Carla Dionne

 "Hi, I'm Dr. Paul  Indman.  I'm at the 30th Annual meeting at the AAGL, and I have with me  Carla Dionne who is Executive Director of the National Uterine Fibroid  Foundation - NUFF.  I think you're in a very interesting place because  you've been treated for fibroids and you've had several types of  surgery.  You started out as a lay person with very little knowledge or  no knowledge of fibroids and now I think in talking with you you're far  more knowledgeable than most of the physicians I've talked to.  I've  very impressed because I think you have good medical knowledge and not  just a matter of reading so what made you decide on having alternative  treatment?"
 
 

 "For me it really  wasn't a choice in that it was a hysterectomy or some alternative  treatment.  I think this actually happens to a lot of women trying to  avoid a hysterectomy for whatever personal reasons.  My own personal  reasons accumulated over a period of time of gynecological consults  where I would ask specific questions about myomectomy and not get  intelligent answers from the gynecologists I was consulting with which  didn't exactly lay the foundation for trust in terms of any surgical  procedure with that specific gynecologist."
 
 

 "What would they tell you about myomectomy?"
 
 

 "That it was too  dangerous, too risky, too much blood loss, and they couldn't do it  without converting to a hysterectomy.  To me with the knowledge that I  have today, I really believe that all of that was nonsense.  I had  primarily a singularly large subserosal fibroid and in terms of  myomectomy at any point in time it could have been a fairly simple  myomectomy.  Over time I accumulated enough information so that when I  asked the questions and I received certain answers I knew instantly that  the gynecologist (A) never did myomectomies or (B) just didn't just  want to do myomectomies, or any number of additional reasons they might  have but it didn't lay the foundation for trust.  Eventually, when I did  choose embolization it's interesting because the interventional  radiologist who evaluated my case took one look at the ultrasound and  said - you need a myomectomy.  Why would you want an embolization for  this singularly large fibroid?  We could get rid of the bulk mass with a  myomectomy, and I said - I've been to X-number, at that time fourteen  gynecologists, and none of them would."
 
 

 "I know that now which  is part of why we founded as an organization - to help women sort out  who the experts were for whatever treatment that they themselves would  be interested in choosing and getting them to the right people on the  first or second hit and not fourteen gynecologists later.  So it's  important to be able to understand what drives women down a certain  path; I think it's important that gynecologists have a better  understanding as to why women don't want a hysterectomy.  I don't see a  lot being presented at this particular conference nor have I seen it at  any gynecology conference that really evaluates and looks at why a woman  might choose some other option.  Why are women choosing embolization in  the thousands?  I think part of the reason, which I've come to  understand in the last three years of communication online with women,  is it has to do with control and feeling as though you're in control of  your condition to some extent.  With any surgery that is currently being  offered by gynecologists you're put to sleep and you have no control,  and if you've received the same number of recommendations for  hysterectomy and the same type of communication that I did over the last  fourteen years there's a lot of concern over how much you can trust  that physician."
 
 

 "Help me understand  this, now I'm a gynecologist, and I do lots of myomectomies.  I've  never done a hysterectomy on a woman who wanted a myomectomy but I tell  women that's a known risk just as a plane crash is a known risk of  getting on a airplane."
 
 

 "We can do it under  regional anesthesia, numb from the waist down, so the woman's awake.   Obviously, she can't be in there with her hands helping with the  surgery."
 
 

 "How is a  myomectomy in that situation any less of control or discussing what  situation we would do a hysterectomy knowing that the risk is very low  of needing a hysterectomy during a myomectomy?  How is that any less of  control than, let's say, doing an embolization under sedation?"
 
 

 "There's a couple of  things at play, one of them is there are women who want to be awake even  if they're not going to be able to see a darn thing during the  procedure.  There are women that want to be awake during that  procedure."
 
 

 "I do them; we do myomectomies awake under an epidural."
 
 

 "But it's not a problem, if someone wants to be awake we do it that way."
 
 

 "But really it begins  back in the consult - how much of the procedure you're going to  communicate to them and how much you open up the dialogue for asking  questions and not just waiting to see what their questions are but  actually inciting questions specifically.  Do you want to know what I'm  doing here, do you want to know what I'm going to do here, or do you  want to know what kind of stitches I'm doing?  Women write to us feeling  very violated after they wake up and find out they have a certain kind  of incision or they used staples instead of sutures and none of that was  communicated prior to the procedure.  That's really sad because now we  have a patient who may have had a wonderful outcome from a procedure but  is very distrusting of her physician because he never told her he was  going to do that.  So there's a lot of detail in preparing for the  surgery that's very important in terms of communicating with a patient.   But in terms of being awake, that is a very important issue because the  number one thing that I hear over and over about the embolization  procedure for those under conscious sedation who remember it all, they  are ecstatic because from what I can tell it has to do with having some  sense of control that this isn't going to convert to a hysterectomy  right before their very eyes, and there is a sense of wonderment as well  as control over that.  I don't know if that could be mirrored with a  myomectomy or even a hysterectomy for those who would choose  hysterectomy but I certainly know we've answered questions from women  who want to know why they can't be awake or want to know why their  surgeon isn't talking to them specifically in detail."
 
 

 "So what can women  do to find a physician who is going to meet those needs?  I get e-mails  from around the country - do you know someone in Timbuktu?  I can only  refer to surgeons who I've seen operate so those who I've seen take out  myomas, I'm happy to refer to them.  I haven't seen many people do it so  how would you tell a woman to go about finding somebody?"
 
 

 "We're in a tricky  position there too because we certainly get phone calls from all over  the U.S. and even outside the U.S. from women calling for referrals  because they want to come to the U.S. for treatment.  It is a very  difficult position to be put in so instead we've taken the approach that  we'll help you try to decipher the information, we'll help you figure  out using physician databases online and resources like the reproductive  medicine physician finder, and the board certification verification  online.  The fact is every state medical board has access to a license  for verification."
 
 

 "Those are sort of minimal, that means you haven't lost your license."
 
 

 "Right, those are very  minimal but then cross-referencing which professional organizations  they belong to so you can get a feel of what their peer review  participation is both in terms of obtaining additional education along  the way.  For instance, one of the road maps that I have on the list is  if you're looking at laparoscopy have you checked the AAGL website to  determine whether or not your physician is a member because at a minimum  that's a good starting point.  Then do they have any sort of  accreditation now and that will only get you a small pool of names, from  there you have to be able to open up communication yourself and be  willing to ask key questions."
 
 

 "One thing that  amazes me in this day and age of airplanes and travel, obviously it's  inconvenient to travel but if this is something that is important to a  woman as wanting to be in control of her uterus and wanting to have the  surgery done in a manner that she's comfortable with, it doesn't cost  much to get on an airplane and go anywhere in this country.  Certainly  if I were having major surgery on something that was important to me I'd  go anywhere if I thought I'd have a better experience because I've got  to live with that for the rest of my life."
 
 

 "I would agree with  that, and I think a lot of women do agree with that but there is also  something much deeper especially where fibroids are concerned and that  is the acculturation of the hysterectomy.  It's very well imbedded among  many generations of family members who've had hysterectomies to just  stay where you're at and have the hysterectomy.  Even when women don't  want a hysterectomy and they want to avoid that treatment or they even  want to avoid surgery period, they don't want a myomectomy either, the  acculturation of hysterectomy is so intense that it's really frowned  upon.  If you have to leave the area, it can't be that good.  If you  have to get treatment somewhere else, it can't be that great because the  majority isn't doing that.  In reality, a great many women do exactly  that, they get on planes and they go wherever and we can certainly help  there as well because we have some affiliation with organizations that  allow for low rental of rooms to stay in the area for an extra week or  so after a procedure.  Definitely in very extreme cases we have some  affiliation to get you there via air fare if that's what you want but,  again, our organization is about individual choice so we try to help  them be able to determine what that choice is and find a practitioner in  their area first."
 
 

 "That's logical, if  you can find someone in that area.  Ultimately, I think women need to  find someone they're comfortable with and not accept if someone's giving  you something that doesn't sound right, check it out."
 
 

 "Thank you very much.  I'm Paul Indman here with Carla Dionne from the AAGL meeting in San Francisco."

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

Articles

OBGYN.net Conference CoverageFrom American Association of Gynecological LaparoscopistsSan Francisco, California - November 2001

Alternatives to hysterectomy for the treatment of uterine fibroids

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Alternatives to hysterectomy for the treatment of uterine fibroids video

  "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?"
 
 

 "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?"
 
 

 "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."
 
 

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

 "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."
 
 

 "Now you're not just seeing this as a local Los Angeles organization are you?"
 
 

 "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."
 
 

 "How did you get interested in fibroids?"
 
 

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

 "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."
 
 

 "What did you choose for your own fibroids?"
 
 

 "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."
 
 

 "No one ever offered me a myomectomy."
 
 

 "That's been done since the turn of the century."
 
 

 "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."
 
 

 "How did it go with your embolization?"
 
 

 "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."
 
 

 "Then you had surgery subsequent to that?"
 
 

 "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."
 
 

 "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."
 
 

 "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?"
 
 

 "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."
 
 

 "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?"
 
 

 "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."
 
 

 "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."
 
 

 "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 

.   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."
 
 

 "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 

  - 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."
 
 

National Uterine Fibroid Foundation

Carla Dionne

Articles

Alternatives to hysterectomy for the treatment of uterine fibroids

Alternatives to hysterectomy for the treatment of uterine fibroids video

National Uterine Fibroid Foundation

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