Re: new here and question - Liz

[Guest guest]

Liz,

I just wanted to check in and see how you were faring!

Jill

new here and question

Hi,

I'm new to this group, mainly here to lurk and hopefully learn

something about EDS. I was recently tested for bleeding disorders,

and the results came back negative. When my hematologist saw I was

double-jointed, she suggested I see a dermatologist to look into EDS.

We're trying to account for a haematoma (~2.5 units of blood lost

internally), plus some hemorrhaging, that I had after the birth of my

child. We're doing this because I will probably need surgery to

remove a large uterine fibroid, and we want to know how much of a

risk blood loss will be.

My dermatology appointment is still some time off, so I won't know

for a while what type of EDS I might have. In the meantime, I'm

wondering if anyone can comment on how EDS might affect surgical

options, and how EDS-related bleeding problems might be handled

during surgery. My understanding is that my choices will be between a

myomectomy (removing just the fibroid, which typically involves a lot

of blood loss) and a hysterectomy (less blood loss, but a radical way

to treat a benign, if obnoxious, tumor). Anyone been through this too?

Thanks,

--Liz