Hypermobile? Given birth? Please tell me about your experience!

[oikopolis]

I'm pg and have hypermobility syndrome (www.hypermobility.org/), and I'm finding it so hard to locate information about how my body will cope with birth!

I'm aware of, and not fussed about, joint pain becoming an issue as I get heavier. That's fine, it will be hard for a bit but it will be over eventually, and I have a physio who can work magic with SPD rehab and so on.

What I AM fussed about is the possibility of birth injuries from a labour that progresses too quickly, or that's obstructed by my pelvic floor. I am also concerned about prolapse and so on, since my tissues are so stretchy and easily damaged. Dr. Google hasn't yet come up with much.

My GP has already assured me that I can have an ELCS, there will be no argument if that's what I want. I've previously been subject to obstetric trauma so he is keen to 'protect' me from any experience that I'm not comfortable with.

But it's not that I'm not comfortable with the idea of VB I'm not afraid of pain or labour or anything like that I'm just very keen to make a smart choice for my body that will minimize long-term risk! I don't care if the recovery's a bit much, as long as I CAN recover iyswim. I would rather have a hairy CS recovery than permanent incontinence/rectocele/hernias/etc.

Anybody got some insight for me?

Is a CS a better option for someone with HMS?
Is a natural birth worth trying for, or would I be taking a significant risk?

I will ask my obstetrician when I am referred at 20 weeks, but I would like to be armed with some information since many drs have no idea about HMS and what it entails. So I need to be able to tell whether the OB is clueless, so I can ask for another opinion.

ok -- and what type are you? EDS III is most common i think?

sorry should have asked that at same time as asking whether you had EDS!

i do know that for EDS cases, a CS is considered a far more sensible option than a VB, and if you have a VB you need a lot of monitoring usually due to the vascular stuff. have you chatted to your consultant? are you under a rheum or?

i have hypermobility syndrome only and as such i've been offered a CS but not urged iyswim.

cardamom might know more about the right specialists/consultants in the UK, i am not in the UK so far less helpful!

as far as i know, EDS without vascular involvement = prenatal genetic counselling, taking it easy on joints during pg, being vigilant for cervical incompetence (regular measuring of cervix in scans, maybe putting in a cervical stitch in early 2nd trimester), and seriously considering CS.

that's about it. i wouldn't go so far as to say "not advisable"! i think your rheum is being a bit loose with his words there. (JMO of course but it sounds like you agree with me!)

i specifically sought consultant involvement for my HMS symptoms because i wanted to rule out EDS/Marfan's, but mine assured me that even with EDS, pregnancy is doable provided precautions are taken.

well that's probably not much help because i'm not a Dr., but in any case, you'll find some support here even if it's just a chance to chat about things.

well if it makes you feel any better, i fell pregnant within about three minutes of ttc, despite DH's health probs. maybe our stretchiness has a secret fertility benefit fingers crossed!

IME rheums often works with tonnes of older people (arthritis and so on) and are sometimes out of touch with younger folk who are keen to get upduffed etc! i think the outlook's rosier than he's made it out to be.

I have hypermobility, I don't know if I have the full syndrome or what - just I have always had a hip that wants to come out and various other joints that are over-extendible. DD2 had juvenile idiopathic arthritis at 3y and her rheumatologist said she also had HMS and that she obviously got it from me (I was sitting in a chair with my legs out stretched and my legs were bowed down towards the floor ). DD3 also has HMS to a lesser degree but she may grow out of it as she is only 2y, DD1 has extra stiff joints . My DH has a joint phobia so it's a fun household to be hypermobile in!

I had SPD with DD1 and sacro-illial pain, she was born by ventouse with legs in stirrups after a 4 day induction with an epi-syntocinon combo thrown in for good measure. I was using crutches and needed a wheelchair to get around hospital for appts by the birth (as I never left home unless I needed to see the Obs, or neuros) but left the crutches in the car when we took DD1 home and didn't need them again.

DD2 - I had SPD twinges from wk 6 but had lots of chiro and that seemed to help so never had any bad pain and DD2 was born at home - really easy birth. No pain post birth.

DD3 - I had a bit of SPD but nothing major, 3 weeks of pro-dromal labour before in labour proper, but when waters went they were mec. stained so transferred in to hospital. Still easy birth and she was my biggest at 8lb 10oz. No residual pain post birth.

DC4 - had SPD pain before I even knew I was pg (figured it was ovulation or pre-period flare), had some sacro-illial pain and my joints crack at the moment which is fun, it's getting better now I am 18w but was pretty painful in the 1st trimester. Hoping for another home birth but we'll have to see.

Personally I would really avoid a c-section if I could as I would be worried about the lack of stability in the abdomen/pelvic areas from the incision but obviously other people will make different judgement calls depending on their situation. Good luck with what ever you decide.

Hi Im 21 weeks and have HMS. I know very little about it but already have SPD so will be reading this thread in great detail.

Nobody seems to know what it is or how to help me or what this will mean, which is a bit daunting for my first pregnancy.

I have EDS III and have had three sections. I recovered well but had difficult pregnancies. I'm quite badly affected and found that physio from the beginning of the pregnancy and for months afterwards was very helpful. There was very little discussion of a vb, due to my condition. It is worth noting that EDS can carry an increased risk of miscarriage in the early stages and of premature and rapid labour in the later stages of pregnancy.

I am hyper mobile and had ECS 1st time and ELCS for twins 2nd time. but I did lots of pilates, which I found better that yoga as yes, I can do yoga poses easily - because we bend, don't we? but it doesn't touch the muscles it's supposed to, instead it stretches my tendons... however pilates is the one thing i found that was so specific that I finally had core strength! it kept my body together during twin pregnancy and after - highly recommend.

I have eds type 3 with some overlap symptoms with other types. i had no info during pregnancy, so you'll see from my post that i have bombarded you with stuff!

By the way, EDS type 3 is used interchangably with hypermobility syndrome by alot of consultants, as there is still so much they dont know about it. (Prof graham wrote a paper on the subject)

In my mind i separate it out as hypermob is just bendiness, but eds 3 is bendy plus a whole range of other symptoms such as the soft skin, loss of muscle tone, IBS, POTS etc.... but this is my own definition!

i am guessing you mean you dont have the vascular type of eds (type 4), or marfans? so heart issues wont be a risk? what about soft skin/ tissues?

I had a c-section although wanted a waterbirth and had done the hypno birthing course! in all, i think a c-section was the right way to go for me, BUT i am very very hypermobile so my experience may not relate to how yours will be. My ds was also huge and breach btw, so a waterbirth would have been a very bad idea!

in my next post are my list of hypermob & pregnancy thoughts - dont know which will be useful to you as i dont know how badly you are effected by hypermobility:

please let me know if you have any questions or anything, and i'd love to know how you get on

My long list of thoughts - please dont be freaked out, as i had a bad hospital experience, but this wasnt to do with hypermob, it was to do with rubbish staffing! I wasnt diagnosed with eds/ hypermob and with hind sight, there is alot that could have been done to make pregnancy, birth & post natal alot better - which is good news for you surely?!

i have included everything i can think of so you can think about it - but you know what, yes it was a difficult thing to do, but if i ever had the chance again, i'd do it like a shot!

PAIN RELIEF

• get them to check really thoroughly the epidural has worked all over, people with hypermob can potentially have resistance to them and need a bit more (i did need a bit more but was fine after that)

• same goes with post operation drugs, particularly when you get on the ward, hypermob people can find the drugs dont work as well, and post natal wards can be rubbish at pain control, so you may need to shout (I was in agony, didnt help that the midwives kept forgetting to give me the drugs then refusing to make up the dose after grrrr, however once i had complained and complained, and got to see a doctor, they gave me some kick ass pain killers and got pain levels back under control again

LIFTING

• get them to write on your notes to be careful when moving you from op trolley to bed etc, as they partially dislocated my right hip doing this. you'll be very bendy and completely numb, so wont be able to safeguard your joints

POST NATAL WARD

• big letters and notes across your notes will be necessary, as post-natal midwives tend to treat everyone like duplicates, and if they need different things, they get irritated (kindly, i will put this down to being overstretched!).

• you'll need extra help reaching your baby & picking him/her up, as you can strain muscles and ligaments trying to do it yourself when your core muscles have been cut (yes, thats exactly what i did !). you shouldnt push yoruself to get really active straight after as well, for the same reason

• the good news - the post op poo probably wont be so bad as for other people!

AFTERWARDS

• glad you have good physio on standby, you'll need to be really good about getting your core muscles back, and also your pelvic floor muscles.

• although i had a c-section, i still had pelvic floor/ wee problems so you need to be totally dedicated to those kegel exercises!

• you may also need to be careful about breast feeding/ carrying baby/ bending/ lifting, and even what kind of buggy you get. my wrists and shoulders and neck got very painful & overstrained from bf positions, and having a baby that would only sleep in my arms! a higher buggy (like stokke i think?) is much better for your back (i say in hindsight)

-spd actually got worse after birth, and i had zero medical support, so make sure you have rheum lined up to monitor you closely - alot of the damage to my body was done then by lack of treatment and bad advice - so cant emphasise this enough!

• next, a tricky one: i was advised to stop breast feeding as it continues the relaxin hormones that keep the body all flexible and floppy (and made it totally rubbish!). i didnt listen as i thought it wouldnt make much difference, but it really did, a month after stopping (at 11mths), my whole body tightened up again. I am not advising you not to bf, but no one made it clear that it really would help me as hcp's are so careful about being pro-bf!

PREGNANCY

• i got spd at 20 wks, and was on crutches/ immobile by the last trimester, and did not bounce back post birth, as muscles more likely to remain stretched. dont struggle through it, and dont listen to gps who often are dismissive of it

• get specialist antenatal physio and support belts to help, and do pilates/ physio work on keeping muscles as strong as poss

and finally, I had some bleeding around 7 mths and had to stay in hospital for a few days - i think that was the eds/ hypermobility, combined with a gruelling work schedule, so be extra careful to avoid overstraining your body (i didnt know i had eds at this point so you are very much forewarned and forearmed!)

and finally - i am sorry about the essays :-)

Double - Fantastic post - only one slight correction ().

Bfing doesn't release relaxin and in fact postpones the release of it.

Relaxin is released by the chorion (membrane between mum and baby), placenta, decidua (womb lining during pg/what comes out in a period), by the corpus luteum (the cyst that forms to mature and expel the egg during ovulation) and by the breasts during their maturation in pg (breast tissue isn't actually mature until colostrum starts being produced, regardless of age of the woman) but not during bfing.

As bfing can help delay the return to fertility, it can postpone ovulation (SPD can 'flare' during ovulation and during the few days before a period - possibly due to the cervix softening to release the womb lining).

With DD1 I had pretty severe SPD, and had big trouble establishing bfing (in fact she was mainly bottle fed formula with some EBM and the occasional direct bf) for her first 8 weeks. My period came back at 9w and with it a flare at each ovulation and a few days before my period (first periods can be without ovulation).

With DD2 even though I was bfing DD1 & DD2 I didn't have any SPD pain post-birth and I didn't get my periods back until 11m - I had SPD from week 6 of her pg, though it wasn't any where near as bad as DD1.

With DD3's pg I was still bfing DD1 & DD2 and had minor SPD pains, after her birth I didn't get my periods back until 11m again. With DC4 I had SPD pains before I even knew I was pg!

I am not saying you didn't experience what you did, just that it probably wasn't tied to the cessation of bfing. I was also told bfing would exacerbate SPD, but I can't find any science to back that assertion up as relaxin is a hormone of pg and fertility not of bfing (when fertility tends to be lower esp. in the first 6m).

Having said that relaxin takes about 5 months to decrease (though it can take longer or certain individuals may be extra sensitive to it) so it is present during bfing (assuming you don't not bf for the first 5m and then initiate relactation!) but not released by the act of bfing.

Sorry for the essay!

ooooh, that interesting to know re bf (feels relieved didnt stop for spd!)

must research more... its so difficult to get actual FACTS isnt it!

There does seem to be an assumption that bfing means all the hormones of pg carry on being produced but there isn't the science to back this up (some of the research into relaxin has been done on dogs and some have extrapolated this to humans when it doesn't seem to be the case).

Double thanks ever so much for all the info!! sounds like you had a hell of a time in hosp, you poor thing.

no i have no marfans or EDS symptoms beyond hypermobility. have had the full EKG investigations, eye checks etc. with no signs of anything dire, and i don't have the fragile skin or scarring differences or anything like that. just the "loose joints" and a slight marfanoid habitus.

and i so agree about the dearth of proper information out there. it is really shocking isn't it. my OB (who, i learned this week, is actually a uro-genital specialist who knows a fair bit about my condition) has been very good with getting her reading in and so on; even she has commented on how ridiculous it is that such a relatively common condition/symptom set has so little concrete research attached to it.

That's good news OP, so you mainly need to watch for the over stretching pre, during & post birth...

Please keep updating as I really want to know how you are getting on.

It would be so positive if you can manage hypermobility throughout pregnancy - being as informed as much as possible, I would like to think it makes a difference.

Strikes me we should all capture as much detail as we can about out experiences, 'stockpiling ' anecdotal evidence in the face of no medical enquiry going on...

(and yes, awful time in hospital, st Mary's paddington- avoid!)

Just a little moan that those with HMS will get - I needed to cough yesterday while out pushing the pram. So I stopped walking and coughed. Which nearly dislocated my right hip and pulled on my symphysis pubis joint (I was standing awkwardly) I managed to limp home using the pram as a walker.

Oh the joys!

On a side note is extra long arms normally associated with HMS? I ask as I jokingly refer to my self as a Tyrannosaurus Rex because my arms are so short in comparison with the rest of me (I can easily wear clothes from the petite section for tops and the tall section for long skirts).

Just time for quick vote of sympathy/ empathy... Coughing can be a dangerous sport for us bendies!
Interesting that you have hip & pubic problems... Me too, right hip like yours - yay illness snap :)

And I think you are a bit of an unusual type with the arms thing! Eds/ htpermobility usually go hand in hand with 'marfanoid' structure - tall, skinny (ha! I wish!), longer arm span than height, & long fingers too...

But it's all just tendencies & groupings with eds 3/ hypermob, as they really don't know enough about it. I am a funny type as am more than type 3 but don't have the genetic markers of tyPe 4 (thank god), but at first was told the types were very much discrete sets...

I wish it could all be clarified, as does us no favours at all at the mo....
My HR director looked it up online & decided I was perfectly healthy except comedy stretchy skin and perhaps I should join a circus (words fail me). And just last month my gp wrote a referral saying I had general pain in joints & chronic fatigue.... Errr, that's the two least severe symptoms then!

Drat long post again excuse whittering!

The weird thing is it's normally my left hip that's rubbish but that's probably due to me always being a passenger in a car as I can't drive and if I get out wrong my hip starts sliding .

I worry about DD2 & DD3 (DD3 to a lesser extent) as DD2 had JIA (arthritis) and when in remission her HMS was more pronounced due to the muscle wastage from being so sedentary due to pain/joint swelling.

The worst thing was she actually had normal joint flexion for the first time in her life as the arthritis was limiting the range of motion to normal so to most people she didn't look arthritic (inc. some HCPs!!). Which was fun as people didn't understand why that was arthritis (Someone even said I should be grateful the arthritis had cured the HMS )

I knew I had floppy joints from having had SPD & physio in my first pg but thought it was limited to my hips and wrists. DD2's Rheumo said 'I can tell who she gets her HMS from!' and pointed to me!. I didn't know how until he pointed out the with my legs outstretched my legs were bowing towards the floor! Unfortunately my DH has a joint phobia so I can't talk about it/DD2/DD3 to him or he goes pretty green and looks faint. He did so well though coming to Rheumo appts and going to physio with us.

See I can whitter as well as you DoubleLife

I just wanted to update here and let everyone know that I had a surprise early arrival on Tuesday after a PROM on Sunday. Since he was only at 34 weeks gestation I resolved to give him the best chance of avoiding breathing probs by trying the vaginal birth route.

Well!

I cannot tell you how well it went!

Induction at noon, full labour at 2pm, epidural that gave partial relief despite being cranked up a million times (I did warn them it wouldn't work!), 19 mins of pushing, no tears, no stitches, no issues at all. Baby is hale and hearty, breathing and eating well, just a bit small and in need of help with learning to feed efficiently.

I was up and about, using loo and absolutely 100% fine within 12 hours of birth. Obviously a bit tender, but nothing that some ibuprofen doesn't cure. The specialist obstetric unit was very very nervous about my birth (thanks in part to me harassing them about getting info about HMS etc!) and they are all amazed by the outcome.

Of course this isn't representative of anything, but I did want to say that this thread helped me prepare. I didn't push at ALL until baby's head made an appearance on its own; I didn't listen to the OB who was instructing me to push hard hard hard with held breath. I took my own breaks and didn't let the hcps rule the experience for me.

I pushed very very gently and breathed freely throughout. I used my Pilates to push efficiently (i.e. I knew where my vaginal/pelvic floor muscles were, vs. my tummy/back muscles, so I didn't waste energy). I held my own legs open behind the knees instead of letting them flop.

Having a half-effective epidural helped too. I knew what was happening and didn't overdo it.

anyone who wants to talk about their own experience/get my opinion please feel free to message me. or ask here, i'll try to check back.

thanks to all for the support and information x

Congratulations!! That's fantastic news and I am so pleased for you!
XXX

Wow I have learned so much about hms on here! I never knew that was the reason for my orangutan arms. I'm 5ft 10, but my arm span is massive, more than 6ft. I also have the big square hands and long fingers. I am diagnosed with normal hms, not Marfans or eds, consultant did listen to my heart and no problems, but said I did have other symptoms of eds.
I've had 2 kids so far, both vb, and am planning vb again, ds took me a long time to get back to normal, but it was a difficult birth. Dd was very easy and I was back riding the horse a week later.
Sadly both my kids have inherited hms, dd is much worse than ds and already complains of joint pain, she is just 6, that's earlier even than I remember pain from :0(

Congratulations oikopolis.

I have EDS type 3 although it's fairly mild. All my children have it as well, DS2 is particularly severe and uses a wheelchair. I've also had 2 miscarriages which is common with EDS.

Although prem labour is common in EDS all my boys were late. I had prolonged rupture of membranes with DS2 and DS3.