New here, anyone with Ehlers-Danlos?

DesMomma

My husband and I are currently TTC and I was told by my OB that I will be considered high risk due to having Ehlers-Danlos Syndrome (EDS) type III. While I had it during my first pregnancy I didn't get diagnosed until 6 months after I had my son. My condition has also progressed and worsened since having him. They want me to see a MFM before I actually get pregnant but because of my location it is hard to get into one. They come to our town once a month. I was told that most likely I will have to see a specialist out of town every month and if anything goes wrong I will most likely be sent to St. Louis MO to stay the duration during my pregnancy.

Does anyone here have EDS III, what has your experience been like? For any of you that knew that you would be high risk before you were pregnant how did you wrap your mind around that. I had GD my first pregnancy which I know I will likely have again this go around. They never treated me high risk with that though.

TIA

kateitho

    I don't have EDS, but I do have Marfan Syndrome which is considered a "sister syndrome".  Until 3rd trimester I had to see my OBGYN every 4 weeks, my MFM every 6 weeks, and the cardiologist every trimester.  Now that I'm entering third tri, I'll see my OB every 2 weeks, my MFM every 3, and the cardiologist at 29 weeks, 32 weeks, 35 weeks, and 1 week post partum...  

    I was very worried in the beginning, but honestly, I feel so cared for and nurtured, that it's crazy.  I love knowing that we would most likely know of any issues before they are life threatening, and the ultrasounds every 4-6 weeks have given me such peace of mind!  I love my care team, and they know what to look for.  It's scary, but I'm convinced it's all worth it in the end!

    Good luck!

DesMomma

Thank you for sharing your positive story with me! I saw the MFM today for the first time.

proudtobeazebra

@rachaelrnr - I'm so glad that I saw this post - I also have EDS type III and I'm TTC. I was actually turned away from one clinic because they felt I was too high-risk. I had a consult with a genetic counselor, which was really productive and reassuring - they discussed EDS and my medications, and basically said that it would be considered high risk, but nothing like the first clinic suggested.

I also saw a MFM for a preconception consult a few weeks ago, and it went really well. The doctor walked through a few things that may be more common in individuals with EDS, but assured me they were perfectly comfortable managing them just like they would a regular pregnancy. They also mentioned that I may have to have ultrasounds more frequently than a typical pregnancy. I walked away feeling much better and more prepared. I hope that your consult went well! If you ever need to talk/vent, feel free to PM me. 

DesMomma

@crawford411 I know that preterm labor and preterm rupture are some of our biggest risks is cervical insufficiency part of the reason we are prone to preterm labor? I thought they may have explained it to you. Unfortunately my OB isn't very knowledgeable about it but she was very quick to send me to an maternal fetal specialist in a St. Louis. My first pregnancy went relatively well considering I made it to 39w6d. My pelvis spread too far (can't remember what they call that) and had some pain issues. But my EDS definitely worsened after my pregnancy. The MFS said that wouldn't necessarily indicate that this pregnancy would go any different (currently 4w5d pregnant) I really worry about chasing after a 2 year old, being pregnant, and having EDS. I am worried my hip will dislocate and I will fall down the stairs or something. Is this your first pregnancy?

@swimmergurl1105 people with HEDS aren't nearly as high risk as someone with VEDS or other types. My current MFS is carefully researching my records to make sure I don't have any signs of VEDS. I know I don't have that. Is this your first pregnancy I take it? Are you off all of your meds now that you are TTC? That was the first thing my doctor made me do was wean off of everything before even TTC, which let me tell you has been a bitch. I have been off of meds for...4-5 months and will be for at least the next 2 years (plan to nurse for at least a year). It is scary and it is hard. But I like to think we are tougher than with everything we go through. I would love to talk more to you about it.

I would love to keep in touch with both of you. I think we could be good support to each other!

Thanks for responding ladies.

DesMomma

I hope it keeps going well for you! Feel free to PM me anytime.

2000cougar

I was also diagnosed during my 1st pregnancy with type III. The best thing was that my first delivery was a breeze. I hope this one goes as easily. I switched OB's because my former OB made me a nervous wreck. They treated me like I had type IV. This time they're taking it one day at a time and are much more relaxed. I have a few weeks left before I go on bed rest. My EDS affects mostly my spine, hips and pelvis. It's been horrible this pregnancy. I can't get around well at all because things keep subluxing. The nice thing about being high risk is getting the extra ultrasounds at MFM. Their machine is so much better than the OB's. 

proudtobeazebra

@rachaelrnr - Yes, I'm TTC my first. I know I don't have VEDS and my ECHO was normal, so I think they're mostly worried about PROM and preterm labor. In terms of medication, none of my doctors seemed particularly interested in weaning me off of my medications - I'm not really on anything for pain, so that may be why. I have a wide variety of health issues, so it may be the case that I'm simply not able to go off of some of them. I hope that you are doing well!