Eds and pregnancy

I was just wondering if anyone can share their stories on getting pregnant and how it was for them from a physical aspect? How it affected your body etc

Thank you xx

[cyberbarn]

I had no idea I had hEDS/HSD until my son was 13 and diagnosed with hEDS. So I went though pregnancy with no anxiety about it. If I had know would I have done things differently? Probably not.

I did show sooner than many people, so at 20 weeks people started asking when it was due thinking that I was either a lot further along or was having twins. This may have been because of the laxness of muscles, but it wasn't really a problem.

Then I remember the day when I was taking my dog to see an osteopath and he asked how I was. I said you know that joint in the pelvis that isn't supposed to move, the SI joint? It's moving. But it wasn't a problem, I just waddled a bit.

I was walking a lot. 5-10 miles a day, over field and dale, because I had two large intelligent active dogs. I also swam until I started sinking too much with the excess weight. I actually took the dogs for a walk on the morning I went into labour.

Woke up at 6 with a contraction, started having them every 20 minutes, so at 8.30 I took the dogs out for their last walk before they went into kennels (I was a single parent by then so no one at home to take care of them while I was in hospital). The walking shifted the contractions to every couple of minutes. I walked through them all, but the walk which would take 25 minutes when I was super fit took an hour.

Got back home, rang my ex to ask him to pick up the TENS machine, and to put him on standby to take me to hospital, then had a bath. Eventually he arrived sometime after 11, and around 12 I rang the hospital. They told me to come in, no hurry, first baby, it will take ages.

Got to hospital around 1, contractions very close together. They are relaxed and unworried, until they examined me and realised I was already 10cm!

The only hiccup was that Son had the cord around his neck so I was pushing for longer until they managed to get him down far enough to cut the cord, then he was out on the next push, around 3.45.

Pain relief? A broken TENS machine (I dropped it on the floor when I moved into the delivery room but refused to let them take it off as I was convinced it was still working) and gas and air, which ran out at some point only no one noticed, not even me, until they went to stitch me up!

So it was easy, fast for a first, not very painful at all. But then I went into it not being worried or anxious, but relaxed, happy, and planning to enjoy it. If you expect the worst, you will end up being anxious and the worst will happen, if you go in for a gentle natural birth, then that is what you will have.

What would I have done differently? Definitely would have had a water birth if that had been available but it wasn't at the time. And the stitches did fall out sooner than they should have, so I think if they knew I had EDS they might have done that differently.

Do you know about the paper published on pregnancy and EDS?

magonlinelibrary.com/doi/fu...

Good luck! And if you get pregnant, have fun

[Hidden in reply to cyberbarn]

Thank you for your reply! You are right I do think knowing the situation you then go into it with anxiety and you make things worse for yourself mentally which then affects you physically.

I’m glad it wasn’t too much of a bad experience for you, I have been told that I will probably have to have a c section and not a natural birth to be on the safe side. I just read through that article thank you very interesting and gave me a lot of insight.

My EDS doctor did say the sooner I start the better I am 27 so it’s something I have been thinking about as I also have endometriosis.

Thank you xx

[cyberbarn in reply to Hidden]

I was 36 when I had my son. I would say it is more important to make sure you are fit before you get pregnant than to worry about your age.

The other really important thing is to think about breastfeeding afterwards. You will be tired, but breastfeeding takes less energy, especially if you co-sleep. And keep an eye on your posture during the day while breastfeeding. Make sure you prop yourself up well. I kept getting a lot of rib pain on the left hand side, until a friend of mine sat and watched me through an entire feed and said I was slowly listing to the side! So I got either cushions or the dog to prop me up. Breastfeeding was great because it means you have a good excuse to sit down and rest, and not feel you have to be up and doing the housework!

[Itsallinthehips]

It’s been awful tbh , a very hard long road. I’ve got it really bad to where I’m on crutches and wheelchair and house and bedbound before I even got pregnant, I was 6.3stone when I got pregnant due to other health conditions that my EDS has caused (bowel problems) as well so I was tiny.

I’ve been high risk from the beginning and had growth scans booked in from 13 weeks.

The first trimester I had a lot of bleeding due to my bowel issues.

Second trimester was ok but I was really tired

Third trimester The extra weight and SPD have made it nearly impossible to even get up anymore (35 weeks now) I’m fully bedbound. I can’t use the ball or anything I can’t stand up for more than 5 mins

My consultant and me have agreed my hips absolutely cannot take labour (labour with my son went bad and really messed my hips up worse) so I’m booked in for a few weeks.

I think it very much depends on how your EDS effects you normally and day to day etc

I say all this but this baby is totally worth every tear and second of pain as we ttc for so long

I hope you have a good pregnancy and feel free to message me if you need any help x

[Hidden in reply to Itsallinthehips]

Thank you for sharing I’m really sorry to hear it’s not been an easy journey! Do you mind me asking how old you are? I’m 27 and my EDs doctor said the sooner I start the better!

My EDs is not severe but as I’m getting older and have endometriosis I am getting weaker so that’s something that’s worrying me if I will be too weak to carry the baby. She did say I would probably be bed bound and not be able to work from the beginning of the pregnancy and need therapy before during and after.

Thank you and good luck with the delivery and the next few weeks xx

[Itsallinthehips]

It’s been awful tbh , a very hard long road. I’ve got it really bad to where I’m on crutches and wheelchair and house and bedbound before I even got pregnant, I was 6.3stone when I got pregnant due to other health conditions that my EDS has caused (bowel problems) as well so I was tiny.

I’ve been high risk from the beginning and had growth scans booked in from 13 weeks.

The first trimester I had a lot of bleeding due to my bowel issues.

Second trimester was ok but I was really tired

Third trimester The extra weight and SPD have made it nearly impossible to even get up anymore (35 weeks now) I’m fully bedbound. I can’t use the ball or anything I can’t stand up for more than 5 mins

My consultant and me have agreed my hips absolutely cannot take labour (labour with my son went bad and really messed my hips up worse) so I’m booked in for a few weeks.

I think it very much depends on how your EDS effects you normally and day to day etc

I say all this but this baby is totally worth every tear and second of pain as we ttc for so long

I hope you have a good pregnancy and feel free to message me if you need any help xx

[EDS3Sara]

I didn't know I had hEds until after I had two babies. I felt great during both pregnancies. In retrospect, my POTS was better due to having more blood volume during pregnancy.

I had complications with first baby (Umbilical cord was wrapped twice around her neck and she stopped moving and I never went into labor) and ended up with a c-section.

Second, I had SI issues more than usual, but I used my tens unit and just kept going like we all do...

I tried VBAC and because of hEds I almost ruptured. At the time I didn't know why, but it was because I didn't heal well Internally from first csection.

I ended up having an emergency c-section after laboring for 30 hours. That was fine, but I was exhausted. I'm sure had everyone known about my hEds, they would've sewed me up differently. I went to physical therapy afterwards to help with my hip and got that back under control.

All of that said, I'm ok and I have two beautiful girls.

Good luck with whatever you decide to do. You know what you can handle. Shop for OB doctors that understand EDS.

[Hidden in reply to EDS3Sara]

Thank you for sharing! That’s interesting about the POTS I always wondered how it would be affected during pregnancy!

I’m glad to hear the experience wasn’t too painful for you, I have been told that having a c section will be better for me.

Thank you x