So confused...hypermobile, pregnant and lack of advice

[Bells3032]

17 weeks pregnant here. So after 2 hours of waiting finally spoke to an obstrician today (over the phone). I explained some of my issues including severe hypermobility (possible EDS but never diagnosed) which has previously led to broken bones (including a spontaneously broken rib) and dislocated various joints including my pelvis which led to life long issues and are leaving me extremely anxious.

I asked advice on what to do during pregnancy/birth choices based on my history. his response was that they will induce at 40 weeks not 42 and I should speak to my physio (who i told him i hadn't seen in several years). didn't give me any other chance to ask questions and told me if the hospital wants me in for more tests they'll write to me if not he'll see me when I am about 30 weeks.

I feel like crying. 17 weeks and i've yet to see anyone face to face bar a quick scan and blood test. no real opportunity to ask any questions or advice. no one who seems to have any knowledge of hypermobility being able to advise me. I told them about it at my booking appt and they just wrote down "bad back".

Feel so unsupported and I have no idea what to do to make sure baby stays healthy and my joints stay as safe as possible.

Feel miserable :'-(

That sounds really rubbish. If I were you I’d ask your GP to refer you to a Consultant Rheumatologist so they can assess you for EDS that should help you access proper support with your pregnancy, considering your hypermobility. I’d also ask the GP to refer you to the women’s physio’s in the meantime.

I’m sorry you’re feeling so flat about this, it’s definitely tough. I have hEDS alongside a few other linked conditions, and am currently 29 weeks pregnant with our first baby. It’s a difficult one for sure, it’s a condition which isn’t well known or understood, and so it often isn’t taken that seriously, and unfortunately this translates over into prenatal care as well.
I’ve had no input at all regarding my EDS but have done a lot of my own reading, just for my own peace of mind. I did book an appointment to discuss with my GP as well, as she is actually one of the rare understanding clinicians, but it varies so much person to person, pregnancy to pregnancy, it was a bit tricky.
In terms of keeping baby healthy, just follow the ‘rules’ everyone else follows, vitamins, careful with what you eat, cut down caffeine etc etc. I couldn’t see that baby needed any more or less specific care than anyone else’s pregnancy, I just need to go easy on myself, while trying to stay active! Always a fun balancing act.

my biggest concern is my pelvic joints. the previous issue was spontaneous and literally took years of doctors appts and 18 months of physio with three different specialists to get to the point i wasn't in agony. I am terrified of this reoccurring and I am being given zero advice on the risks of this in relation to vaginal birth.

I was referred to the obs because of the hypermobility but the doctor didn't seem to have a clue about it.

Yea I know what you mean. I did get an obstetrician appointment as I’d already said, from the word go, that I wanted a c-section, but they were no help in terms of practical advice for during pregnancy.
Speak to your GP, see if they can refer you on to a specialist or physio.

As other poster mentioned, this is not a well known issue and so there's no specific plan for midwifes to follow.
I have hypermobility which was privately diagnosed during my first pregnancy.
I had to do lots of self education and trial and error until I found what worked for me.
Few suggestions:
Avoid any kind of stretching/yoga and concentrate on strengthening exercise. Especially around core/pelvic.
Find really good physio to help you along the way.
Osteopath was god send for me. I continued to regularly use them throughout pregnancy and at leat for 1 year after birth.

Do your own research first and then go to midwife and or consultant to ask for additional referrals/ treatments.
Good luck!

And yes, I did get elective c-section with the second as I was more knowledgeable about the risks and my condition by then

I'll be honest, they are not going to provide you with any help or support, because they don't know how to or what to provide. No point going to rheumatology because they don't diagnose EDS hypermobility type anymore.
You need a physio, private preferably if you can afford it. There are plenty around who specialise in women's health. You need to keep your muscles strong to hold you in place, which you should be doing regardless of pregnancy. You could even get into pregnancy pilates, but you must do a physio led class who will stop you from over extending. Don't do any stretching without specifically being advised by a physio.
You can get a bump support band but I found this absolutely useless, and I couldn't use crutches because of my unstable elbows and shoulders.
You are already having a C-section so things like the birthing position, and fast birthing won't apply to you. You do need to make sure you continue seeing a physio after the birth.
Other than that you shouldn't be affected, unless your anaesthetic for the C-section doesn't work properly, which there is a risk for with hypermobility. That's why I wouldn't choose a C-section if pregnant. There's also the bruising and scarring which is often more severe in hypermobile people. But I'm sure you are already aware of how your hypermobility affects you, far more than a midwife or OB consultant would.

In addition to what has been said above, if you are in or anywhere near London look into the British college of osteopathic medicine. When I had my DC they treated pregnant women free as was a supervised student. I'm hypermobile and it was a godsend as I had several issues.

These are the details www.bcom.ac.uk/clinic/treatments/price-list/

Can't recommend enough

@delilahbucket thanks for the advice. I've had 14 surgeries (under general, local and sedation) and never had an issue so i think it would be fine for me. But haven't agreed to c-section. Doctors still seem to be pushing vaginal just with earlier induction (which seems like the worst idea at all).

@cookiesandsleep and @Ughmaybenot can i ask why you pushed for C-section? I am debating to do this myself as well.

Of course. I had a few reasons really, mainly that I’m worse affected across my hips/pelvis and my back. I didn’t particularly think it seemed sensible for me to go through something which, by its very nature, puts that much strain on that area, opening up etc, risking pretty serious injuries. To keep my joints in a neutral position as opposed to risking dislocations unnecessarily definitely appealed to me. I had a few private appointments with dr Hakim in London (private specialist) and he was firmly in the camp that for me, that would be the best and safest option. My skin tears like nobody’s business, so you can see why I may want to control that a little more! I appreciate I will still need to heal from the surgery but that’s okay, I feel better about it being more under control iyswim. Lastly, I live an hour and a half from the hospital, and given our increased risk of fast labours, I wanted to minimise the chances of me being stuck somewhere on the a30 having my baby!
It’s so hard, it varies so much but I really believe a c section is the best decision for me.

@Ughmaybenot thanks so much. jesus your post could have been written about me. feel so reassured that I am not completely unique in this and that you've discussed it. My DH and I have been discussing going privately and i think this has made up made up our minds. My family also have very fast labours (my sister's labours were an hour for her first and 45 mins for her second), my mother and grandmother were similar.

When are you due?

Never alone, it just certainly feels like you are sometimes. To be honest, I would recommend private consultations if you can, purely to feel a bit more informed and to collate any questions which you might have about the condition generally, it was so helpful for me. Yes it is quite common, but that is alarmingly fast!!
Due start of November.

I have EDS and had similar concerns during my pregnancy, I was classed as high risk and was referred for an echocardiogram quite early on. I was also referred to physio and give advice on a pelvic support belt (this did help).
Last but not least I printed off this piece of research: www.rcm.org.uk/news-views/rcm-opinion/research-supporting-pregnant-women-and-newborns-with-ehlers-danlos-syndromes/

I gave it to my midwife who gave it to my consultant and we discussed it. I know my consultant had read it as she had her highlighted copy, we used it to inform my birth plan and I was referred to the anaesthetist to come up with a plan in case I needed a c-section. They also put a plan in place to help me heal. Hope that helps.

Oh, and fwiw, I had to be reasonably pushy about approval for a c section. The consultant started the appointment by saying she knew nothing about EDS but still tried to argue with my reasons for requesting one, which was fun. I did have to be quite firm.

Similarly to Ughmaybenot I wanted to minimise the stress to my pelvis during birth and minimise my high risk of tearing/ prolapse.
I was also not physically capable (hip/pelvis pain in 3D trimester) to carry out with active birth which ment very high chance of complications and assisted delivery.
In the end, please remember, it is your body and you have a final say on what is best for you and your baby.

Hope this helps

Without being too outing I have a friend with this but it's formally diagnosed so I can tell you what she has told me. But without a diagnosis I think it will be hard for them to make a concrete plan based around your hypermobility as, kindly, it's not much different to any other lady going in with concerns about things that aren't formally noted.

My friend was induced early but for different reasons with her first and she couldn't have an epidural. With her second her options are spontaneous vaginal delivery, induction without epidural again, or an unconscious caesarian..this is all tied in with her EDS which means she can't have spinal anaesthesia.

Can you get in touch with your midwife to follow up your obstetrician conversation? Although to be honest I've been consultant led for something different from the start, apparently, but they didn't make any contact until the third trimester as they need to see how things are going generally, they couldn't do anything for me before we needed to start thinking about birth options but I have had those conversations with the midwife.

Your midwife appointments will be more frequent as the weeks go on but perhaps you need to chase with your GP about getting a diagnosis for hypermobility to get your maternity care plan based around that? The midwife can only go on what's on your records and what she sees on front of her although I appreciate you haven't yet seen anyone face to face you can still ask all those questions on the phone.

Make a big list of questions, try to get hold of your midwife now you've had your first consultant appointment, and see if there's anything else you can do to get a formal diagnosis of hypermobility and/or EDS so it's actually on your notes.

Thanks for all the advice. just to be clear I have a formal diagnosis of Joint Hypermobility Syndrome just not of EDS.

I have hyper mobility through my lumbar spine and pelvis. It made no difference to my consultant but I’ve been struggling with PGP from first tri which they’re putting down to the relaxin. I have cranial osteopathy every 3 weeks and have continued this through pregnancy. I am also working with a private physio that specialises in this.

So far (22 weeks) I’m in low grade pain but functioning fine.

You should probably wear a Serola belt to support your pelvic girdle. Pelvic Partnership might advise more.

Ah ok I misread your first post OP, sorry. In that case would you be able to contact the physio as the consultant suggested, or get that restarted somehow maybe through the GP? My midwife did offer me a referral to physio so they may be able to do it directly but I don't know how that side of things works if you're already on the books?

Physio offer was for pelvic floor/previous diastasis, not sure if that makes any difference.

Thanks guys. This was the kind of advice i was hoping for. Gonna do some research into the belts and the physios/osteopaths etc. Gonna have a push for c-section or at least discussion of the options and risks