Pregnancy and EDS
Posted: 01 October 2016 11:00 AM   [ Ignore ]  
Total Posts:  1
Joined  2016-10-01

Hi everyone. I was just recently made aware of my hypermobile EDS and was on the path to seeing a geneticist and getting treatment for my various related conditions (chronic migraines, severe acid reflux from hiatal hernia, joint pains and dislocations, endometriosis) when my fiance and I decided to get pregnant. I have so many concerns about the baby and fears of being super pregnant. Although the pregnancy was planned, I don’t feel prepared for this, and I feel like I could have done a much better job of getting a handle on my health BEFORE adding another layer to my pain.

I’m now 12 weeks along. Currently, I have hyperemesis, severe leg and arm cramps, and disabling fatigue which are supposed to improve by 20 weeks, but what if they don’t? I’m miserable right now and terrified about how I’m going to feel when I’m towards the end of my third trimester. Luckily, my OB knows a lot about EDS, so she already has plans for how we’re going to proceed with the birth. She thinks I’ll probably need a C section, which is both a relief and more reason to be nervous. I’m concerned that the things they give me for pain and the anesthesia for the C section won’t be strong enough, but I don’t want to potentially hurt the baby asking for more of these heavy duty drugs. And what about the C section? I’ve never had such a serious surgery before. Should I request to stay in the hospital longer since healing will take longer?

I’m really hoping to connect with some moms with EDS. It’s so hard to find support for something so specific as moms with chronic illness, especially something like EDS. Any advice or stories from other moms would be greatly appreciated.


Posted: 20 October 2016 03:53 PM   [ Ignore ]   [ # 1 ]  
Total Posts:  1421
Joined  2011-04-19

I’m so sorry to hear how hard this is for you. I just wanted to give you a glimmer of hope. A C-section may be needed, I don’t know, but for some of us, a vaginal birth is easy-peasy because we stretch a bit easier than others. My mom used to say she was a baby making machine! Delivery was (relatively) easy (and quick!) for her. I had no problems with a vaginal birth for my kids and had one bonus from the EDS—NO STRETCH MARKS! Amazing. I hope things improve for you soon. Pregnancy can be tough, I know, but please try to stay focused on the end reward—smiles from your new baby. Gentle hugs…


Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese