Anyone have Ehlers Danlos Syndrome hypermobility type (type three)?

[jenna.yos]

I have EDS type three and my husband and I have spent two years discussing whether or not I should conceive. We've thought through the health concerns for me and baby and we finally decided we want to try. I'm on my first round of clomid this month. I haven't been able to find many other women who have EDS and are TTC or already have a child to compare notes with and I wonder what resources are out there for people with EDS who have families or are TTC.

My EDS can be pretty bad sometimes. I've just finished a round of physical therapy which has helped some but a lot of my joints are very loose and shift around causing global chronic pain. I also have arthritis, spondylolisis and spondylolithesis which are associated with the EDS. I have a great perinatologist and obgyn who are aware of my health issues and are working with me to do what is safest for both me and my potential baby.

My husband and I want a family and like I said, we've thought a lot about what to do. I'd just really like to connect with someone who has had to go through the same decision. If anyone knows of other forum threads or books or anything that might help me out, I'd really appreciate it!

Only a few more days until I can test to see if the clomid did the trick this round!

Thanks!

Jenna

 

[Coco Tutu]

Hi Jenna! I am sorry, I cannot help, I just didn't want to read and run. Good like trying to TTC and I hope a lady with a similar issue will come here to give you support and advice

 

[Hazybaby84]

Hi Jenna, I have EDS 3 but mine is fairly mild in comparison to yours, I'm afraid I didn't have that choice to make as my EDS wasn't diagnosed till after my dd was born. They never picked up on any of it until I was told i hypermobile by my chiropractor a year after I had her then it was officially diagnosed by my rheumatologist when I finally got referred by my gp. I am happy to help you as much as I can, tell you about my pregnancy and answer any questions you may have to the best of my abilities. x

 

[jenna.yos]

Hi, thank you both so much for responding. Hazybaby, looking back, now that you know you have EDS, can you see if or how it may have made an impact on your pregnancy? Sadly, AF just arrived after my first month on clomid so I'm still not pregnant yet but hopefully this month will go better! I get worried that there might be a day I'm too sore to hold her as much as she needs me or something. Most days are better than I used to be. I'm no longer working and I've been through a lot of physical therapy which has really helped but some days are still hard. I have a fracture in my back along with degenerative disc disease and a reverse curve in my neck and I have arthritis already. I'm only 28. My husband and I really want a family and any tips you might have about how you managed any pain you had while pregnant would be awesome! I'm a little down about everything right now but I know part of that is because of all the hormones in the medications!

Thanks guys,

Jenna

 

[Mummy2B1989]

Hi I do! My mums seems as bad as yours if not worse and she had 2 normal pregnancies. My pregnancy was okay I did have severe pelvic pain and crutches but it disappeared as soon as he was born. I still take a cocktail of painkillers but wouldn't say the eds has had a large impact x