Fertility Network UK
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Fertility treatment/egg freezing and Ehlers Danlos/POTS syndromes- anyone out there with same story?

Hi there

I am new to the forum. Have Ehlers Danlos Syndrome type 3, Postural Orthostatic Tachycardia Syndrome, 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?

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

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

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? 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

I would also love to hear from anyone who has an AMH of less than 7 and an antral follicle count of 7 too....

Many thanks everyone!

2 Replies

Hi jennyfromtheblock. I have known of one lady who like you suffers with "POTS" who, as a single person did go on to have a baby - but used an egg donor privately. The baby was born healthy, but she had a lot of issues with her joints and tachycardia during the final trimester of her pregnancy. She spent her final 3 months on bed rest in hospital, and finally gave birth by C-section at 37/40wks. I hope you manage to get someone who suffers with the same as you to reply, and I do wish you well with whatever you do decide to do. Diane


Thanks Diane for the reply, that is encouraging news in some ways however I am looking still to use my own eggs and possibly a surrogate in the very distant future hence why I wanted to know if anyone with the same condition has done the same in terms of issues with quality of egg produced and/or embryo and if egg freezing had been effective. Thanks


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