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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

EDS and pregnancy/birth

7 replies

planner10 · 13/09/2020 11:03

Hi just wondered if anyone has this and how it affected their pregnancy, and specifically the birth (eg anaesthetic intolerance)? Personal experiences seem light on the ground so be great to hear from anyone & any advice you can give! (It’s the Hypermobility type - don’t think I have the other types but tbc). Thank you!

OP posts:
Twilightstarbright · 13/09/2020 11:28

I have hEDS but it wasn't diagnosed until after I had DS.

I had a planned C-section, anesthesia was fine and my scar healed pretty well.

Pregnancy was tough as I also have pots and I was in the minority who deteriorated during pregnancy and was on partial bed rest from 20 weeks. I had PGP and SPD, if I had known I had hEDS I think they would have intervened earlier with it.

Happy to answer any questions you have Smile

Best advice post partum is get the lightest pram possible and a decent sling- it distributes the weight across your body so shouldn't strain your joints. Oh and don't do mum and baby yoga unless the teacher really knows what they are doing as you'll be very very bendy and need to not go too far in a pose!

Yellowhana · 13/09/2020 11:36

Following with interest as a FTM (currently 23 weeks) with hEDS.

Dosent seem to be something my midwife has ever dealt with!

SarH89 · 13/09/2020 12:01

Hi there! Congratulations on your pregnancy. I’m following with interest too. I’m a FTM to be, currently 25 weeks. How have you been feeling so far?

So far my joints have been more painful which was expected and I also have complicated gastric problems which have worsened. I’m continuing with 1:1 Pilates with someone experienced in EDS and also monthly NHS physio which is helping with joint pain and just learning what’s best to do/not do in pregnancy. Also a pelvic support belt has helped with SPD pain.

I’m receiving consultant lead care and due to have a planned section because of multiple previous bowel surgeries and meshes. Have you been offered an appointment with an anaesthetist? I’ve got one scheduled to discuss anaesthetic concerns and my consultant has also said if once they give me the anaesthetic it doesn’t work properly or I can feel anything they will switch to a general.

There is some good info on the EDS UK website about pregnancy and birth.

EithneBlue · 13/09/2020 16:47

I have hypermobile EDS - I'm 30 weeks and have had an incredibly smooth pregnancy so far. I was warned I would likely suffer from all sorts of joint issues/pain but seem to have almost completely got away with it so far (even being back at school and on my feet all day). I do have some hip pain (and a weird thing where I can't always move my left hip) but it's pretty mild. I was training 1-2-1 with a PT before lockdown to build muscle strength and I have kept up regular exercise which I think has helped (lots of walking and lighter weights at home). The only things that have been slightly worse for me are the fatigue and the stress incontinence (which I already had so now I REALLY have to cross my legs when I sneeze). Do your pelvic floor exercises!!
Of course saying that, the next 10 weeks could be terrible, but I'm an optimist: it's probably fine ;)

foreverfrustrated09 · 13/09/2020 16:57

following to ! onyl 9+2 but got hEDS with a query of classical. im under a consultant for a few reasons, i was born prem partialy due to my mums eds so thats a worry. ive been offered an anethatist appointment as local anaesthetic has no effect on me atall and my veins average about 9 attempts a go! im worried about it so would be good to get some real life experince

timetest · 13/09/2020 17:06

My daughter has EDS. Her consultant recommended that she have a c section. She was fine throughout most of her pregnancy but the last 4weeks were challenging with almost daily dislocations. In the end it was decided to bring her cs forward by a couple of weeks. She had a discussion with the anaesthetist who was clued up on Eds. The op itself went well and she recovered pretty quickly.

DollyScrobbler · 14/09/2020 00:29

Both my daughters have EDS (hypermobile).

Both have had early deliveries after their waters broke - 38 wks, 37 wks and 34 wks.

Spinal blocks only worked on half of the body when one daughter had to have manual removal of placenta (twice). It also took three anaesthetists, 6 hrs and an ultrasound machine to find a vein for a cannula. If the needle isn't inserted correctly the first time her veins appear to collapse. She's had cannulas in her thumb, elbow and foot in search of a vein.

Both had SPD - needed crutches and wheelchair. Can't walk much after 20 wks.

Both lost an amount of mucus plug whenever they had 'overdone it' the day before. So take it easy.

Both had multiple dislocations from sleeping on their sides - shoulders.

Both had fast labours.

Both lost a lot of blood - transfusions.

Both struggled with shoulder pain whilst breastfeeding.

Both were unable to use slings due to discomfort.

Older daughter currently expecting her third (second within 12 months). She is using crutches and is having lots of problems due to autonomic dysfunction.

This will sound 'woo' but she has dreamt her previous two delivery dates and been correct - she's dreamt this one arrives at 36 wks in her bathroom.

She was told to arrive at hospital at 9am, 24hrs after her waters went with her first. She arrived saying she was contracting every 10 minutes and was in pain. She was given 2 paracetamol. The midwife immediately observed her 'pushing' at the end of a contraction - she was fully dilated already, they said there was no need for gas and air as it was too late.

They have been consultant led due to their condition but most medical staff who have contact are unaware of any possible complications/never heard of the condition.

They were diagnosed three years ago. After my older daughter had her first child (and a huge hernia during labour).

As children they learned to live with many subluxations and dislocations without being investigated further. All their other problems - digestive, autonomic dysfunction, fatigue - made sense when they got their diagnosis.

My daughters are brilliant mums. I have three wonderful grandchildren.

I will say this - possibly due to the pain and discomfort they've suffered throughout their lives, they've both described labour as 'not that bad' (they joke about the speed of delivery and lack of need for pain relief).

Having this condition makes you aware of possible complications so that they can be anticipated and dealt with appropriately.

I now realise that my mum was hypermobile and also myself to a lesser extent. My mum was a contortionist - extremely bendy. I used to dislocate my knees and shoulders regularly as a child and also had to use a wheelchair in pregnancy because of 'separated pelvis' as I was told it was.

Hope the grandchildren don't have this.

Pregnancy pillows and breastfeeding pillows recommended. Both daughters like the swivel car seats so you're not over reaching to put baby in the car seat. They both had difficulty carrying the newborn removable car seats. They both have lightweight carrycot/pushchairs. They found lying down to breastfeed the most comfortable position. They preferred to use a changing table when the babies were young as it was easier/more comfortable for them.

My younger daughter's digestive problems greatly improved whilst she was pregnant but have gone back to her 'normal' about four months after the birth.

Good luck with your pregnancy.

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