embo slothing/response from members

[Guest guest]

>You probably don't remember or know who I am, I wrote this group on numerous

>occasions, trying to get info. on an IR's name that performed an UAE on a

>patient in the Illinois area that almost died & have been TOTALLY ignored,

Actually, I reported on that case. In detail. To this list group and also on

my website. But I am not going to broadcast any doctor's name blatantly to a

list group for them to eat alive over something that may or may not have a great

deal of additional details involved that we are not privy to. Even so, it did

seem critical that the women and researchers on this group be aware of the

circumstances of the case so they could learn from it. Also, in matters of

medicine where specific patients are involved, confidentiality is a LEGAL issue

that, quite frankly, I don't want to be sued over.

While this list group IS a support group, it is also a research group on ALL

options for uterine fibroids. Unlike the embo group, the majority of members

have NOT had UAE and may not, therefore, be able to respond to the issue of

fibroid slothing. Yes, we do have a lot of members who have undergone UAE. But

we also have members who have undergone myomectomy, hysterectomy, and

endometrial ablation. We have many, many women on this list who simply have not

undergone ANY procedure yet -- they are trying to learn about their options from

all angles so they can make an informed decision. We also have members who are

reporters, physicians, researchers, nurses, etc.

When someone does not receive a response to a specific question such as Loren's,

which was directed at individuals who have experienced fibroid slothing, it may

not be because members are ignoring that person. It's more likely that there

are no members who have experienced the side effect described in quite that way.

No one sits at home and goes " yeah, I had fibroid slothing like that -- but I'm

not going to answer her -- I'm going to watch her suffer online. " At least, I

don't believe in my heart that women are doing that.

I'm happy to read that you have your UAE scheduled and do wish you the best of

luck. UAE has certainly restored my health in many ways. If you ever have any

questions that you believe are being deliberately ignored or going unanswered on

this list group, please don't hesitate to email me personally. If we,

collectively as a group, don't know the answer or don't provide an answer, I can

certainly set things in motion with outside parties to come up with an answer if

at all possible.

Best wishes to you,

Carla Dionne

Executive Director

National Uterine Fibroids Foundation

mailto:carla@...

http://www.NUFF.org

/list/uterinefibroids

Personal email & website:

mailto:cdionne@...

http://www.uterinefibroids.com

" Never doubt that a small group of thoughtful committed citizens can change the

world. Indeed it's the only thing that ever has. " Margaret Mead