Re: Statement from Carla re Natl Uter Fib Foundation

[Guest guest]

Wow to you Carla Dionne, and the National Uterine Fibroid

Foundation! Thanks for so beautifully restating what this group is

all about.

I wish more researchers were working on understanding fibroid

response to estrogen and progesterone levels. It seems like very few

people are studying fibroids - I guess it's not a " hot " research area

like cancer is. Does the Natl Uterine Fib Foundation do fund-

raising for research or provide grants to researchers?

(Please forgive the top posting -- I wanted to leave your whole

message intact.)

Jean.

> > I'm trying to determine if you would prefer those, like myself,

who

> are attempting to heal our fibroids naturally - trying really hard

to

> avoid surgery, should remain with the other group " Healing from

> Fibroids Naturally. " I was under the impression that since it's

> called " Uterine Fibroids, " there would be more broad acceptance of

> many different methods, including herbs, vitamins, supplements,

> exercise, other natural methods, IN ADDITION to myos. Seems the

> overall emphasis here is for myos. Perhaps the groups should be

> called " Myomectomies for Uterine Fibroids? "

> > ------------------

>

>

> Wow.

>

> So, I'm either " with you or against you " -- is that it?

>

> Double wow.

>

> Upon reading this, my gut instinct was to initially, and quite

> completely, ignore this post.

>

> I think, after 5 years of hosting/moderating this group and seeing

the

> cycles of members come and go who have chosen a wide range of

> treatment options, that this criticism from you, Edith, is entirely

> unfair. So, in the end, I simply must respond.

>

> You asked what it is that I would prefer and here it is, in a

nutshell:

>

> 1. That women coming to this group would do so with an open mind,

> open heart, and willingness to learn, learn, learn.

>

> 2. That members would read the introductory email they receive and

> truly understand that this group wants to know the science -- how

> little or great it may be -- that supports/detracts from any given

> proposed treatment.

>

> 3. Let me repeat #2. SCIENCE. If it doesn't exist, it doesn't

mean

> we're close-minded -- it means we still want to understand the

> underlying theories and potential physiological mechanisms which

> may/may not help us with our fibroids. This does mean, however,

that

> " broad acceptance " for any potential treatment may not be

forthcoming

> in a BLIND manner of acceptance.

>

> 4. To understand the SCIENCE, we must be willing to ask QUESTIONS.

> Blind faith and anecdotal referrals for treatment are not enough.

> This does not mean those who self-treat based on blind faith and/or

> anecdotal referrals aren't welcome to post here -- quite the

contrary.

> Nonetheless, as the Executive Director of the National Uterine

> Fibroids Foundation, I would not recommend any woman take on the

role

> of medically unmonitored and completely self-treated lab rat. This

> doesn't mean I haven't " been there, done that " too, though. After

> all, I was diagnosed at 28 and didn't obtain embolization until age

> 42. Between 28 and 42, an awful lot of years of " been there, done

> that " kept me barely afloat and alive.

>

> However, while we can't and won't recommend women become their own

> experiment (remember, this support group is hosted & moderated by

the

> National Uterine Fibroids Foundation -- an organization with a deep

> and abiding sense of responsibility towards appropriately studied

> treatment options and advocacy for the appropriate care and

treatment

> of women with fibroids) -- we are still very much interested in what

> it is women choose to do, in terms of self-treatment, and the

outcome.

> Short AND long term outcome, that is. Most, if not all, of us have

> fit this category of self-treatment at some point in time in our

> medical history and sharing that information here may well help

others

> to learn and understand our choices and outcomes.

>

> 5. Support. Support. Support. For women with fibroids AND a wide

> range of associated diseases, conditions, and issues. Support

should

> come as women are seeking information, making a treatment choice,

> undergoing/dealing with a treatment, recovering, etc.

>

> 6. Asking questions, digging into the research, asking more

> questions, examining angles of treatment, discussing controversial

> topics of care -- should be ENCOURAGED. But, far too often someone

> takes offense and feels they must take on some defensive posturing.

> Sigh. It's understandable, in terms of human behavior. I just wish

> it occurred with less frequency and vehemency. I read/study a LOT

of

> research and communicate daily with a great many researchers from

> around the world -- it's one of my primary activities. It is my

> nature to ask questions and ask that others ask questions too.

> Thinking and asking questions, along with examining the nitty gritty

> details, should not cause a riot on this support group. From my

> perspective, it should simply be part of the learning process as the

> science of reproductive disease/treatments continues to evolve. If

we

> don't encourage the questions, will we ever evolve to the model of

> prevention vs. our current model of triage? Somehow, I just don't

> think so.

>

> 7. That women coming to this group would do so with an open mind,

open

> heart, and willingness to learn, learn, learn.

>

> Yes, #1 and #7 are the same. An item worth repeating front and back

> for this group.

>

> As for whether or not this group should be retitled " Myomectomies

for

> Uterine Fibroids " -- well, this is a suggestion that simply doesn't

> bear itself out fully in review of over 5 years worth of archived

> email. Sure, the group ebbs and flows through a constantly changing

> tide of women coming and going from this group and myomectomy

surfaces

> frequently -- even daily. But it is by no means the ONLY treatment

> supported or discussed on this group nor has it EVER been the ONLY

> treatment supported or discussed on this group.

>

> Reality check: this group was started completely by women who had

> undergone uterine fibroid embolization. In fact, the primary senior

> members of this group have pretty much ALL undergone fibroid

> embolization. Some of us have also undergone: ablation,

myomectomy,

> hysteroscopic resection, uterine suspension, and even

hysterectomy.

>

> So, to rename this group to anything other than what it is -- a

> uterine fibroids support group hosted and moderated by the National

> Uterine Fibroids Foundation -- is simply ludicrous to proffer and

not

> something that will ever happen.

>

> Carla Dionne

> Executive Director

> National Uterine Fibroids Foundation

>

> 19 year veteran of the uterine fibroid war {against inappropriately

> recommended treatment}