National Uterine Fibroid Foundation

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Paul Indman, MD: "I'm Paul Indman, we're at the 30th AAGL International Congress of Endoscopy, and I'm fortunate to have with me Carla Dionne. Carla is Executive Director of the National Uterine Fibroid Foundation (NUFF) - is that correct?"

Carla Dionne: "Yes."

Paul Indman, MD: "And I was fascinated in talking with Carla who's not a physician about her knowledge of new developments in fibroids. First of all, Carla, can you tell us something about the NUFF?"

Carla Dionne: "Yes, the National Uterine Fibroid Foundation was actually founded about a year and a half ago. We receive 501-C3 status so we are a fully functional non-profit organization and our primary purpose is as a patient advocacy organization. So generally we communicate with women either via the Internet or telephone services and try to get them information that they need about uterine fibroids and all the current treatment options available. We have other mission statements beyond patient advocacy and one of those is communicating with physicians, researchers, and clinicians about fibroids, about what potential treatment options there are, and what research might be in progress or we might be able to help facilitate down the road. Eventually, we would like to be able to even initiate some research that would help us delineate what causes fibroids because right now we don't really know."

Paul Indman, MD: "Now, Carla, is this all a lay organization or are there physicians involved? How is this working?"

Carla Dionne: "Actually, it started out about three and a half years ago on the Internet as an informal group, it was primarily patient advocates - women who came together on the Internet to talk about their own fibroid condition and eventually physicians started joining the discussion as well. Clinicians and researchers from different divisions of the National Institutes of Health have come on board, and clinical researchers from Brigham, Duke, UCLA, Boston, and a lot of university physicians have jumped into the organization and given us some guidance on what we should do and helped women all along the way find appropriate treatment options. So at some point in time it really became clear that we needed a formal organization to incorporate and to work with both women and researchers who are consistently in our message across the U.S. From there, myself and a number of UCLA physicians, specifically, Michael Broder a gynecologist at UCLA and Scott Goodwin an interventional radiologist at UCLA founded the organization and moved from there to add additional physicians as well as patients to our Board of Directors."

Paul Indman, MD: "Now you're not just seeing this as a local Los Angeles organization are you?"

Carla Dionne: "No, in fact, we've been national from the beginning and to some extent international but more in the sense of helping organizations get formed in other nations. For instance, offshoots of the National Uterine Fibroid Foundation include the fibroid organization in the UK as well as one in Japan and another that possibly could be formed in Australia in the coming year. But our mission statement focus is on the United States but we're certainly here helping all the other nations that come together with women when they seek us out on the Internet and definitely give them guidance on how they can go about and form their own group, so we're all communicating internationally about fibroids online."

Paul Indman, MD: "How did you get interested in fibroids?"

Carla Dionne: "My own fibroids, of course. I've had fibroids for about sixteen years."

Paul Indman, MD: "When you were a baby."

Carla Dionne: "Thank you but no, actually, I was diagnosed with fibroids at the age of twenty-eight and by that time they had already grown to about the size a of baseball. I was not through with childbearing and so I opted to seek as many alternatives as I could to avoid a hysterectomy, which was the only option ever presented to me even though I still wanted children. So it was just a lot of years learning about fibroids and managing my own fibroids until they finally became so symptomatic that the Internet eventually led me to some new therapies."

Paul Indman, MD: "What did you choose for your own fibroids?"

Carla Dionne: "Actually, it wasn't so much what I chose, it was more along the lines of one day my mother sent me a piece of paper in the mail with the word embolization written on it and said go look this up. She had seen a story on the nightly news the night before, and so I did look it up and eventually did choose embolization. But I would like to say that the primary reason why I chose embolization over a hysterectomy or a myomectomy or even myolysis, as I know a lot of gynecologists want to know why would I choose embolization, it really was because those other options were never presented to me. I had fourteen gynecological consults and everyone of them said hysterectomy."

Paul Indman, MD: "No one offered you a myomectomy?"

Carla Dionne: "No one ever offered me a myomectomy."

Paul Indman, MD: "That's been done since the turn of the century."

Carla Dionne: "I know."

Paul Indman, MD: "Even though there are some people who have websites who claim to invented it recently you can look in these ancient textbooks and see that it's been done."

Carla Dionne: "About a good 150 plus years."

Paul Indman, MD: "Right."

Carla Dionne: "At least in the U.S."

Paul Indman, MD: "How did it go with your embolization?"

Carla Dionne: "I was actually one of the first 200 patients in the nation to undergo embolization. It was extremely painful for about twenty-four hours and then it was a matter of diminishing results as the fibroids diminished over time. About six months is pretty much how long it took to completely get it's full shrinkage that it was going to get, and then symptoms pretty much went away."

Paul Indman, MD: "Then you had surgery subsequent to that?"

Carla Dionne: "I did, I underwent a myomectomy with uterine suspension earlier this year because as the fibroids shrunk one of the things no one predicted was that my uterus would potentially prolapse. The reason for that, of course, is a very difficult childbirth that more than likely damaged the ligaments along the way and numerous physicians speculated the only reason my uterus remained where it was initially was the size of the fibroid in it."

Paul Indman, MD: "Actually, I've seen that after a myomectomy in someone where the uterus prolapsed after we took out the fibroid. I was kidding her we need to get her a prosthetic fibroid to put back to hold the uterus."

Carla Dionne: "To hold it back up, yes."

Paul Indman, MD: "So now that you've had an embolization and still had to have surgery about that, do you feel that the embolization was a bad thing since you needed surgery?"

Carla Dionne: "I don't, and I'd choose it again. I would have been happy had the prolapse never occurred requiring treatment and even though there was some bulk tissue, clearly, there was still a relatively large fibroid left - about 7 cm or so. But it was not noticeable, and I was asymptomatic. I didn't see any reason to do any additional surgery, the embolization pretty much took care of all the symptoms."

Paul Indman, MD: "That obviously gives you a lot of first hand experience. I think, people who are looking also want to know what scientific background you have because it's nice that, okay, this is what happened to me. I think it's good because you can really relate to them - I had this. Tell me about your scientific background and what you've learned or how you're approaching it?"

Carla Dionne: "It's interesting because science was never my first subject in school so it's interesting coming to this. But I do have twenty years of technical writing background in the software and semiconductor industry so it's not as though I don't know how to understand and read technical literature or even write it or dissect it into laymen's terms for others because that's pretty much what I've been doing for the last twenty years only in relationship to software and the semiconductor industry. So approaching medicine and the literature that's been published for medicine around fibroids is really not a whole lot different than approaching how you would dissect a computer, how it functions, and then trying to explain that in very lay terms to the next person. When my fibroids became extremely symptomatic I continued reading the medical literature as much as possible and gained new access to some of the libraries at UCLA and other hospitals which all typically have a medical library. Now there as well as the Internet resources gave me instant access to a lot of medical literature and so I would typically pick an element over the last three or four years, in particular, fibroids or the reproductive system and then just MEDLINE search it to death until I had all the papers I could find. I'd lay them all out, read them, and try to dissect them that way - the same way I would any computer system that I was trying to analyze and regurgitate to the layperson. Over a period of time and after reading a thousand or more papers you do get a fairly comprehensive picture of what's going on and it offers a much more objective perspective when you've spent that much time reading as much literature as possible."

Paul Indman, MD: "I've been impressed just in talking with you at this meeting on what a good command of the literature you have, and for me in my practice which is taking care of women many of which have fibroids, I see you as a good research person in terms of having researched literature that I may not have seen. I think for physicians that actually is a very nice source of information. Tell me just briefly about the book you have, it's an interesting title."

Carla Dionne: "Yes, I published a book earlier this year called, 'Sex, Lies, and the Truth about Uterine Fibroids.' It actually started from a personal website that I created about three years ago called, 'Sex, Lies, and Uterine Fibroids' at http://www.uterinefibroids.com. Over a period of time it grew from what initially was five pages to well over a hundred and twenty pages and it continues to grow monthly as a website. Somewhere along the line somebody suggested a book so I started taking all of the information that I was gathering from my research and trying to put up online and basically went and talked to a couple of publishers and instantly was able to get into a contract to write a book. So a lot of that information that's in the book was initially put up on the uterinefibroids.com website. It is a personal journey and I'm hoping that women see it as a journey that shows that even in most extreme cases, because my fibroids certainly were and well in excess of a twenty week pregnant uterus, it was extensive and even in the extreme cases of someone to the edge as I was, as you can read if you go to the website or purchase the book, there is an opportunity to get well and to renew your life and move on. Fibroids don't have to dominate your entire life, there are opportunities for healing."

Paul Indman, MD: "I think that's an important point because so many women really let the fibroids take over. A woman is not a uterus with the rest of the body and it's so easy to lose sight of that. Now I'm sure we'll put up the URL, which is http://www.NUFF.org - I know it by heart already. I must say as a physician I'm very impressed, I look forward to the National Uterine Fibroid Foundation, and we wish to thank you very much."

Carla Dionne: "Thank you."

For more information on Fibroids and Myomectomy please see Dr. Indman's web site Myomectomy.net