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Myotonic Dystrophy and pregnancy

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Boo2you Sun 11-Nov-18 01:34:12

Just feeling kind of alone I have a healthy DD but I have MD (was told any baby I had which was affected would be born with it) and would really like a sibling for my DD- we got pregnant last October we weren't actually trying but had planned to start TTC in November- we found out at 12 weeks from CVS that our little boy was affected and that it would be in his best interests as well as our own to have a TFMR (I have seen the devastating effects in children born with this condition). So that was the week before Xmas fast forward 3 months to March and I start haemorrhaging after two weeks went to the hospital was told to go home as I was not a priority it was just a period! It was bright red blood and just had 1 huge bleed a day and nothing in between! Two more weeks of this I started passing out went to A&E waited 9 hours before I saw anybody there was not even a triage nurse! It was the same junior Dr who sent me home - told me again there was nothing wrong but got my blood results and realised I had half the amount of Oxygen in my blood than I should have, He conceded that I must have been bleeding a lot and had to have 3 emergency blood transfusions and then an op to temporarily block the artery to my uterus. Now I have had two lighter but fairly normal periods following a few heavier ones in a 35 day cycle but am unsure if I am ovulating I also have PCOS- we've not managed to get pregnant yet - just wandering if anyone has any experience of MD and pregnancy or AVM (the condition which caused the excessive bleeding unrelated to MD)?

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