National Uterine Fibroids Foundation

Message from the Executive Director

By Carla Dionne, Founder and Executive Director,
National Uterine Fibroids Foundation

The National Uterine Fibroids Foundation is long overdue.

Uterine fibroids have been well documented in the medical literature for over 150 years and yet we still don't know what causes these tumors to grow and become symptomatic. It is our hope that NUFF will be able to bring together the scientific community and push forward the agenda of long-term research into the cause, cure and treatment options for uterine fibroids. While doing so, we know that women need information and support in pursuing treatment for their condition and we intend to be there to provide objective information on all options currently available.

I, personally, intend to be there to provide objective information on all treatment options currently available to the absolute best of my abilities.

In order to make an appropriate treatment decision, it is critical for each woman to weigh the risks and benefits of each treatment option against her own physical condition and belief system. That task simply can't be done appropriately if communication between a patient and her physician is incomplete or inadequate. As a woman who has suffered from uterine fibroids, lack of appropriate information, lack of support from the medical community and side effects from the treatment I chose to combat my uterine fibroids, I know first hand how crucial it is for a woman to be able to believe that she's been given as much information as is available. Choosing a treatment for uterine fibroids is a life-altering decision that can either add to or subtract from a woman's Quality of Life after the procedure. For that reason, developing solid and up-to-date patient information for public distribution is at the top of our mission list.

While I've heard it stated over and over again that "hysterectomy is a definitive treatment," (meaning that the fibroids cannot grow back once the uterus is removed), I'd like to point out that hysterectomy is NOT a "cure" nor is it the only option available to women seeking treatment. It is a surgical procedure with specific surgical and long term health risks. An organ (uterus), which we have not researched thoroughly in terms of its purpose in the body, is removed permanently through hysterectomy for the treatment of a benign condition.

No woman should have her Quality of Life suffer from either the disease of uterine fibroids or the treatment option she must succumb to in order to treat her fibroids. Long term outcome and Quality of Life issues have NOT been studied for any single treatment option currently available for uterine fibroids. Even though we've known about uterine fibroids and used hysterectomy as a primary treatment option for over a century, we haven't bothered to do the research.

A word about our name and the 'NUFF' acronym....

From square one, this organization was developed with the belief that there was a need to reach women on a national level with a strong, clear, consistent voice on the research, diagnostic measures, and treatment options currently available for uterine fibroids and related conditions of the reproductive system.

The amount of confusion and dissatisfaction with the medical "status quo" regarding the uterine fibroid condition and its primary treatment option (hysterectomy) that I found on My Journey has been echoed by hundreds of thousands of women via email and phone calls. If I ever thought I was alone on this journey, I can only say that the two years have taught me there are hundreds of thousands of women travelling alone on this journey as well. We need to unite. We need to become one voice speaking very loudly instead of many voices speaking in inaudible tones. We need a National organization. Now, we have one.

As for that acronym....it was deliberately chosen by its letters and then the name filled in to "make it work." Why? Because I've had 'nuff.

'nuff hysterectomies

'nuff misinformation

'nuff "mis"treatment

'nuff bleeding incessantly

'nuff changing doctors trying to find one that will listen and be supportive

'nuff hiding at home with excessive abnormal bleeding

'nuff of "no research" that would give us a cure once fibroids have developed

'nuff of "no answers" that would help us prevent fibroids from ever developing in the first place.

Have you had 'nuff too? Join our community and help us fulfill our mission statement!