Re: new here and question - Liz

[Guest guest]

Thanks for asking, Jill. I saw a connective tissue specialist (a

dermatologist) who says that even though I can do wacky things with

my double jointed fingers, I don't show enough other symptoms to be

diagnosed with Ehlers Danlos. I'm discovering that seeing specialists

means waiting several weeks to months between appointments. I have

yet another test with an ob/gyn scheduled for next week (at last)

before (hopefully) deciding on surgical options.

--Liz

> 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

[Guest guest]

Hang in there Liz, the management of all of this isn't done quickly,

unfortunately - but we are behind you!

Jill

Re: new here and question - Liz

> Thanks for asking, Jill. I saw a connective tissue specialist (a

> dermatologist) who says that even though I can do wacky things with

> my double jointed fingers, I don't show enough other symptoms to be

> diagnosed with Ehlers Danlos. I'm discovering that seeing specialists

> means waiting several weeks to months between appointments. I have

> yet another test with an ob/gyn scheduled for next week (at last)

> before (hopefully) deciding on surgical options.

[Guest guest]

Hang in there Liz, the management of all of this isn't done quickly,

unfortunately - but we are behind you!

Jill

Re: new here and question - Liz

> Thanks for asking, Jill. I saw a connective tissue specialist (a

> dermatologist) who says that even though I can do wacky things with

> my double jointed fingers, I don't show enough other symptoms to be

> diagnosed with Ehlers Danlos. I'm discovering that seeing specialists

> means waiting several weeks to months between appointments. I have

> yet another test with an ob/gyn scheduled for next week (at last)

> before (hopefully) deciding on surgical options.

[Guest guest]

Hang in there Liz, the management of all of this isn't done quickly,

unfortunately - but we are behind you!

Jill

Re: new here and question - Liz

> Thanks for asking, Jill. I saw a connective tissue specialist (a

> dermatologist) who says that even though I can do wacky things with

> my double jointed fingers, I don't show enough other symptoms to be

> diagnosed with Ehlers Danlos. I'm discovering that seeing specialists

> means waiting several weeks to months between appointments. I have

> yet another test with an ob/gyn scheduled for next week (at last)

> before (hopefully) deciding on surgical options.