile, not even just from a nutritional
perspective, but also from a musculoskeletal perspective.
This is something I couldn't really find any research on
online, but I know that being sick, like throwing up, it makes
my ribs hurt, and my expectation is that it would make
hypermobile mother with HGO, it would make her ribs hurt too.
So we have a lot of different considerations there as well.
Of course we have to think about the dysautonomia.
So we mentioned it before. One of the more common or should
I say more well known now forms of dysautonomia is POTS.
So it's postural orthostatic tachycardia syndrome.
There are other kinds of orthostatic intolerance too,
like orthostatic hypotension, but there are people who are
going to have issues with their cardiovascular system.
We then put a baby in there and their blood volume increases.
And the cool thing is, actually for people with POTS, research
does seem to suggest that it's going to be a bit of a benefit
in some ways because they're just going to have a greater
blood volume, which is going to help things function a bit
better for a period of time until of course, they give birth
and then that changes everything.
But there, that doesn't mean that there are people with POTS
who are going to necessarily feel better.
There are people who feel worse. So again, it's a very, very
mixed bag. That being said, the the change
in blood volume means that we need to think about that
cardiovascular system, something which you certainly might want
to speak with your medical doctor about.
I know I would would be wearing compression socks from like day
one. There is an increase in things
like varicose veins in in different places in the lower
extremity and throughout the body.
And I know that I would be wanting to give that external
support to my body should I get pregnant.
So whereas some mums might wait till later long in the pregnancy
to add in compression stockings, I think that for someone who's
hypermobile, it can certainly make sense to make these
interventions earlier and more precisely.
So speak with your medical doctor about that.
In terms of other things as well, I think it's really
important to consider talking about issues early.
The sooner you identify issues and the sooner you speak with
people about them, the more options you have theoretically.
So when we get, you know, we've kind of let's just let's pretend
like we've got through pregnancy.
I haven't really touched on increased risks of bleeding
throughout pregnancy and increased risks of potentially
cervix issues and so on, but those do happen, OK, And I'll
try and put them in a blog post. But when we get to pregnancy,
sorry to labor and delivery itself, OK, we need to make sure
that that patient ideally has thought about what they want and
has spoken with people beforehand.
Now I know there are some people out there who are just going to
be like, you know what, I don't want to even think about it.
I am not going to think about it.
And that's cool. You do you.
OK, but if I had a friend who was hyper mobile, I would be
telling her, like, please speak with your medical doctor about
your concerns, your wishes, things that you're worried about
and so on. Right.
So that this is just like the theme of this episode doesn't
mean you have to do it just means it's what I think is
helpful. So when it comes to labour and
delivery, one thing which we all need to talk about is pain
management. So if you're someone who's
hypermobile, you might have noticed.
I think that's not everyone, because why would it be?
That would be too easy. But you might have noticed that
you have issues with local anaesthetic.
A great example of this is if you're at the dentist.
So some hypermobile people will not respond to numbing
injections at all. Some people will respond a
little bit, but they need more or they need it to be topped up
more regularly. And theoretically, there's a
group as well who will respond fairly normally.
So if you're someone who has had issues with local anaesthetic
previously, and I would say just if you're someone who's
hypermobile regardless, it might be worth talking with your
medical team about things like epidurals and things that like
other forms of local anaesthetic, because they won't
always work or they won't always work in the same way in people
who are hypermobile. Again, I'll try and put all my
research in the show notes, but when it comes to epidurals, if
it was me and I was going in, I was pregnant and I was
approaching, you know, giving birth.
I would want to make sure that I understood all my options and
knew of options other than epidural.
Because I think the person who hasn't thought about pregnancy
as much as I have, perhaps they think, oh don't worry, if I'm in
too much pain, I'll get an epidural and it will work and
it's not that simple, especially right from about people.
Now I would also want be wanting to think about things like
nitrous oxide gas that's available to pregnant mothers in
the the UK. It's something again where right
now in the uki, don't know if you saw this in the in the news.
I think the Guardian did an article on this.
But there is a shortage of nitrous oxide because they found
that on some of the hospital wards that have poor ventilation
in the UK, which is more common than you would think that the
midwives and other staff on those wards were breathing in
too much of this nitrous oxide or whatever they call it, like
gas air, I think they call it here anyways.
They're breathing in too much of that and it was causing them to
potentially have issues with B, vitamin malabsorption and other
things. So they have now stopped making
available nitrous oxide on in some hospitals entirely.
So if that was a pain management option that a person who was
going to give birth was relying on, they might be surprised to
to go give birth and not have that there.
So it might help if you like even look at the hospitals which
are an option to you or call them or try and contact them
just to know what the menu of pain management options is.
And yeah, I just want to say to the the gas air or whatever they
call it here it's a mixture basically of nitrous oxide and
oxygen and you get a little mask and the patient can self
administer it. And I think even if it doesn't
provide, obviously it doesn't provide the same level of pain
relief as other interventions. It's something which can help
and which I think people, especially in the UK, where I I
know it is quite a common option, they go into their
delivery thinking that they will have that to rely on and to not
have that, there would be quite a shock.
Now, in terms of other things that you might want your health
team to be aware of or whoever's helping you to give birth to
this, in fact, this baby, you would want them to probably be
aware of some of the issues surrounding episiotomy and
hypermobility. So episiotomy refers to
incisions that are made to help with the vaginal delivery of the
baby. There are different types of
episiotomy. Is there somewhere they go kind
of forward back there, somewhere they go more out to the side.
Based on my research, I know that I certainly would want to
avoid a forward and back one, but even the ones that go out to
the side because of how they affect the thigh can have huge
problems. There is some, I think there was
1 research paper that suggested that some patients would
actually have better outcomes from AC section than an
episiotomy just simply because of the risk of prolapse long
term. So this is a talk and this is
like the thing. I don't even know how this would
happen because a lot of people who are hypermobile, they don't
have a diagnosis, they don't have this team.
I I watched this lecture this morning and there was like this
at the the last slide was like find your healthcare team and
talk to them. They don't have a team.
They're just getting whoever's at the hospital on the day.
So I don't know how this would actually work but what I would
do maybe is bring a little like a folder with me.
Like what I would do maybe is bring a little folder with me
and I would be like, here's what I would like you to know, person
who is here and helping me hopefully safely deliver my my
baby. But I would want them to
understand that I am extremely concerned about risk of prolapse
following an episiotomy because of hyperbolic connective tissue.
It basically means that wounds don't heal as well as they
should sometimes. And people, even if they haven't
given birth vaginally, they are at risk of having things like
prolapse, which is the medical term for organs moving
downwards, rectal prolapse, uterine prolapse, vaginal
prolapse. Things move down when you do not
want them to move down. So I would really want the
person who is helping me deliver my baby to know that I'm very
sensitive about my pelvic floor. On that note, going back to what
we said earlier about prehab, you could also like look for
some pelvic floor physiotherapy. I think that's a great thing to
do. But again, it's all up to you.
It's your pregnancy and your body.
Now. I would also want them to be
aware about moving my body around.
I had a patient the other week tell me that her thought she was
lying down on her back, kind of in a reclined position on her
back giving birth to her baby. And the person who was there,
the the midwife or I don't know if it was a medical doctor or
whatever they like yanked back on her leg.
I would not want someone doing that to my legs.
So I don't know if I'd be the the favorite patient ever or the
least favorite patient, but I would just want my partner
there. Or like I would just have a a
big document with me explaining like do not aggressively move my
joints. Listen to me if I tell you
something, if I tell you I'm in pain and I can feel something,
it doesn't mean it's in my head. It means that the pain relief
you've given me has not worked because hyper mobile connective
tissue people problems. So please listen to me.
I think the the big thing here is just patience being listened
to. That's what will save lives and
that's what will make everyone's pregnancy experience better.
But anyways, carrying on, I would want to think about
different positions. So I'd be very aware that
positions that work for other people might not work for me.
I would also be aware of the fact that there's an increased
risk of what's called precipitous birth or I think
it's precipitous labor actually. But basically what this means is
that from the onset of contractions to baby, like being
born is 3 to 5 hours, which is a short window and it can really I
think catch a lot of healthcare professionals off guard.
So knowing also that my mom had that happen with two
pregnancies, I would want my healthcare team to know, you
know, it might look like it's going slow, it's it's often kind
of like a slow progression of the the pre, you know, pre
actual contraction stuff. But I would say like once we get
there, it might go very, very fast.
Please, please be aware of that as well.
It might affect things like making sure that you are
prepared for a home birth. Not that I'm advocating that,
but just in case it happens. And this is one of the
suggestions, actually, I think I saw it in the British Journal of
Midwifery. But they were saying, you know,
just having a partner or, you know, yourself being prepared
for, like what a home birth might entail.
It just takes away a bit of the risk, right?
A prepared home birth is better than a not prepared home birth.
So if you can make sure that you have some of the sterile stuff
required to make sure that if you're in that situation that
you could manage that can just take a one stress, one worry
that you have and just decrease it.
A lot of this at the end of the day is looking at risk
management and potential benefit, kind of like a risk
benefit analysis and learning about a home birth is something
which it's not going to hurt you and it might help you.
So that's the kind of thing that I would do personally when it
comes as well to baby actually being delivered and coming out,
there is an increased risk in people who are hyper mobile of
baby not being positioned in the right way.
So we have to remember giving birth is not just a one person
thing, it's a two person thing. There's the mom and the baby.
So, and again, when I say mom, I want to just stress, I didn't
say this earlier. I'm including everyone.
Anyone can be a mom. I don't care like what your
gender identity is, or if you don't even identify as a gender,
like anyone who is giving birth. This applies to you.
OK, but the person who's giving birth, they might have the baby,
which is just not cooperating. There's a 50% chance their baby
is hypermobile. I don't know if studies have
actually been done looking. It'll be really hard to do
because how do we know? Like in utero, if the baby's
hypermobile or not? They'd have to almost be like
retrospective studies. But the the baby might just not
be playing ball. It might be in a really annoying
position and that might be a thing.
Even if the mum is doing great, baby can cause problems.
So This is why pregnancy is such a complicated and stressful
thing because it's not just a one person situation, it's a 2
two person situation right now. Being aware that baby might be
positioned not as well I think helps patients prepare too for
the reality that they might not get the birth experience that
they want. They might have to have AC
section right or they they're need, they might not get the
water birth or whatever that they were hoping for because of
the baby at the end of the day. So just having that expectation
management in mind and again this all of this stuff goes back
to basic things we talked about being listened to earlier and
believed we're now going to talk about informed consent.
Like literally if people just have their risks and benefits
explained to them. It's the the gold standard for
informed consent is called a brand statement, Benefits,
risks, alternatives and nothing. So what are the benefits of
giving birth vaginally? What are the risks for this
patient of giving birth vaginally?
What are the alternatives? Could they have a C-section or
do something else? And what happens if we do
nothing? You don't have a choice to do
nothing when they're giving birth.
But you know what I mean? Like, we could just, if it's a
shoulder injury, what happens if they don't have any treatment at
all? We just leave them and do
nothing at all, right? Like a brand statement.
We just need more brand statements.
That's all we need in this world.
Not not all, but it will be a good start anyways when it comes
to people actually giving birth. We talked a bit about baby
positioning problems, but we also need to talk a little bit
about the actual tissue down there.
So there does seem to be this increased risk of precipitous
labor leading to really, really fast births.
But there does also seem to be so there's an increased risk
with episiotomy. So when an episiotomy is made,
that incision, again theoretically is made to help
deliver baby. I think that if it was me giving
birth, certainly I would want to be allowed within safe, always
being safe, right? But I'd want to be allowed to
give birth to that baby slowly and in a controlled way.
And I would really want to have good support and coaching on
like not pushing too fast and trying to avoid pelvic tears.
Like other than healthy baby, healthy mom.
My, my second biggest goal would be not tearing the pelvic floor
because that would be really helpful.
But yeah, physiotomies and awareness of tearing and not
pushing too fast. I think that's a really, really
important thing to make sure every hypermobile person is
aware of as well. When it comes to medication,
both during labor and delivery and any kind of, you know,
drugs, people are being given or taken or pain management as well
as throughout the pregnancy. I should have said this earlier,
people need to talk to their medical doctors because they
might need a medication to help manage their symptoms that maybe
hasn't been studied as much as would be ideal, but we need to
think of what's safe and appropriate for that patient.
And again, we don't have the studies on pregnancy that we
need because researchers don't like studying on people who are
pregnant because there's a risk of course of potential harm
depending on how the study is structured and and how it's
actually carried out. So it's something that we've
shield away from for way too long.
There are books written on this and it's something that
hopefully will is changing and hopefully will continue to
change in future. But for now it really does come
down to risk management and looking at the risk benefit
ratio by that patient's medical doctor at the end of the day.
Now in terms of AC section, I think again it's really
important to be aware of the benefits.
In some instances here we've had the phrase for a while.
I think like breast is best and I I hate this, this is best is
this or worst. Whatever is best for the patient
is what's best for the patient. If you're a hypermobile person
and AC section is best for you, that's cool, that's good, that's
great. I'm happy you have good
healthcare. If you're a hypermobile person
and you feel like a vaginal birth is best for you, again
that's great in terms of the guidance.
Research does suggest, and guidance does suggest that there
unless there is a clear reason why someone with HTTS should not
give birth vaginally, then that should be ideally probably the
best option. But again, every single
patient's different now when it comes to the postpartum period.
This is a very, very problematic situation because we have
someone who not only has all of the chronic health issues they
had before, they have them being exacerbated or them being
complicated by the postpartum hormonal chaos, mechanical
chaos. Like there's a sudden change in
your body and the stresses of a newborn, which I don't know
personally, but I've heard they don't sleep so well at the
beginning and that they need to be fed very often anyways.
You have a baby to care for. Theoretically, if you've made
this through, made it through this.
If you have family members, you can reach out to your friends or
community or whatever, like do that.
I think that a lot of hypermobile people, because
they've had to struggle for so long, I think they almost hold
back or they're shy to ask for help.
Like ask for that help because you probably have people who
care about you more than you think.
So reach out, even if it's just people like helping with some
food prep or maybe helping with some cleaning.
Like I think that we see a lot of kind of hyper independence
part, maybe because of a neurodivergent component of all
this stuff. But reach out to your support
network even if you think you don't have one.
You might be surprised as well. We see a lot of issues with
dismissal of muscle and joint pain.
I cannot tell you how many patients I've had see me who
it's like years after their last pregnancy.
And they tell me, oh, I developed plantar fasciitis
during the pregnancy and postpartum, but the medical
doctor told me it was just normal and it would go away.
And now that it's been 2 years, they say that it's chronic and I
have pain just because I'm like, old and now I have to live with
it or whatever. That's ridiculous, right?
Like, we need to look at musculoskeletal injuries
appropriately. We need to stop just accepting
that someone who's given birth is necessarily going to have
pain that is not treatable, right?
We need, we need to take these injuries really seriously.
So I think that that's something I really want to emphasize is if
you're someone who is looking to a pregnancy in the future and
thinking about the postpartum period, or you're someone who's
listening to this, who is postpartum?
Your body still matters, your health still matters.
And ideally you will be able to access healthcare providers who
will actually help you with this.
OK, so don't live with pain if don't live with excessive pain
if you don't have to. I know that part of having HDS
and HSD is chronic pain, but we want to try and just minimize it
as much as we can right? As well I think we really need
to appreciate the psychological changes and and stressors which
can happen. Postpartum depression is real
and scary and there are other psychological conditions which
can occur and research does suggest I believe that people
who have Heds and HSD are at a greater risk of having issues
like postpartum depression. So again, you might find it
helpful to if you can afford it or if you can manage it through
a healthcare plan that you have. Schedule things like therapy in
advance. I know if I was giving birth
because I don't have my mom around, like I I just get sad at
the idea of it, right? So I know that I'm someone who
probably would be high risk for postpartum depression and I
would be wanting the support of a mental health worker, probably
maybe pre pregnancy, certainly during the pregnancy and
absolutely after the pregnancy. So try to anticipate those
issues. If you can't do it on your own,
try and work with someone who can help you.
But anticipating issues or vulnerabilities like that they
are, they can help you really have positive outcomes where
otherwise we might be going down a path where we start to have
some negative outcomes and some harm happened to that
individual. So think about you, think what
you're worried about and appreciate there might be a
reason why you're worried about it and why you're stressed as
well in terms of postpartum issues.
Breastfeeding. Again, nothing is.
As I like to say, Nothing is good, nothing is bad, and
everything's complicated. So if you are someone who is
struggling to breastfeed, again, breastfeeding is quite a complex
thing. It requires the person with the
breast to be doing something, the person with the baby, like
sorry, the baby to be doing things, and latching.
There's a whole bunch of complications that can occur.
There are things like tongue ties, which again, I don't think
we have research on the prevalence of tongue ties.
And people with HDS and HSDI do wonder if it could be higher
though. But who knows.
But anyways, it's a whole thing. If you can find a magical heds
lactation consultant specialist, please let me know.
I will send them many patients, but I might see that myself one
day. But when it comes to
breastfeeding, it's very challenging mechanically.
You want to make sure you're in the confused position.
Possible you want to make sure you're supported, prop up the
tissues that you can, get all the pillows, all the supports,
and try to make sure that your body is not being hurt as you
feed your baby. But if you can't breastfeed,
that is why we have bottle feeding.
So again, find the option that's right for you.
And ideally you would certainly have that magical support team
which all of the presentations that I've seen talk about but
yet I don't hear about from most of my patients.
One last thing I I want to say actually briefly, I think just
about this whole thing, if we kind of look at what we've
talked about today is almost, it's almost like having a plan,
right? But it's not just even like a
birth plan. It's like a a pregnancy, birth
and postpartum plan. There's a lot of some
controversy, I should say, around planning.
Some people say that, like, if they saw me or if they were
thinking, you know, looking at how I think if I told my medical
doctor, like, yeah, I have like a a pregnancy plan, a labor and
delivery plan, a postpartum plan to be like, oh, this patients
anxious. They're overthinking.
They're catastrophizing. I disagree with them.
I think that I'm being thoughtful and that I'm
anticipating problems or concerns that I have and that
I'm really trying to find solutions and treatment
strategies to those. So I think there's so much of
putting patients down. And if you're someone who finds
thinking about things beneficial, maybe you're someone
like me who's been an overthinker your whole life.
This can be a really good opportunity for you to look at
and assess and identify your options and find what works for
you. And if you have a medical team
that's telling you, oh you worry too much, stop stressing, blah
blah blah. They're probably not like the
best healthcare providers, and if you can find different
healthcare providers, do that. If you can't, then you just try
to make it work. But I think that at the end of
the day thinking about these things can help to prevent harm.
Like for example using a personal story.
I used to be very keen on the idea of a home birth.
I I was like, I think they call it crunchy, but like I was at
back in the day like a very much that way.
We're talking like a decade plus ago, right.
And I used to think like, oh, I would not want to go to a
hospital for a a birthright. I want to do it at home with
like, whatever, right. Not saying home births are bad.
You can again there are awesome midwife support services in some
parts of the UK You do what's right for you.
That's the whole point of this episode.
But speaking about myself, when I learned more about, for
example, the risk of things like hemorrhage, like put, you know,
after the baby's been born, you have to the whole placenta
delivery thing. When I've learned about how fast
hemorrhage can happen and how quick and how scary and life
threatening it can be, that was something which made me say, you
know what? I want to give birth in a
hospital if I ever have a baby. When I learned about the fact
that things like placenta accreta, which is a condition
where the placenta doesn't form quite how it should, which can
affect again we can have bleeding issues from now which
are very scary and in some instances is life threatening.
When I learned about that, I was like, you know what, I
definitely want to give birth in a hospital.
It has some facilities for these kinds of emergencies, just
because for me I couldn't stomach that risk.
Some people will be more OK with stomaching that risk, but for
me, I wouldn't feel safe with it.
I know that I used to not want even to have an IV placed.
I hate needles and I hate the thing I hate most is Ivs because
they're like inside and outside the body.
At the same time, I I do not like them.
I've had surgeries. I am not a fan of Ivs.
But again, after reading all this, and after, like, listening
to nurses who've talked about how hard it is to place an IV
when a patient is hemorrhaging and has lost a lot of fluid, you
know what? I'd rather have the IV there.
So it's something which the more you learn, you might be
surprised how much your views change.
So as always, my recommendation to you is to keep learning, to
keep asking questions. I hope you've learned something
from today's episode. And I hope that most of all, you
feel like you're not alone in all this, because you're not
alone. And I hope that one day we will
have more answers and more research and more guidance.
But for now, literally just finding healthcare providers and
medical doctors, if possible, who will listen to you and who
don't care if you, you know, for that, for some patients, I think
they get so scared because they don't have a diagnosis.
I like to imagine like Jen Hamilton, I don't know if you've
seen her on TikTok, but she's a labor and delivery nurse.
And I like to think that if I came up to Jen Hamilton and I
was pregnant and going to give birth and I was like, hey Jen,
you know what? I don't have an heds diagnosis,
but I'm hyper mobile and we have all these issues and I'm a bit
worried about this, this and this.
And research suggests that I might be at risk of having these
issues. And there's a chance that you
might have me have some pain, pain relief, intervention and it
might not work on me and I might still feel pain.
And I'm scared of like, you know, feeling you stitch me up
potentially and feeling that can you please just listen to me and
trust me as your patient? And I like to think that someone
like if we say like Jen Hamilton would be like the ideal labor
and delivery nurse. I like to think that Jen would
be like, you know what, Alex, I hear you.
Thanks for telling me all that. I'm going to try and incorporate
incorporate that into your care because you're my patient.
And of course I hear you and I trust you and I see you and I
care about you. So that's what we want.
It doesn't always happen, but let's keep trying to make it
happen, shall we? Anyways, hope you've enjoyed
today's episode and I'll see you next time.