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Posted

I don't have a bleeding disorder per say but I've had a couple of strange things happen and I wonder if its related to dysautonomia.

20 years ago I almost died during childbirth. After 2 days of bad labor pains it was determined that I needed a c-section. They had to put me under because I wouldn't numb up on the upper half of my body after the epidural for some reason. When I awoke I found out that I after 2 1/2 blood transfusions and numerous medications, they had to do a hysterectomy because I wouldn't stop bleeding.

It took me well over a decade to get over it. I always wanted more than one child and I felt like my womanhood was taken away from me. I'm over it and grateful for it now. I think my life is better the way it is now. Its strange to me that I keep chewing on this now that I've been diagnosed. If I'm really over it, why does it sit here bothering at me? It doesn't upset me or anything but I just keep wondering if I almost died because my blood was sitting there and not moving on like its suppose to. It doesn't matter to so much if that is what happened, I'm more curious.

One other time I was having laproscopic surgery and when the doc pulled the scope out of my abdomen they nicked a vein that wasn't suppose to be located where it was and it started bleeding. Again they had issues with stopping the bleeding and in order to repair it they had to cut me open further to sew it up. That caused more adhesions, which I have a very bad problem with.

Has anyone else heard of anything similar to this? Do I sound crazy for linking these two together?

Posted

thats the same thing I was going to ask. are you vey flexible and double jointed, see your veins thru your chest? very velvety elastic skin?I have vascular eds.

Posted

I'm sorry because I don't have any answers but thought I'd mention that my weird blood issues seem to be the opposite! Twice in my life I had pre-op blood tests and they cancelled the surgery b/c they said my red blood cell count was incredibly low. Shortly after that, I was told that wasn't actually true - it was that my red blood cells "clump" much more than other people's (like it is hypercoagulating), and therefore it appeared that there were fewer red blood cells than there should be.

I never got an answer as to why that was happening. The second time this happened was right before my hysterectomy, and the surgery was cancelled. When they rescheduled it and did the pre-op blood tests - same thing happened. They finally just put a note on my chart describing this.

There is something I've heard of called "Hughes Syndrome" that seems to describe this problem, but I haven't found much info about it. I have yet to find a doctor that thinks it's linked in any way to my health problems. I do take aspirin on a regular basis - it's one of the few medications that doesn't seem to affect me adversely at all - b/c I worry about blood clots.

Again, sorry that doesn't provide you with any answers!!

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