Has anyone with EDS had fertility treatment/issues with pregnancy?

Hi there

I am new to the forum. Have EDS type 3, POTS, syncope and for the last 3 years been through hell. Finally getting some answers but it's been tough. With everything that happened the last few years (falling ill, loosing my job, having to relocate back to my mum's in rural middle of nowhere I wasn't in the right space to date) hence it now happens that I find myself 37, single and looking into egg freezing. The odds are not great anyway given my age/actual antral follicle count and AMH level but I am beginning to look into research into EDS and POTS and pregnancy and would LOVE to hear from anyone whose had experience of the following:

1) EDS/POTS and pregnancy/natural conception - did you have issues? did you carry to term or where you prem? did you notice issues with pain/fatigue and or complications?

The research seems to suggest some hormone changes can help EDS and I have found some posts suggesting no issues with pregnancy.....other seem to suggest greater risk of miscarriage

2) Has anyone with POTS/EDS had a miscarriage or issues with labour?

I am aware that those with EDS/POTS issues may require more support than usual in looking after a baby and coming from a single parent family background I don't think I want to do it on my own. But it appears I may not have many options so am currently exploring the possibility of eff freezing with view to then, in the future, re-implanting either egg/embryo when I am either in a relationship or with more other emotional/financial support. Excluding the genetic component (I have EDS type 3 and aware there is a 50% chance of passing it on) and the usual stats on abnormality in embryo/egg quality in later age, is there anyone out there with insider knowledge or research on this?

3) has anyone undergone IVF and seen interruption in cycle and or issues with different hormones for either EDS/POTS?

I think if having aggressive IVF treatment to release a number of viable eggs I need to know more about the impact of hormones and/or when your body things it has extreme PTS and EDS/POTS and also would love to hear if there are any examples of better meds etc

Many thanks everyone!

6 Replies

  • I understand your desire for a child but do think and research carefully.

    I am the genetic carrier - although I only found this out following the birth of my second child.

    My first has EDS relatively mildly, my second - born five years after has a complex vascular EDS and is disabled by this.

    I struggled with my first pregnancy following IUI due to unexplained infertility. I had three miscarriages.

    I still didn't know about EDS. Similar situation with my second- another IUI pregnancy with four miscarriages one of which was his twin.

    Both labours were long and difficult.

    We found out about the EDS connection on my second child's first birthday as he wasn't developing his motor skills and was very floppy.

    It's certainly been a journey since then, and my children were and are wanted and adored. I wouldn't be without them, but it has been emotional, costly in more than just financial terms and the care my second child needs will be lifelong.

    All children present with a commitment for life, but an EDS child may require lifetime care and support.

    If you have a support network in place and an awareness of the impact, the increased baby care and the need to get support in school- it's not just early years you will be fine.

    Nothing is as strong as a mothers love for a very much wanted child, believe me. I wouldn't be without my children they are everything to me. I just wish they didn't have EDS.

  • Hi,

    I have had 5 children I have Eds type 3, pots etc its endless, I had all my children early the 2nd being the earliest at 24wks 3rd 30wks and the twins at 32 wks, m first tried at 28wks but held on till 36wks I also had 21 miscarriages, I was un-diagnosed I was told numerous reasons.

    I now have 4 children with EDS type 3 with my 3rd dying at 10 days old. It has not been easy but it is worth the struggle, My sister also with type 3 decided not to have children especially after seeing me. However I changed my life choices a few years ago and now am not confined to a wheelchair any more and do not rely on painkillers but alternatives. There are was to be healthy and fit, my only wish is that I had know this before I got pregnant. My first child was born naturally and was super quick. However all the others were c-sections, being sterilized with the twins which unfortunately the anesthetic wore off and I was not believed even screaming and being sick on the operating table. Having children with EDS is hard due to guilt but my children do not let it stop them doing anything, The have sublaxations etc which is dealt with by myself now and any pain is treated holistically including having acupuncture when needed. Please check my previous posts where I went from despair to now being 100% positive.

    Good luck

  • Hi, I have EDS3 and used to have PCOS, plus I have a whole load of eds 3 issues:

    I had fertility problems due to PCOS (EDS3 linked?) and had to take clomiphene to conceive. The labour failed as my muscles just gave up, so I had an emergency c-section. Like the other poster, the anaesthetic failed (definitely EDS3 linked ) so the whole process was super painful. I did not have another child due to the trauma surrounding the first. Because of the prolonged labour, he nearly died and was resuscitated. He then had early development problems as a result, now thankfully all recovered from. I had PND, and other problems.

    Luckily he does not have EDS3, for which I am grateful. It can be a lifetime of pain and misery, even if you are diagnosed. If you really wish to become a mother, then I wouldn't let your single status stop you, but do think long and hard about it - you may be doubly lucky and your health holds up and your child doesn't have EDS3. Equally, you may not be lucky. I honestly don't know if I would have had a child myself if I had known my diagnosis. My health at the time was odd but generally fine. It has gone downhill since then.

    It seems to be the case that females suffer more than males, as there are more female sufferers than male, but both inherit equally, so you could legitimately ask for your eggs to be screened so that you only have a boy. EDS3 has so many wide-ranging effects, I would not be surprised if hormone production is also affected (I am waiting to go on HRT to fix yet another hormone imbalance right now).

    Be careful with what you read online - I too have read medical reports which suggest that EDS pregnancies are normal. I don't think enough research has been done on that, and also I think a lot of research has been skewed by the biases of the researchers. A woman I know with EDS3 has been advised not to have children, so there is no consistency in advice.

  • Thank you everyone for taking the time to reply was told by EDS UK support there will be a preliminary study published at some time in a British journal looking at POTS and pregnancy but as you suggest not much other research done. I am guessing anything cutting edge may come from the IS where they seem to have morr research funding. Lots to think about not least you paint a picture that I may need genetic counseling. It's tough as I don't have it as bad as I could do and was thinking maybe in future I could afford a surrogate and be in a relationship so have the support i will need. My mum had three miscarriages and an ectopic and nearly died during prem delivery with me, guess she may also have aspects of EDS tho never been tested. I don't know about my dad as he died when I was 3. I guess there is a part of me that wants to give things a go however slight the chance as I would like to be a mum to my own child, but j understand I have to do a lot more research and speak to counselling too. Thanks!

  • First of all, I am so, so sorry to all here who have had such terrible experiences and miscarriages, I don't think that's enough, but I truly am sorry.

    I would presume as the blood vessels can be stretchy and so many organs can be involved that miscarriages can be more prevalent, that's an initial thought that entered my head when I first thought I could have this.

    I have to say to the OP, and this is just my own personal opinion, so I am not being mean to anyone who thinks or does differently. But....

    since I became ill, years ago now, with so much pain and fatigue, I thought that whatever I had could be genetic.

    I wouldn't wish how I feel on anyone, I never do, no matter what, not even my greatest enemy (I don't have one, but anyone I particularly dislike), I would never want anyone to have daily pain in their joints. I wouldn't wish crippling fatigue and brain fog on anyone, or passing out on a whim anywhere you are. I had a great lie before as a dancer/dance teacher, it's something I truly love and it's something that was ripped away from me for being too ill. I wouldn't want anyone to experience that either. And for that reason, that I wouldn't want someone I hate to have these things, I do not want someone I would love the most in the world to have to put up with it on a daily basis. So I decided to not have children of my own, in case I was to potentially pass on a life of pain. I wouldn't want to do that knowingly. I think I would find it too hard and blame myself if they had any pain like I experience.

    I know everyone is different, but this is my own opinion on this. I'm sorry if it has upset anyone, as that's not my intention at all.

  • I have HMS (possibly EDS), chronic illeitis, pancreas malfunction, chronic adenomyosis and UCTD. I have had IVF about 6 years ago, I was 35 y/o then.

    Few remarkable things:

    - the egg retrieval punction hurt like hell, the local morfine injection didn't help. The pain/agony lasted for days.

    - with the treatment I got 7 to 10 eggs each time on the ultrasound but when they retrieved them only 1 or 2 could be saved

    - three courses of IVF, only one embryo survived, it was planted in the uterus but after 10 weeks it turned out to be non viable

    - the non viable egg needed to be expelled from the body and my gyno advised me to use cytotec pills vaginally. This gave me delivery-like (never experienced that) contractions ), I was literally screaming, and a massive vaginal bleeding. Had to go to the hospital. They told me I was clean from inside and needed stronger painkillers.

    - most important, all the diseases (not HMS that is no disease) I mentioned above started a half year after I stopped IVF.