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  1. #81
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    Quote Originally Posted by tastychicken View Post
    I have eds classical and marfan's syndrome. I caught the awful double whammy. All my symptoms are able to be controlled by lifestyle which is good but pregnancy really is taking it's toll already.

    Now pregnancy is not at all fun. I have had 2 early children due to PROM. I have a retained placenta with my first. I have post postpartum hemorrhaging with both my children. I have had 13 miscarriages since my daughter to now as placenta's can not attach properly so every one up to now has been before 7 weeks. My defects are dominant so there is a 50% chance each of my children have at least 1 disorder inherited. During labour there is a chance of uterine rupture so i have a c-section booked for 34 weeks unless i go into labour before that.

    I have only sublaxed my hip once. That was during labour with my daughter. The stupid evil ward midwife refused to get the ob so i could get more intense pain killers as apparently it was (after pains).
    Oh wow. EDS is hard enough without Marfan's as well. I'm so sorry. I can't even imagine how hard it must have been to loose 13 babies. I've had one suspected mc but drs can't confirm as I didn't know I was pregnant.

    Do your children show signs of EDS?
    Im still struggling with the thought that its a 50/50 chance.

    How far along were you before you had PROM?

    sorry for all the questions I just want to be as prepared as possible.

    Thank you for taking the time to tell me about your experiences it means a lot.

    Xx



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  2. #82
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    Quote Originally Posted by PurpleLove View Post
    Oh wow. EDS is hard enough without Marfan's as well. I'm so sorry. I can't even imagine how hard it must have been to loose 13 babies. I've had one suspected mc but drs can't confirm as I didn't know I was pregnant.

    Do your children show signs of EDS?
    Im still struggling with the thought that its a 50/50 chance.

    How far along were you before you had PROM?

    sorry for all the questions I just want to be as prepared as possible.

    Thank you for taking the time to tell me about your experiences it means a lot.

    Xx



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    After the first few and discovering why it happens, not so much pain but just kind of annoyance. I made the decision a long time ago that it is best to loose hundreds of babies if there is a hope of having 1 more, then always wonder what would be a give up. I am 9 weeks at the moment and all (holy cow i have not miscarried yet). My partner is really supportive and he has gone through many misscarriages too. He wont even start getting excited until the baby is viable as it is too painful for him. We also don't talk to people about it as it is not right to include others in this journey. Imagine if we told his parents that their son may never have kids but every few months gets to know the pain of a child dying? Yeah not so cool.

    My children both show markers of EDS and marfans but my partner and i have decided that we will wait until a medical issue arises before getting them genetically tested. This way they will be older and have a say in the process.

    I had prom with my son at 36 weeks and he was born a day later. my daughter had prom at 28 weeks and she was born at 30 weeks.

    Another thing i found associated with my condition is that my body does not produce breast milk. This is not uncommon is EDS sufferers.

    I think it is most important to realise that most people with eds especially type 3 do not have issues with pregnancy and childbirth. I am type 1 so things are a bit different.

  3. #83
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    Quote Originally Posted by tastychicken View Post
    After the first few and discovering why it happens, not so much pain but just kind of annoyance. I made the decision a long time ago that it is best to loose hundreds of babies if there is a hope of having 1 more, then always wonder what would be a give up. I am 9 weeks at the moment and all (holy cow i have not miscarried yet). My partner is really supportive and he has gone through many misscarriages too. He wont even start getting excited until the baby is viable as it is too painful for him. We also don't talk to people about it as it is not right to include others in this journey. Imagine if we told his parents that their son may never have kids but every few months gets to know the pain of a child dying? Yeah not so cool.

    My children both show markers of EDS and marfans but my partner and i have decided that we will wait until a medical issue arises before getting them genetically tested. This way they will be older and have a say in the process.

    I had prom with my son at 36 weeks and he was born a day later. my daughter had prom at 28 weeks and she was born at 30 weeks.

    Another thing i found associated with my condition is that my body does not produce breast milk. This is not uncommon is EDS sufferers.

    I think it is most important to realise that most people with eds especially type 3 do not have issues with pregnancy and childbirth. I am type 1 so things are a bit different.
    Yes I can understand that you would be annoyed. It must be incredibly frustrating to constantly be on edge waiting for the worst and not being able to share it with your families. You both must be incredibly strong.

    My mum has never shown signs of eds but had went into labor prematurely with both my brother and I at about 28 weeks. Luckily they were able to prolong it until we were both full term. But my geneticist now says that's a sign she has eds mildly.

    The non production of breast milk is interesting and handy to know. I haven't heard that before.

    I really hope this pregnancy works out for you both. ❤

    Thank you for all the info.

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  4. #84
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    It i not waiting for the worst which is annoying, as we have both kind of got over that. It is the annoyance of not being able to jump up and down and dance about like fools and celebrate getting pregnant and the excitement it brings to other people. I see the threads about people all excited about a BFP and when i get one i am all. Ok yep.

  5. #85
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    Quote Originally Posted by tastychicken View Post
    It i not waiting for the worst which is annoying, as we have both kind of got over that. It is the annoyance of not being able to jump up and down and dance about like fools and celebrate getting pregnant and the excitement it brings to other people. I see the threads about people all excited about a BFP and when i get one i am all. Ok yep.
    Yeh that's understandable. It can't be easy seeing everyone else celebrate for a bfp when You should be able to have the same happiness and can't. Fingers crossed this time is different and you will get to celebrate soon.

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  7. #86
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    Hi everybody, I haven't been on here for a while so I hope you are all doing good. With fibromyalgia i have had flare ups where I am just extremely tired and sore but usually I wake up with it. Today about 20 minutes ago actually I have had a extreme sense of fatigue wash over me, I am fighting to stay awake after getting home from school pick up is had to sit in the car for a few minutes to tired to move which isn't that strange but the way it suddenly come on has never happened to me before. Has anyone else had it occur suddenly? Where one minute your fine and the next so tired that a few steps is like a marathon?

  8. #87
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    well looks like my Classical EDS may have been misdiagnosed and I am looking at having Vascular type 4 EDS. I need to get full genetic testing done again and hope that i don't as that will mean up to a 35% chance of death during this pregnancy!

    Apperantly the doctor who diagnosed my classical eds didn't take into account the fact i have had a uterine and intestinal rupture before.

  9. #88
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    Quote Originally Posted by tastychicken View Post
    well looks like my Classical EDS may have been misdiagnosed and I am looking at having Vascular type 4 EDS. I need to get full genetic testing done again and hope that i don't as that will mean up to a 35% chance of death during this pregnancy!

    Apperantly the doctor who diagnosed my classical eds didn't take into account the fact i have had a uterine and intestinal rupture before.
    Oh crap. I'm so sorry @tastychicken
    Any EDS diagnosis is hard to hear but vascular would be very very hard to hear.
    When will you know for sure?
    I hope its asap so you don't have to stress and wait long. Will be thinking of you. If you need anyone to talk to I'm always free to chat. Even if you just need to vent. Lots of hugs. ❤

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  10. #89
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    It may take up to 6 weeks for the full testing as type 4 needs certain markers to affect collegen 3. starting tomorrow i get to have very regular echo-cardiograms to monitor my heart and lungs.

    The doctors have mentioned that i may need to look at terminating as i may be close to 19 weeks by the time the testing comes through. I don't think i could do that as my baby is fine and healthy and i don't think my body will hold up to another pregnancy later on in time, my joints are so sore i may look at what pain killers i can take on an ongoing basis while pregnant.

    I feel kind of ripped off as i am at 13 weeks this week and i was looking forward to telling everyone that i am pregnant after so long but now i feel like i need to hide it for longer (at least 23 weeks which is viable with intervention) in case i need to terminate due to my heart.

    I feel kind of annoyed that it may have been misdiagnosed when i have been looking around dr google and apparently the huge markers for eds type 4 is the bruising.

  11. #90
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    Oh you poor thing. You must be heart broken to have them talk about terminating. It would be such a difficult decision to make. Make sure you double check everything with a geneticist and genetic counsellor as I've had a LOT of uninformed Drs throw statistics at me about EDS which were all completely wrong according to my geneticist.
    If it helps I have a couple of friends on edsaus site that have type 4 quite severely but had no issues with pregnancy.
    Have you signed up to the edsaus forum? I find it really helpful for finding others who have gone through the same issues.

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