Ehlers-Danlos Syndrome, Hypermobility, and Pregnancy: Everything You Need to Know

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Adam Foster

Director at The Fibro Guy

Adam Foster is the founder of The Fibro Guy and one of the leading voices in hypermobility, EDS, and chronic pain rehabilitation. A former Reconnaissance Soldier, he developed chronic pain after an IED blast in Afghanistan and built his approach from the ground up when the medical system had no answers. Since 2009 he has worked with thousands of people across eight countries, drawing on pain neuroscience, motor learning, and sensorimotor rehabilitation. He co-authored "No Pain, No Pain" with trauma psychologist Dr Mairi Harper, directed the documentary "Invisible Monster," and has been featured in Forbes, BBC Radio 4, ITV News, LiveScience, and The Telegraph.

Latest posts by Adam Foster (see all)

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Most pregnancies in hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder go fine, and that almost never gets to go first, as this subject really only attracts two kinds of writing and neither of them is much use to you: vague reassurance that tells you nothing at all, or a list of catastrophes with no indication of how likely any of them actually are.

The more useful version is that there isn’t one risk story here, there are several of them, and which one applies to you depends mostly on which type of Ehlers-Danlos syndrome you have. Vascular EDS is the serious one in pregnancy, as it carries a clearly raised risk of the uterus or an artery tearing, severe tears during birth, and deaths recorded in the older hospital records ^[1][2]. hEDS and HSD are a different conversation altogether though, and a much less frightening one: more pain and more instability, local anaesthetic and epidurals that don’t always work the way they’re supposed to, labour that can behave a bit oddly, wounds that are slower to close, pelvic floor problems afterwards, and a fairly good chance of having to argue your corner for every one of them ^[3][4][5].

Now, the evidence underneath all of that is patchy, and that comes from the people who built the clinical guidance rather than from us: the good quality data is sparse, and planning has to be built around the woman in front of you rather than around a protocol ^[3]. Which sounds like a cop out, and it really isn’t. It means nobody can hand you a percentage for your own pregnancy, and it means the value of knowing any of this sits in anticipating a pattern rather than in predicting an outcome.

The two questions everyone arrives with

Before any of the detail, two questions come up more than all the others put together, so they’re worth answering straight away.

The first is whether pregnancy will leave you permanently worse than it found you.

Symptoms getting worse during pregnancy and in the months afterwards, particularly pain and instability, is one of the most consistently reported things in hEDS and HSD, so that part is real and you aren’t being dramatic for expecting it ^[3][5]. In a handful of described cases of hypermobility type EDS, women got markedly worse late in pregnancy, with joint instability, orthostatic symptoms, sciatic pain and genuine limits on what they could do, and then came back towards where they’d started afterwards rather than staying at the worse level ^[6]. That’s a small number of described cases and it should be read as a hint rather than a promise, it’s the only direct answer anybody has to the question though, and it points the reassuring way.

If you have POTS as well, the shape of it is a bit different, as symptoms getting worse is commonest in the first three months, the last three months, and at around three months after the birth, and where EDS sits alongside the POTS, the worsening afterwards was the more prominent problem ^[7]. So, for that combination the pregnancy may not be the hardest part of it, and knowing that in advance is a great deal more useful than finding out in month three.

The second question is whether you’ll pass it on.

That one is a standing item on every preconception planning list there is, which tells you it’s a fairly normal thing to ask rather than a morbid one ^[3][8]. It’s a much more useful conversation with your subtype settled first, as the conditions with a known genetic cause can be picked up by sequencing, and the inheritance discussion for those is a concrete one ^[9][10]. hEDS and HSD sit in a different position, and that conversation belongs with a clinical geneticist who can actually look at your family, rather than with anything you read online, this article included.

Ask for the referral before you conceive if you can, as the wait is long pretty much everywhere, and it’s a much calmer conversation to have when you aren’t already pregnant.

There’s a third question that arrives nearly as often, which is whether you should be booking a caesarean, and the answer to that one is genuinely unsatisfying. There’s no clear evidence favouring vaginal birth or caesarean overall in EDS ^[9]. In hEDS, vaginal birth looks reasonable where there’s no obstetric reason against it, with the caveat that severe joint problems can shift that ^[8]. And in POTS, the way the baby gets delivered is decided by obstetric reasons rather than by the POTS itself ^[11].

So, there is no rule, and anybody telling you that hEDS means an automatic caesarean, or that it means you have to avoid one, is well ahead of what has actually been shown. It’s a decision about your joints, your history, your other conditions and your obstetric situation, and it wants making with people who know all four.

Which type you have decides most of it

Ehlers-Danlos syndrome isn’t one condition, it’s a family of them, and they behave very differently in pregnancy. So the single most useful thing you can do before conceiving is find out which one you’ve actually got, and in particular whether vascular EDS is on the table at all, as that’s the one distinction that keeps coming up as the important one ^[9][10].

Vascular EDS is rare, and it’s the one that changes everything, as it carries a clearly raised risk of the uterus rupturing, of arterial events, of severe perineal tears, and of maternal death ^[1][2]. It isn’t a subtype anybody manages casually, and pregnancy in vEDS gets planned in a completely different way to pregnancy in hEDS. If you don’t know your subtype, and there’s any doubt at all about it, that’s a conversation to have before you’re pregnant rather than during.

The types with a known genetic cause can be picked up by modern gene sequencing, which is worth knowing, as it means the question of which subtype you have is often answerable rather than a matter of somebody’s opinion ^[10]. hEDS and HSD are the common ones, and they sit in the same broad family of conditions where the tissue is more compliant, wound healing is affected to some degree across every type, and pain, fatigue and multi system symptoms come as part of the package ^[12].

The rest of this is about hEDS and HSD, with vascular EDS flagged where the advice genuinely diverges. If you have vEDS, almost nothing below is written for you, and the planning you need is specialist from the very start.

Why the risk figures you’ve read don’t agree with each other

You’ll have noticed by now that no two sources on this give you the same numbers, and it isn’t because somebody’s lying, it’s because there are two completely different kinds of evidence here and they point in different directions.

The first kind is the big national database work, where every EDS subtype gets counted together, as the coding doesn’t separate them. What comes out of it is higher odds of an early birth, of the cervix opening too soon, of bleeding before and after delivery, of the placenta sitting low, of caesarean birth, of a baby growing more slowly than expected, of serious illness in the mother, and of being readmitted to hospital after going home ^[13][14][15]. Those are real signals and they’re worth taking seriously.

What they can’t tell you is who that signal belongs to. A database that lumps vascular EDS, classical EDS and hEDS into one code will only ever show you the average of all three, and vascular EDS is the subtype carrying the catastrophic events, so the average gets pulled in a direction that may have very little indeed to do with your pregnancy ^[9][16].

Now, the second kind looks at hEDS and joint hypermobility syndrome specifically, and it’s a lot more reassuring. When an entire country’s birth records were checked for women with joint hypermobility syndrome or EDS, there was no increased risk of early birth, of waters breaking early, of caesarean, of stillbirth, of a low Apgar score, or of a baby arriving small or large for dates. The one thing that did differ, in the EDS group, was more labour being induced and more waters being broken artificially ^[17].

Against that, a large international group of women with hEDS and HSD reported higher than typical rates of a long list of things: pre-eclampsia and eclampsia, waters breaking before term, early birth, bleeding before and after delivery, severe sickness, shoulder dystocia, very fast labour, caesarean wound infection, postpartum psychosis, PTSD, and babies born before anyone got to hospital ^[4]. That’s women filling in a questionnaire about births that had already happened, which is a weaker kind of evidence than a hospital record and much more prone to the people with the worst time being the ones who fill it in, and it’s still the largest picture we have of what hEDS childbearing actually looks like from the inside.

Two older groups sit somewhere in between the two. An Italian group of women with joint hypermobility syndrome had generally good outcomes overall, with no stillbirths and no oxygen starvation events in the babies, but roughly one in ten births came early, and there were real problems afterwards with scars that formed badly after caesarean or episiotomy, with bleeding, with prolapse and with clots ^[18]. A French hEDS group had caesarean and early birth rates much like the general population, but higher rates of miscarriage and of repeated miscarriage ^[19].

So which is it. The answer is that it depends entirely on the outcome you’re asking about, and that the question of how much of the alarming signal in the big EDS databases belongs to hEDS at all, rather than to subtype mixing or to who chooses to answer a questionnaire, is one that the people writing these papers say is still open ^[4][9].

It’s an unsatisfying answer, and it’s also the accurate one. In practice it means you plan for the things that are cheap to plan for and consistently reported, which is most of what follows, and you don’t spend nine months waiting on a statistic that was never about you in the first place.

What actually changes in a hypermobile body during pregnancy

Pregnancy changes your mechanics and your circulation, and it does that to everybody. It lands differently on you because the starting point is different: joints that already move further than they should, tissue that’s already more fragile, pain and fatigue that were already there, an autonomic system that already struggles with being upright, and quite often a bladder and a pelvic floor that were giving you grief long before any of this started ^[12].

Joint laxity going up during pregnancy, is one of the more consistently described things, and most of what has been reported on pelvic and urinary problems across the EDS conditions describes exactly that, joints moving further than they did before, during the pregnancy itself ^[20]. So if you feel like your hips and your ribs have gone somewhere new since you got pregnant, that’s something that gets reported a great deal, and not something you’ve imagined.

Now, pelvic girdle pain is pretty much the opposite of what most people assume. In a very large group of women drawn from the general pregnant population rather than from an EDS clinic, those who reported generalised joint hypermobility had higher odds of pelvic girdle pain during pregnancy, and the effect was clearest in the first three months rather than the last ^[21]. A smaller group, followed forward rather than asked afterwards, didn’t show a clear overall increase in pelvic girdle pain during or after pregnancy at all, what it did show was higher pain intensity early on, and the highest odds where hypermobility came alongside a higher BMI ^[22].

Both of those are the general obstetric population rather than diagnosed hEDS, so read them as being about hypermobility rather than about your diagnosis. Taken together though, they do suggest hypermobility is more tied to early pregnancy pelvic girdle pain than to the late pregnancy version, which isn’t remotely what you’d guess from the mechanics, and it’s worth knowing if your pelvis started complaining at nine weeks and somebody told you it was much too early for that.

In hEDS and HSD specifically, worsening pain and worsening instability during pregnancy and afterwards is one of the most consistently reported experiences there is, though most of what sits behind that is women describing their own pregnancies rather than anything measured ^[3][5]. An older group of women with EDS reported pelvic pain and instability more often than the comparison group did, across mixed subtypes ^[23].

There’s one thing in the older case material that genuinely matters for how you plan the next year of your life though. A handful of described cases of hypermobility type EDS reported marked worsening late in pregnancy, joint instability, orthostatic symptoms, sciatic pain, real limits on what the woman could do, and then a return back towards where she started afterwards rather than a permanent step down ^[6]. It’s a small number of cases and it should be read as a hint rather than a promise, but the fear that pregnancy will leave you permanently worse is a very common one, and what has been described doesn’t support it.

Before you conceive, if you still have that option

Preconception planning comes up in nearly everything written on this, and the list of what it covers is fairly consistent: getting the subtype right, going through any previous pregnancies and what happened in them, taking an honest measure of how bad your symptoms are right now, talking about the chance of passing the condition on, and getting a team assembled before you need one rather than during ^[3][9].

The team part is the bit that gets skipped, and it’s also the bit that does the most work. What you want is obstetrics, anaesthesia and whoever handles your other conditions actually talking to each other, with one plan written down, rather than five separate appointments where you’re the only person carrying the whole picture ^[3][8]. If you’ve been the unofficial secretary of your own medical care for a decade (unpaid, obviously), and most women with hEDS have, you’ll already know exactly how that goes when nobody’s coordinating.

Symptom burden matters a great deal more than a diagnosis label here, as somebody with hEDS who dislocates a shoulder twice a year and somebody with hEDS who can’t stand up for ten minutes are planning two completely different pregnancies, and the second one needs a lot more support in place from the start.

The first trimester

Two things come up repeatedly this early and neither of them gets much airtime.

The first is miscarriage. A French group of women with hEDS had higher rates of spontaneous miscarriage and of repeated miscarriage than expected ^[19], and miscarriage turns up again in broader EDS work, though the findings across different groups are mixed rather than uniform ^[16][24]. That isn’t a prediction about your pregnancy and it isn’t something you can do a great deal about, but being told it’s been reported before is better than finding out afterwards that it’s a known pattern nobody mentioned.

The second is sickness, and this one is mostly a POTS story. In a small number of pregnancies in women who already had POTS, more than half involved severe vomiting or full hyperemesis ^[25], and in a much larger group of women with POTS who were asked about it, most said their POTS symptoms got worse in the first three months ^[7]. Where EDS came alongside the POTS, the losses before 24 weeks were more common as well ^[7].

There’s a third thing that belongs here and gets argued about a lot, which is pelvic pain starting very early. In the general pregnant population, the link between hypermobility and pelvic girdle pain was clearest in the first three months rather than the last ^[21][22], so a pelvis that starts complaining at eight or nine weeks isn’t too early, and it isn’t you being oversensitive either. If somebody tells you it’s too early for pelvic girdle pain, they’re working from an assumption about the mechanics rather than from what has actually been measured in women with hypermobility.

So, if you have both, the first trimester is the bit to have support arranged for, rather than the bit you grit your teeth through on the assumption that everybody feels like this.

The middle and the end of pregnancy

The recurring themes through the second and third trimesters are pelvic girdle pain, joint instability, orthostatic symptoms, and keeping an eye on the cervix or on early labour signs where there’s a clinical reason to ^[26][27].

Pelvic girdle pain in hypermobility is well enough described to have its own body of writing, and the practical shape of it is that the pain follows load and position rather than tissue damage ^[26]. Standing on one leg, rolling over in bed, getting out of a car, stairs. The things that hurt are the asymmetric ones, and the management is deeply unglamorous: keep the loading even where you can, shorten your stride, sit down to get dressed, and get a physiotherapist who has met hypermobility before rather than one who’s going to hand you a pelvic support belt and a leaflet.

That list is a practical read rather than a tested protocol, as what has been described is where the pain turns up and what makes it worse, rather than a trial of what fixes it in hypermobility specifically. So treat the advice as sensible load management, try it, and drop anything that doesn’t help you instead of persisting because a leaflet said so.

The cervix question is the one that worries people most and it’s also the one with the thinnest evidence behind it. The cervix opening too soon comes up as a raised risk in the big mixed subtype databases ^[13][14], and it’s suggested in reviews and in individual reported cases in hypermobility type EDS, including waters breaking early ^[9][27]. In the country wide record check that looked specifically at joint hypermobility syndrome and EDS, it didn’t show up at all ^[17]. Which is to say the signal exists, it isn’t strong, and it isn’t clear how much of it belongs to hEDS rather than to the other subtypes. If you’ve had an early birth or an early loss before, that history is what should drive the monitoring, rather than the diagnosis on its own.

Orthostatic symptoms are worth naming separately, as pregnancy increases blood volume and pushes the circulation around, and if your autonomic system was already struggling, that isn’t a neutral change. Instability getting worse, orthostatic symptoms getting worse and sciatic pain late in pregnancy are all in the described cases ^[6].

POTS in pregnancy

If you have POTS as well, and a lot of women with hEDS do, the first thing worth knowing is that the course of it in pregnancy varies enormously between people rather than following one predictable pattern.

Pull together everything published on POTS in pregnancy and the quality of it is poor, but what’s there is broadly reassuring: the way the baby gets delivered is decided by obstetric reasons rather than by the POTS, and vaginal birth looks safe with close monitoring where there are no obstetric complications ^[11]. That’s a much less dramatic conclusion than the one circulating in POTS groups, where the assumption is very often that POTS means a planned caesarean.

The largest picture of what it actually feels like comes from a very big group of women with POTS who were asked directly. Symptoms getting worse was most common in the first three months, in the last three months, and at around three months after the birth, which is a genuinely useful shape to know in advance, as it tells you the dip afterwards is a described thing rather than you failing to bounce back ^[7]. For a small proportion of women who could point at a trigger for their POTS starting in the first place, that trigger was a pregnancy ^[7].

Having EDS alongside POTS didn’t change the pregnancy symptoms much, what it did go with was more worsening after the birth, and more pregnancy losses before 24 weeks ^[7].

Practically, the recommendations that come up repeatedly are early anaesthetic review, and thinking about blood pressure and heart rate management before you’re in labour rather than during ^[11][28][29]. Early anaesthetic review is worth pushing for even if nobody offers it, as it’s the appointment where the anaesthetic problems get written into your notes, instead of being explained to a stranger who is meeting you for the first time in established labour.

Mast cells, and where that question actually sits

Mast cell activation gets discussed constantly in hypermobility circles and it is the area where the pregnancy evidence is thinnest.

The hEDS and HSD childbearing guidance does include mast cell disease, as it turns up alongside often enough to matter clinically, and it’s clear that including it is expert guidance rather than something built on pregnancy outcome data ^[3]. That’s worth holding onto, as it’s very easy to read a guideline and assume everything in it carries the same weight.

The pregnancy findings that do exist come from mastocytosis rather than from mast cell activation syndrome, and none of it was done in hEDS. What’s described there is a fairly mixed picture: symptoms during pregnancy go in different directions for different women, mediator related symptoms occasionally turn up during labour itself, and outcomes are generally not catastrophic where the disease is being medically managed ^[30][31][32]. Mastocytosis is a different condition to MCAS though, so treat all of that as a reason to have a plan rather than as a description of what will happen to you.

What that adds up to in practice is unremarkable and still worth doing. If you have a mast cell diagnosis, or a history of reacting to drugs, dyes, latex or temperature changes, it goes in your notes before labour, and it goes to the anaesthetist specifically.

Anaesthesia, and the epidural that doesn’t take

Pain relief not working is one of the most consistently reported experiences in hEDS and HSD childbearing. Epidurals that don’t take, local injections that don’t take, and pain relief that wears off far faster than anybody expects it to, reported over and over again in both the interview work and the questionnaire work ^[3][4][5]. For years the response to that was essentially a shrug, as the only evidence for it was women saying so.

That has changed though. Outside pregnancy, people with EDS and people without were given the same injection of lidocaine under the skin of the forearm, and fewer of the EDS group were adequately numb in the half hour that followed than the comparison group, which points towards the anaesthetic simply not lasting as long ^[33]. That is a forearm rather than an epidural, and it’s skin rather than labour, so it doesn’t prove anything at all about what happens on a delivery suite. What it does do is move the whole thing out of the category of things women report and into the category of things that have been measured.

Alongside that there are individual reported cases of caesarean under spinal anaesthesia where the anaesthetic didn’t work as expected, and where unusually high doses into the spinal space were needed ^[34]. A handful of cases is a handful of cases, but it does line up with what women have been saying, and it’s the sort of thing an anaesthetist would much rather know about beforehand than discover halfway through an operation.

There is no single routine that fits every EDS subtype, and the anaesthetic recommendations reflect that rather than offering one rule ^[35][36]. For vascular EDS in particular, some guidance advises avoiding regional anaesthesia into the spine altogether, because of the bleeding and fragility risk ^[35]. That is a vEDS point and it does not transfer to hEDS, where epidurals are entirely reasonable and the problem is whether they work rather than whether they’re safe.

The practical version of all that is short. Get the anaesthetic conversation into your notes early, ideally at an antenatal anaesthetic appointment rather than in labour. Tell them specifically what has happened to you before, with dentistry, with stitches, with any procedure done under local, as “the numbing never works properly on me” is a much more useful sentence to an anaesthetist than a diagnosis is. And ask, in advance, what the plan is if the epidural doesn’t take, because that plan is far better made on paper, in a quiet room, than improvised while you’re in established labour.

One more thing about how this gets received, as it’s the bit that causes the most damage. A failed epidural in a woman with no diagnosis tends to get put down to a difficult insertion or to anxiety, and a lot of women with hEDS have been on the receiving end of exactly that, sometimes more than once. Having the possibility written into the notes in advance changes what it means when it happens, as it stops being evidence about you and starts being a known feature of the condition with a contingency attached, which is a completely different conversation to be having at the time.

It’s also worth being clear about what the problem is. In hEDS, the issue with epidurals and local anaesthetic is whether they work well enough and for long enough, rather than whether they’re dangerous. The safety warning about avoiding regional anaesthesia into the spine belongs to vascular EDS and to the bleeding and fragility that comes with it ^[35]. Those two things get mixed up all the time, including by clinicians, and the result is women with hEDS being talked out of pain relief that was never the risk in the first place.

None of that guarantees you good pain relief. It does mean that if the epidural fails, it’s a known possibility with a plan attached, rather than an argument you have to win while in labour.

Labour and birth

Labour in hEDS and HSD gets described as unpredictable far more often than it gets described as dangerous, and those are two very different things.

The pattern that recurs is a long latent phase, the early part where not much appears to be happening and everybody tells you to go home and have a bath, followed by an active labour that moves considerably faster than anyone planned for ^[3][5]. Precipitate labour, meaning a birth that happens very quickly indeed, is reported, and so are babies born before arrival at hospital ^[4]. If you live an hour from the unit, that’s worth a conversation rather than a shrug.

The practical consequence of that pattern is about timing, and it’s ours rather than anything that has been tested. If the early phase of your labour has been long and quiet, the standard advice about when to come in was written for a labour that builds gradually, and it may not describe yours. Worth raising with your midwife beforehand, and worth having a low threshold for going in, particularly if it isn’t your first baby and particularly if the drive to the unit is a long one.

Mode of birth is where a lot of women arrive expecting a rule, and there isn’t one. There’s no clear evidence favouring vaginal birth or caesarean overall in EDS ^[9]. In hEDS, vaginal birth looks reasonable where there’s no obstetric reason against it, with the caveat that severe joint problems can change that calculation ^[8]. So the sensible version is that it’s a decision about you, your joints, your history and your obstetric situation, rather than a decision your diagnosis makes for you.

Joint positioning is the part that gets missed, and it’s also the part you can actually influence. Deciding in advance which positions your hips and your shoulders will tolerate, and writing that down, is in our opinion far easier than working it out during transition, and it’s the sort of thing a birth plan is genuinely useful for. It’s a practical suggestion rather than a tested one, and it costs nothing at all to have made the decision while you’re comfortable.

For vascular EDS, birth gets planned entirely differently, and the severe tears and catastrophic events described in vEDS are the reason for it ^[1][2].

Wounds, scars and the weeks afterwards

Wound healing is one of the clearest and least argued about parts of all this, and it’s the bit most likely to affect you personally.

Affected wound healing is part of the core description of EDS across the subtypes rather than a complication of the unlucky ones ^[12][37], and skin wound healing is impaired to varying degrees in every EDS type ^[38]. That same writing is equally clear that the direct clinical evidence for how to manage it is sparse, so the problem is well established and the answer to it isn’t, which is a frustrating combination and an accurate description of where things sit at the moment.

In the hEDS and HSD questionnaire work, slow healing was the commonest of these problems by some distance, reported by roughly four in ten women ^[4]. Wounds opening up after they’d been closed, caesarean wound infections and vaginal wound infections were all reported too, in smaller but not small numbers ^[4]. Older groups describe the same territory: episiotomies that healed badly, caesarean and episiotomy scars that formed abnormally, poor healing named as a practical problem rather than a theoretical one ^[10][18][23].

What that means for you is mostly about who you tell and when. The person suturing you is making decisions about material and technique, and whether your skin holds a stitch is directly relevant to those decisions. Saying it at the booking appointment is good, having it written somewhere the surgical team will actually read it is better, and saying it in the room before they start is the version that works.

It also means giving the wound a great deal more time than the standard advice assumes. A caesarean scar that’s healing slowly in a woman with hEDS, is doing something that has been described repeatedly, and it deserves a proper look rather than being told it’s fine because the standard timeline says so.

The pelvic floor afterwards

Prolapse, incontinence and pelvic pain are common long term problems in EDS and hypermobility, and that’s true whether or not you’ve had a baby ^[20][39]. Pregnancy and birth are an obvious additional load on a structure that was already working with more compliant tissue.

A lot of women with hEDS arrive at pregnancy with bladder or pelvic symptoms already in place, as pelvic and bladder problems are part of the general picture of the condition rather than something pregnancy invents ^[12][20]. That matters for how you interpret what happens next. Symptoms that get worse in pregnancy in somebody who already had them, aren’t a new problem appearing, they’re an existing one being loaded, and the plan afterwards should reflect that rather than treating you as somebody starting from zero.

It also means the postnatal check is the wrong place to raise it for the first time. If leaking, heaviness, dragging or pelvic pain were already part of your life before you got pregnant, that belongs in your notes at the start, alongside everything else, as the referral you want afterwards is much easier to get if the problem is already documented.

The useful evidence on what helps comes from the general postpartum population rather than from any EDS group. Pelvic floor muscle training after birth lowers the odds of urinary incontinence and of prolapse ^[40]. That was not measured in women with EDS, so nobody can tell you the effect is the same size in you, but there’s no reason to think training your pelvic floor is less relevant when the tissue is more compliant, and plenty of reason to think the opposite.

The practical point is that it’s worth pushing for an actual referral to a pelvic health physiotherapist rather than accepting a leaflet with a diagram on it. The leaflet assumes you can find the muscle and know when it has switched on, which is exactly the thing that tends to be unreliable when the signal coming out of the tissue is poor in the first place.

The part where nobody believes you

Anxiety, depression, PTSD and lower quality of life all run higher in EDS and hypermobility groups than in the populations they get compared against ^[41][42]. That is not a claim that the pain is psychological, and anybody reading it that way has it backwards. Years of pain, years of being dismissed and a body that does unpredictable things is a perfectly reasonable set of circumstances to feel awful about.

Pregnancy sharpens it, as pregnancy is the point where you meet the largest number of new clinicians in the shortest space of time, most of whom have never treated anybody with hEDS.

Poor maternity care experiences in hEDS and HSD have been linked to trauma, stress, anxiety, women disengaging from services altogether, and women deciding against having more children ^[3][5]. Postpartum psychosis and PTSD were both among the things reported in the large international group ^[4]. This isn’t a footnote on a list of physical complications, it’s one of the main reported harms in its own right.

So, plan for it the way you’d plan for anything else. Have someone with you who can advocate when you can’t, have your history written down so you aren’t explaining a connective tissue disorder while contracting, and know in advance who you’d talk to afterwards if the birth went badly. Mental health follow up after the birth is on the recommended planning list for exactly this reason ^[3].

Bleeding, before and after the birth

Bleeding sits in an odd place in all of this, as it’s one of the things most consistently flagged and one of the things least well explained.

Postpartum haemorrhage, meaning heavier than normal bleeding after the birth, turns up across almost every kind of evidence here. It’s reported in the older hospital groups ^[18][23], it’s reported by women themselves in the large international group ^[4], and it comes out as higher odds in the big database work that counts all the EDS subtypes together ^[14][15]. Bleeding before the birth, and the placenta sitting low, also show up in the database work ^[13][14].

What nobody can give you is a clean mechanism or a number that applies to you specifically. The database signal has the subtype mixing problem running right through all of it, and the reported rates come from women describing their own births ^[4][9]. So the honest position is that this is a repeatedly reported association worth preparing for, rather than a settled risk you can put a figure on.

Preparing for it isn’t complicated, and it’s one of the reasons the planning list keeps coming back to the same few items. A bleeding history, yours and your family’s, belongs in your notes before labour rather than being recalled afterwards ^[3][8]. If you bruise easily, bleed heavily with periods, or have had a lot of bleeding after dental work or surgery, that is worth saying plainly rather than assuming somebody has read it.

For vascular EDS this is a different order of problem entirely, and it’s part of why regional anaesthesia into the spine is advised against in some vEDS guidance, and why the whole birth is planned by a specialist team ^[35][1].

Feeding, moving and the first six weeks at home

The weeks after the birth get almost no attention in the general pregnancy material and they are, for a lot of women with hEDS, the hardest part of the whole thing.

The recommended planning list is fairly specific about what to sort out in advance: mobility, feeding support, wound care, pelvic floor symptoms and mental health follow up ^[3][43]. Five things, all of them boring, all of them much easier to arrange while you’re still pregnant than while you’re three weeks in and functioning on no sleep.

Feeding is its own subject, and there is writing on what lactation with EDS involves and what is worth considering ^[43]. What matters more than the detail is that support is arranged rather than improvised, as a woman with unstable wrists, shoulders and a neck that doesn’t like being held in one position is doing a physically demanding job with a body that finds that job harder than most. Getting a decent lactation consultant or an experienced feeding support service lined up before the birth, is the sort of thing that sounds excessive and then turns out to be the difference between feeding working and feeding not working.

Mobility is the one people underestimate. Carrying, lifting, bending over a cot, sitting still for long stretches, going up and down stairs more times a day than you ever have before. None of that has been measured in hEDS specifically, so what we’re telling you here is a practical read rather than a finding: think about the height of things before the baby arrives, get the changing surface up where you don’t have to stoop to it, and get help for the first fortnight if there’s any way at all to arrange it.

Pain and instability getting worse during pregnancy and afterwards, is one of the most consistently described experiences in hEDS and HSD ^[3][5], and the described cases suggest the instability tends to head back towards where it started rather than settling permanently worse ^[6]. That is genuinely reassuring, and it isn’t the same as saying it’ll be quick. Give it a lot more time than the standard six week checkup assumes, and treat that appointment as a starting point rather than a discharge.

And the POTS dip at around three months after the birth is worth writing on the calendar in advance, as knowing it’s a described pattern takes a great deal of the fear out of it when it arrives ^[7].

What to put in your notes, and what to say out loud

Most of what makes these pregnancies go well is unglamorous, and almost all of it is information transfer. The evidence based planning themes come down to a handful of things, and they’re worth having written down and handed over rather than remembered under pressure ^[3][8].

– Your subtype, in writing: Whether you have hEDS, HSD, classical EDS or vascular EDS changes the plan more than anything else on this list, and vascular EDS changes it completely ^[9][10]. If your subtype has never been formally established, that is the preconception conversation to push for.

– One team, not five appointments: Obstetrics, anaesthesia and whoever manages your other conditions, all working from the same written plan, is the single recommendation that comes up in nearly everything written on this ^[3][8]. You shouldn’t be the only person holding the whole picture, although you probably will be, so keep your own copy.

– The anaesthetic history: Every time local anaesthetic has failed you, at the dentist, for stitches, for a procedure, written down and given to an anaesthetist before you’re in labour. This is the item with the most evidence behind it and the one most likely to be waved away ^[3][4][33].

– Bleeding and wound history: Heavy periods, easy bruising, bleeding after surgery or dental work, scars that healed badly, wounds that opened up. All of it relevant, and all of it easy to leave out because it feels like ancient history ^[4][38].

– Dislocations and what your joints won’t do: Which joints sublux, which positions you can’t hold, and which ones are non negotiable in labour. Worth deciding while comfortable rather than during transition, and worth putting in the birth plan rather than in your head.

– POTS and mast cell history: If you have either, they go to the anaesthetist specifically, not just into the general notes ^[3][11][28]. Early anaesthetic review is worth asking for even if nobody offers it.

– A labour that might move fast: A long quiet early phase followed by a very quick active labour, is a described pattern in hEDS, and births before arrival at hospital are reported ^[3][4]. If you’re a long way from the unit, say so early and ask what the plan is.

– Wound care afterwards: Tell the person suturing you before they start, not afterwards. Slow healing was the commonest wound problem reported in hEDS and HSD, by a distance ^[4], and give any wound more time than the standard timeline assumes.

– Pelvic floor follow up: Ask for a referral to a pelvic health physiotherapist rather than accepting a leaflet, as prolapse, incontinence and pelvic pain are common long term in this group, and the training that helps is worth doing properly ^[39][40].

– Somebody checking on your head: Mental health follow up is on the recommended list for a reason, and poor maternity experiences in hEDS and HSD are linked to real and lasting harm ^[3][5].

Most of that list is free, and none of it requires anybody to believe anything about hEDS that they don’t already believe, which is part of why it works, as it asks for planning rather than for agreement.

Pregnancy with hEDS or HSD is usually fine, and it’s usually harder work than it is for other people, in ways that are now reasonably well described. The planning is for the parts that don’t go smoothly, and you can’t tell in advance which parts those are going to be.

The Fibro Guy

References

[1] Murray, M.L., Pepin, M., Peterson, S. and Byers, P.H. (2014) ‘Pregnancy-related deaths and complications in women with vascular Ehlers–Danlos syndrome’, Genetics in Medicine. https://doi.org/10.1038/gim.2014.53

[2] Haem, T., Benson, B., Dernoncourt, A., Gondry, J., Schmidt, J. and Foulon, A. (2024) ‘Vascular Ehlers‐Danlos syndrome and pregnancy: A systematic review’, BJOG: An International Journal of Obstetrics & Gynaecology. https://doi.org/10.1111/1471-0528.17893

[3] Pezaro, S., Brock, I., Buckley, M., Callaway, S., Demirdas, S., Hakim, A. et al. (2024) ‘Management of childbearing with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders: A scoping review and expert co-creation of evidence-based clinical guidelines’, PLOS ONE. https://doi.org/10.1371/journal.pone.0302401