Guest guest Posted November 22, 2001 Report Share Posted November 22, 2001 Carla, Its a very long,and very,very sad communication that you give us.I have photos of this procedure and it is all you say. What are we to do? Really,what? Best for a good Thanksgiving and a small break from this for you and other members, Bonnie Carla Dionne wrote: > Greetings to all, > > Having just come home from the annual American Association of > Gynecologic Laparoscopists (AAGL - http://www.aagl.com) conference held > in San Francisco this year, I wanted to make a few comments about the > One Kilo Club -- as previously mentioned on the Sans Uteri list after > several women attended the HERS conference this year -- but also > discussed rather hot and heavily offline among many women of both the > Sans Uteri and uterinefibroids list groups. I've been cc:d on many > communications regarding this club from a wide range of women and > medical professionals and feel that it might be more appropriate to just > get this discussion out in the open so that medical professionals who > lurk on these list groups can also be aware of some of the issues and > emotions involved. I'd prefer to separate out my communication > regarding the AAGL conference as much as possible from this email and > report on the AAGL itself in a separate email some time next week. > > First of all, I want to say that I share both shock and disgust over the > formation of this group of physicians into a formalized " educational " > group promoting the learned techniques of what can only be considered > " extreme " laparoscopic surgery focused primarily on the hysterectomy and > even more specifically on huge fibroid uteri. To become a member, one > must prove they've laparoscopically removed a one kilo fibroid uterus > without resorting to laparotomy. One kilo = ~2.2 pounds. > > During this past weekend, I watched well over 30 videos showing many > surgeons performing hysterectomy. The most extreme surgeries viewed > were performed by Marco Pelosi II, the founder of the One Kilo Club, and > the morcellation of a 2600 g fibroid uterus (~5.7 pounds) was > enthusiastically applauded in one session that I attended. This mass, > as well as the surgical technique used to remove it, would certainly NOT > fit the description of uteri handling found in the poem on the home page > on the One Kilo Club's website: > > http://www.onekiloclub.org > > " Oh, Lion, clamp gently. > Pull the womb respectfully out. " > > Not even close. Nor was the reaction of the crowd I witnessed nearing > anything that might remotely resemble " respect. " It made me ill. But, > Marco Pelosi II beamed with pride from the podium at the audience's wild > applause. Honestly, I was ashamed of even being in the audience to > witness this man's behavior and his peer's reactions. Nauseating. At > best. (For those of you who haven't seen a laparoscopic hysterectomy, > morcellation of a fibroid uterus is much closer in description to how > sausage is ground up than it is to " pull the womb respectfully out " .) > > As a sidenote, to morcellate out this much fibroid uterus would mean > that the patient may have been in surgery beyond 4 hours. Much > lengthier timeframe than traditional surgical methods would have taken > to remove this mass and an issue that, I believe, should be of > considerable concern in regard to the safety of the patient. > Lyons reported in another session that the typical fibroid uterus half > this size in mass took him, if I remember correctly, 3 hours to remove > supracervically. > > There are many, many women in this country supporting the work of these > doctors. Giving testimonials of their care and treatment. Providing > " proof " that what these doctors are doing is for the betterment of ALL > women with huge fibroid uteri. Indeed, only two weeks prior to this > conference I was sitting in an airport talking to an African American > nurse who's mother, as it turned out, had sought out the care of one of > the members of the One Kilo Club. She underwent a laparoscopic > hysterectomy and was thrilled with the results. But, when I probed more > deeply about medical care and physical health outcomes, it surprised me > to learn what her mother considered " positive results " over which she > was so " thrilled. " Her primary objective in undergoing laparoscopic > hysterectomy? To save money. To return to work quickly and to > eliminate the monthly cost of tampons, pads, diapers, pain medication, > etc. On the gurney going into the operating room, her mother said to > her " I'm already counting the savings and spending the money... " . At > that point, her daughter calculated that her mother spent $150-200 a > month on " female products " and pain relievers. > > In discussing the long-term potential health outcomes of her mother's > surgery with this woman's daughter, it was chilling to both of us to > consider just how much the medical community has not chosen to research > this disease but rather capitalize off of our suffering through either > " watch and wait " management pharmaceuticals or extreme surgery > accompanied by, more than likely, many more years of pharmaceutical > prescriptive remedies utilized in an attempt at replacing the hormones > lost via surgery. In discussing some of this with her mother prior to > surgery, she was told " ...at least hormone replacement therapy is > covered by insurance " and all other concerns she expressed (as a nurse) > were completely dismissed by her mother as being irrelevant in > relationship to the financial need to eliminate the monthly cost of > supporting her disease symptoms. > > The issues are complex and run much, much deeper than simply the list of > doctors who are members of this club. And, if you think the ideology of > this club stops at its membership doors, you would be incorrect in that > assumption. There is another club: The Extreme Laparoscopy Society -- > I couldn't locate any website for them, however. I believe it to be a > Canadian formed group led by Dr. Larry Demco. And, take a look at this > website: > > http://www.womenssurgerygroup.com/ > > A very inviting website providing information on a variety of women's > healthcare issues. At least four members of this physician's group are > members of the One Kilo Club. Including Dr. Barbara Levy. Dr. Levy is > a past president of the AAGL and a highly respected gynecologist in > laparoscopy. She was actively promoting the vaginal hysterectomy at > this conference and at one point indicated she had done over 500 to date > with relatively low morbidity and high patient satisfaction. She uses > her own patient population " data " to convince patients of the > superiority of the vaginal hysterectomy. Quite convincingly too, or so > it would seem. " In her hands " -- a statement she frequently used -- you > could anticipate an excellent surgical outcome from vaginal hysterectomy > and apparently little to no sexual dysfunction based on her own > collected outcomes data. She is a seasoned female gynecologist with an > extremely convincing presentation. > > Interesting to note, however, that when I asked doctors who made these > kinds of statements about sexual function post-hysterectomy, that none > of them had consulted with sexual function experts, some didn't know of > the recent findings of the clitoral extension of erectile tissue into > the anterior vaginal wall (1998), none could identify even so much as > one validated sexual function questionnaire, and all completely > dismissed the need for a validated fibroid related Quality of Life > questionnaire. In fact, patient validation of ANY questionnaire was > pooh-poohed completely by Dr. Lyons from Atlanta, GA. Since Lyons' > group presented " long-term " data on sexual function after supracervical > hysterectomy in over 300 patients since 1996, I approached him after the > presentation to learn more about the questions he used to determine the > outcome presented (which, BTW, showed, if I remember correctly, 25% of > the patients reporting reduced orgasmic intensity). Did he use a > validated sexual function instrument and, if so, which one? Nope. > Nada. Didn't even show visual recognition of ANY of the sexual function > instruments I rattled off to him. In the end, he indicated to me that > he MADE UP his questions based on what and how HE wanted to know/ask and > completely dismissed the need for any input from sexual function experts > or the use of a validated questionnaire instrument. It would seem to me > that the concept of " researcher bias " was completely lost on this > clinician. Completely. Much as it was on Dr. Barbara Levy. > > Since both Dr. Lyons and Dr. Levy are members of the One Kilo Club, both > are highly respected and considered to be excellent gynecological > surgeons, and both also happen to be researchers who have published > their data in the past, learning of their research methodology and > perspective on the use of validated instruments was quite unnerving to > me. It also seems to me a bit egotistical and extremely self-serving > and pious when you calculate in the factor of how vehemently they've > gone after interventional radiologists for the use of embolization as a > fibroid treatment method. > > So, extreme laparoscopic hysterectomy to remove HUGE fibroid uteri ISN'T > experimental and investigational? From what I viewed this past weekend, > you can NOT convince me of that. But, since the " hysterectomy, " per se, > is well accepted among the medical community, these procedures are not > being rejected by insurance providers or even heavily scrutinized by any > IRB. They damn well should be. On both counts. In fact, any group of > physicians who specifically identifies its goals to " ...test and define > their upper limits " should be under tight scrutiny by IRB for every > single procedure performed by any given member. Since many of these > members perform their surgery in outpatient surgi-centers, that kind of > oversight will most likely never occur. > > Now, an added bit of irony. As all of us are aware, symptomatic uterine > fibroids disproportionately impact African American women. African > American women are the most likely to undergo hysterectomy in this > nation, and generally do so at an age much younger than any other ethnic > group, frequently experiencing surgical menopause as an immediate result > of the procedure. African American women also disproportionately fill > the death statistics when it comes to cardiovascular disease. According > to Medicare Statistics, and as reported by the Society for Women's > Health Research in their Fall 2001 newsletter: > > " African-American women have higher coronary heart disease (CHD) > mortality rates than white women...more African-American women have > hypertension, diabetes and obesity, all important risk factors for heart > disease... " > > As is menopause. Regardless of how or when one reaches menopause, there > is indeed associative health issues related to menopause that should be > of grave concern to women and physicians alike. Although there is > relatively nonexistent research to pull many of the currently available > statistics apart for race-specific relative association to the > hysterectomy, given the multitude of high quality and large patient > population studies that ARE available which distinctly associate > increased cardiovascular events to the hysterectomy, one must wonder at > the blatant lack of understanding displayed by gynecologists routinely > performing hysterectomy for uterine fibroids on the long-term outcomes > of the primary patient population undergoing this procedure. > > Aye, here's the rub....the One Kilo Club, along with the Extreme > Laparoscopy Society, will be venturing to South Africa next summer for > the " Extreme Safari Conference. " After a day or so of " conference-like " > events, this group has many activities planned that extend well beyond > that of any educational conference. Planned activities one may opt for > include: big game fishing, aromatherapy, kayaking, and fly-fishing. > Optional extras include: " hunters head off to find the trophy of their > dreams " and bush survival techniques. On the sixth evening (which > happens to be July 4), an extravagant " White Mischief Dinner " is > planned, billed as " ...A spectacular evening with Zulu Dancers, praise > singers and sangomas to entertain you on the celebrating of your > Independence Day. " Dancing and celebrating America's Independence Day > in true African Style (as promoted in the handout for this event). > > Um, excuse me here for interrupting such a terrifically planned trip > which honestly appears to be quite a wonderful educational experience in > terms of visiting South Africa...but, given the patient population who > PAID for this trip by serving up their bodies on a gurney back in the > states, I honestly have to question the overall motivation behind this > trip and sensitivity level of this group of physicians. Oh, and don't > even get me started discussing the idea of " celebrating America's > Independence Day in true African Style. " Another issue entirely off > topic and politically charged in a realm that exceeds medical concerns > presented in this email. > > Okay. So let's back up a bit. Is a group such as the One Kilo Club > necessary for the advancement of laparoscopy? Does this group serve a > valuable purpose towards developing protocol and educational materials > that would advance a laparoscopists' skills in performing minimally > invasive hysterectomy for those women who would desire such treatment? > > In a word, no. There is absolutely nothing in terms of education or > advancement of laparoscopic skills or techniques that could not be > accomplished through any of the mainstream laparoscopic professional > societies, including the AAGL, formed for precisely this purpose. > Indeed, much -- if not all -- of the work done by members of the One > Kilo Club had ample opportunity for display and discussion at the AAGL > conference. So, one might ask, what IS the driving influence behind the > development of this kind of club? If all of the " positive " points > driving the formation of this club are readily accomplished through more > established organizational meetings such as the AAGL conference I > attended, then that would only leave one to speculate on the more > negative driving influences that may have played a role in the formation > of this " elite " club. Power, ego, competition, misogynism... > > I've debated how to write this email for days now but have known, based > on continued correspondence from women, that it was an issue that could > not be ignored. I am torn by the knowledge of many of the members of > the One Kilo Club's technical expertise and care and handling of > patients who have specifically sought out their medical skills for the > treatment of endometriosis, prolapse, and laparoscopic or hysteroscopic > myomectomy. Truly, many possess incredible laparoscopic skills. > Including Dr. Lyons and Dr. Barbara Levy. It saddens me terribly > to learn that physicians whom I've respected in the past are so > unfulfilled in their work that they must resort to titillating > adventures into extreme laparoscopy at the price of any given woman's > potential health outcome and the braggart behavior seemingly supported > by groups like the One Kilo Club. > > “Once you decide to titillate instead of illuminate...you create a > climate of expectation that requires a higher and higher level of > intensity.” Bill Moyers > > An apropos quote and one that scares me, in terms of this medical > group. I have to ask: how many women will pay the price of death or > extreme morbidity as a result of competition from members of this > group? I would wag my finger and say " shame, shame " to this group of > physicians -- but I honestly doubt that a single one of them would give > a rip. > > Luckily, all gynecologists are not like this. Many, many more > gynecologists than those that comprise the One Kilo Group or Extreme > Laparoscopy Society honestly do care about their patients and attend > conferences such as the AAGL to learn more and share with their peers > what they've learned. I was extremely pleased to see videos sharing > laparoscopic or hysteroscopic myomectomy, endometriosis removal, and > reparative prolapse techniques along with discussion of patient outcome > that was honorable and ethical. As it should be. > > During live telesurgery displaying hysteroscopic myomectomy technique, > Dr. Indman joked about starting a 1,000 mg club...for those who > could remove such small tissue hysteroscopically while preserving the > uterus per the patient's desires. Honestly now, is that such a bad > idea? Pushing the limits of how to eliminate disease and/or surgically > repair the uterus while retaining it for the betterment of long-term > health outcomes for patients? Long overdue, if you ask me. Maybe > that's precisely what we need. A Uterine Preservation Society. Made up > of caring researchers, physicians, surgeons -- all who want to advance > the medical science behind disease issues and treatment outcomes that > might actually allow a woman to keep her uterus. We spend more time, > money, and energy trying to save trees in this nation than we do saving > the uterus or ovaries. Ridiculous. Maybe it's time we moved to > proactively change that. > > To those of you in the U.S., Happy Thanksgiving -- but hope you left > room for " food for thought " as I know I've presented a great deal of > precisely that with this email. My daughter is home from college for > the weekend and I've only just begun preparing the vegan half of our > meal -- including a vegan " roast " with stuffing and a vegan pumpkin > pie. Must try to push my hiney back into the kitchen and let this issue > " go " for now. Even so, just looking at my daughter gives me pause for > thought on her future health and potential experience with reproductive > disease issues over time, as well as the doctors we entrust to care for > not only ourselves, but our children as they grow into adults. We've > come a long way in medicine, that's for certain. But stopping at the > hysterectomy and labeling it the " definitive cure " for all that ails a > woman's reproductive system is hardly anything to be thankful over. We > must take steps to work together and collectively move forward and > change the future of women's healthcare for the generations of young > women to come who will step off into a medical abyss -- much as many of > us have -- if we don't. > > I welcome your input and commentary in the coming days as I would truly > like to know what others think about all of this. I don't like forming > opinions in a vacuum and would like to read what all sides have to say. > Since most physicians and researchers on the uterinefibroids list group > do not post email to the group, please share with me your thoughts in > private email, if you feel you can. If I've missed something, in > defense of the One Kilo Club, I certainly want to know about it. > > Carla Dionne > Executive Director > National Uterine Fibroids Foundation > > 1 (877) 553-NUFF > mailto:carla@... > http://www.NUFF.org > /list/uterinefibroids > Author, " Sex, Lies, and the Truth About Uterine Fibroids " > > " 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2001 Report Share Posted November 22, 2001 What a surprise... I clicked on your link to the one kilo club and almost all are men. No surprise at all... I am glad that I had a surgeon who truly was interested only in the benefit of his patient. I have also resigned myself to the fact that I will most likely have issues with fibroids again (I am 31)and that it will be a battle up until menopause. Thank you, Carla, for sharing this information. Also, I am curious -- were you able to attend this seminar on you own, or were you invited? If you were able to attend this seminar on your own, would you mind posting upcoming seminars on this site so that those of us locally could attend? Of course those of the one kilo club probably would only want those of their own in attnedance! Take care and happy Thanksgiving! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 Carla, thank you for your truly eloquent thoughts. And, Happy Thanksgiving to you and to your daughter. I've been going to doctors about fibroid-related issues since last March. Before that, I didn't have to see a doctor very often. Medicine is practiced on patients. I am continually amazed at how many doctors don't practice a type of medicine that is patient-centered. But in her book " Women's Bodies, Women's Wisdom " , Christiane Northrup says that we should remain positive that the Universe will bring us what we need. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 In a message dated 11/23/01 9:43:12 AM Pacific Standard Time, cdionne@... writes: > The Universe brought Christiane Northrup a myomectomy (along with a > divorce) after all of the alternative remedies she tried failed > miserably and her fibroid grew to soccer size. > Carla: I know that. Although, I didn't recall that her fibroid grew to the size of a soccer ball. What is your point? Do you think that the alternative remedies she tried have no scientific basis? Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 what a hideous club, even the name smacks of objectifying women. a group of threatened doctors trying to maintain their stance amid a now wash of logic and info worldwide. awful. gg Carla Dionne wrote: > Greetings to all, > > Having just come home from the annual American Association of > Gynecologic Laparoscopists (AAGL - http://www.aagl.com) conference held > in San Francisco this year, I wanted to make a few comments about the > One Kilo Club -- as previously mentioned on the Sans Uteri list after > several women attended the HERS conference this year -- but also > discussed rather hot and heavily offline among many women of both the > Sans Uteri and uterinefibroids list groups. I've been cc:d on many > communications regarding this club from a wide range of women and > medical professionals and feel that it might be more appropriate to just > get this discussion out in the open so that medical professionals who > lurk on these list groups can also be aware of some of the issues and > emotions involved. I'd prefer to separate out my communication > regarding the AAGL conference as much as possible from this email and > report on the AAGL itself in a separate email some time next week. > > First of all, I want to say that I share both shock and disgust over the > formation of this group of physicians into a formalized " educational " > group promoting the learned techniques of what can only be considered > " extreme " laparoscopic surgery focused primarily on the hysterectomy and > even more specifically on huge fibroid uteri. To become a member, one > must prove they've laparoscopically removed a one kilo fibroid uterus > without resorting to laparotomy. One kilo = ~2.2 pounds. > > During this past weekend, I watched well over 30 videos showing many > surgeons performing hysterectomy. The most extreme surgeries viewed > were performed by Marco Pelosi II, the founder of the One Kilo Club, and > the morcellation of a 2600 g fibroid uterus (~5.7 pounds) was > enthusiastically applauded in one session that I attended. This mass, > as well as the surgical technique used to remove it, would certainly NOT > fit the description of uteri handling found in the poem on the home page > on the One Kilo Club's website: > > http://www.onekiloclub.org > > " Oh, Lion, clamp gently. > Pull the womb respectfully out. " > > Not even close. Nor was the reaction of the crowd I witnessed nearing > anything that might remotely resemble " respect. " It made me ill. But, > Marco Pelosi II beamed with pride from the podium at the audience's wild > applause. Honestly, I was ashamed of even being in the audience to > witness this man's behavior and his peer's reactions. Nauseating. At > best. (For those of you who haven't seen a laparoscopic hysterectomy, > morcellation of a fibroid uterus is much closer in description to how > sausage is ground up than it is to " pull the womb respectfully out " .) > > As a sidenote, to morcellate out this much fibroid uterus would mean > that the patient may have been in surgery beyond 4 hours. Much > lengthier timeframe than traditional surgical methods would have taken > to remove this mass and an issue that, I believe, should be of > considerable concern in regard to the safety of the patient. > Lyons reported in another session that the typical fibroid uterus half > this size in mass took him, if I remember correctly, 3 hours to remove > supracervically. > > There are many, many women in this country supporting the work of these > doctors. Giving testimonials of their care and treatment. Providing > " proof " that what these doctors are doing is for the betterment of ALL > women with huge fibroid uteri. Indeed, only two weeks prior to this > conference I was sitting in an airport talking to an African American > nurse who's mother, as it turned out, had sought out the care of one of > the members of the One Kilo Club. She underwent a laparoscopic > hysterectomy and was thrilled with the results. But, when I probed more > deeply about medical care and physical health outcomes, it surprised me > to learn what her mother considered " positive results " over which she > was so " thrilled. " Her primary objective in undergoing laparoscopic > hysterectomy? To save money. To return to work quickly and to > eliminate the monthly cost of tampons, pads, diapers, pain medication, > etc. On the gurney going into the operating room, her mother said to > her " I'm already counting the savings and spending the money... " . At > that point, her daughter calculated that her mother spent $150-200 a > month on " female products " and pain relievers. > > In discussing the long-term potential health outcomes of her mother's > surgery with this woman's daughter, it was chilling to both of us to > consider just how much the medical community has not chosen to research > this disease but rather capitalize off of our suffering through either > " watch and wait " management pharmaceuticals or extreme surgery > accompanied by, more than likely, many more years of pharmaceutical > prescriptive remedies utilized in an attempt at replacing the hormones > lost via surgery. In discussing some of this with her mother prior to > surgery, she was told " ...at least hormone replacement therapy is > covered by insurance " and all other concerns she expressed (as a nurse) > were completely dismissed by her mother as being irrelevant in > relationship to the financial need to eliminate the monthly cost of > supporting her disease symptoms. > > The issues are complex and run much, much deeper than simply the list of > doctors who are members of this club. And, if you think the ideology of > this club stops at its membership doors, you would be incorrect in that > assumption. There is another club: The Extreme Laparoscopy Society -- > I couldn't locate any website for them, however. I believe it to be a > Canadian formed group led by Dr. Larry Demco. And, take a look at this > website: > > http://www.womenssurgerygroup.com/ > > A very inviting website providing information on a variety of women's > healthcare issues. At least four members of this physician's group are > members of the One Kilo Club. Including Dr. Barbara Levy. Dr. Levy is > a past president of the AAGL and a highly respected gynecologist in > laparoscopy. She was actively promoting the vaginal hysterectomy at > this conference and at one point indicated she had done over 500 to date > with relatively low morbidity and high patient satisfaction. She uses > her own patient population " data " to convince patients of the > superiority of the vaginal hysterectomy. Quite convincingly too, or so > it would seem. " In her hands " -- a statement she frequently used -- you > could anticipate an excellent surgical outcome from vaginal hysterectomy > and apparently little to no sexual dysfunction based on her own > collected outcomes data. She is a seasoned female gynecologist with an > extremely convincing presentation. > > Interesting to note, however, that when I asked doctors who made these > kinds of statements about sexual function post-hysterectomy, that none > of them had consulted with sexual function experts, some didn't know of > the recent findings of the clitoral extension of erectile tissue into > the anterior vaginal wall (1998), none could identify even so much as > one validated sexual function questionnaire, and all completely > dismissed the need for a validated fibroid related Quality of Life > questionnaire. In fact, patient validation of ANY questionnaire was > pooh-poohed completely by Dr. Lyons from Atlanta, GA. Since Lyons' > group presented " long-term " data on sexual function after supracervical > hysterectomy in over 300 patients since 1996, I approached him after the > presentation to learn more about the questions he used to determine the > outcome presented (which, BTW, showed, if I remember correctly, 25% of > the patients reporting reduced orgasmic intensity). Did he use a > validated sexual function instrument and, if so, which one? Nope. > Nada. Didn't even show visual recognition of ANY of the sexual function > instruments I rattled off to him. In the end, he indicated to me that > he MADE UP his questions based on what and how HE wanted to know/ask and > completely dismissed the need for any input from sexual function experts > or the use of a validated questionnaire instrument. It would seem to me > that the concept of " researcher bias " was completely lost on this > clinician. Completely. Much as it was on Dr. Barbara Levy. > > Since both Dr. Lyons and Dr. Levy are members of the One Kilo Club, both > are highly respected and considered to be excellent gynecological > surgeons, and both also happen to be researchers who have published > their data in the past, learning of their research methodology and > perspective on the use of validated instruments was quite unnerving to > me. It also seems to me a bit egotistical and extremely self-serving > and pious when you calculate in the factor of how vehemently they've > gone after interventional radiologists for the use of embolization as a > fibroid treatment method. > > So, extreme laparoscopic hysterectomy to remove HUGE fibroid uteri ISN'T > experimental and investigational? From what I viewed this past weekend, > you can NOT convince me of that. But, since the " hysterectomy, " per se, > is well accepted among the medical community, these procedures are not > being rejected by insurance providers or even heavily scrutinized by any > IRB. They damn well should be. On both counts. In fact, any group of > physicians who specifically identifies its goals to " ...test and define > their upper limits " should be under tight scrutiny by IRB for every > single procedure performed by any given member. Since many of these > members perform their surgery in outpatient surgi-centers, that kind of > oversight will most likely never occur. > > Now, an added bit of irony. As all of us are aware, symptomatic uterine > fibroids disproportionately impact African American women. African > American women are the most likely to undergo hysterectomy in this > nation, and generally do so at an age much younger than any other ethnic > group, frequently experiencing surgical menopause as an immediate result > of the procedure. African American women also disproportionately fill > the death statistics when it comes to cardiovascular disease. According > to Medicare Statistics, and as reported by the Society for Women's > Health Research in their Fall 2001 newsletter: > > " African-American women have higher coronary heart disease (CHD) > mortality rates than white women...more African-American women have > hypertension, diabetes and obesity, all important risk factors for heart > disease... " > > As is menopause. Regardless of how or when one reaches menopause, there > is indeed associative health issues related to menopause that should be > of grave concern to women and physicians alike. Although there is > relatively nonexistent research to pull many of the currently available > statistics apart for race-specific relative association to the > hysterectomy, given the multitude of high quality and large patient > population studies that ARE available which distinctly associate > increased cardiovascular events to the hysterectomy, one must wonder at > the blatant lack of understanding displayed by gynecologists routinely > performing hysterectomy for uterine fibroids on the long-term outcomes > of the primary patient population undergoing this procedure. > > Aye, here's the rub....the One Kilo Club, along with the Extreme > Laparoscopy Society, will be venturing to South Africa next summer for > the " Extreme Safari Conference. " After a day or so of " conference-like " > events, this group has many activities planned that extend well beyond > that of any educational conference. Planned activities one may opt for > include: big game fishing, aromatherapy, kayaking, and fly-fishing. > Optional extras include: " hunters head off to find the trophy of their > dreams " and bush survival techniques. On the sixth evening (which > happens to be July 4), an extravagant " White Mischief Dinner " is > planned, billed as " ...A spectacular evening with Zulu Dancers, praise > singers and sangomas to entertain you on the celebrating of your > Independence Day. " Dancing and celebrating America's Independence Day > in true African Style (as promoted in the handout for this event). > > Um, excuse me here for interrupting such a terrifically planned trip > which honestly appears to be quite a wonderful educational experience in > terms of visiting South Africa...but, given the patient population who > PAID for this trip by serving up their bodies on a gurney back in the > states, I honestly have to question the overall motivation behind this > trip and sensitivity level of this group of physicians. Oh, and don't > even get me started discussing the idea of " celebrating America's > Independence Day in true African Style. " Another issue entirely off > topic and politically charged in a realm that exceeds medical concerns > presented in this email. > > Okay. So let's back up a bit. Is a group such as the One Kilo Club > necessary for the advancement of laparoscopy? Does this group serve a > valuable purpose towards developing protocol and educational materials > that would advance a laparoscopists' skills in performing minimally > invasive hysterectomy for those women who would desire such treatment? > > In a word, no. There is absolutely nothing in terms of education or > advancement of laparoscopic skills or techniques that could not be > accomplished through any of the mainstream laparoscopic professional > societies, including the AAGL, formed for precisely this purpose. > Indeed, much -- if not all -- of the work done by members of the One > Kilo Club had ample opportunity for display and discussion at the AAGL > conference. So, one might ask, what IS the driving influence behind the > development of this kind of club? If all of the " positive " points > driving the formation of this club are readily accomplished through more > established organizational meetings such as the AAGL conference I > attended, then that would only leave one to speculate on the more > negative driving influences that may have played a role in the formation > of this " elite " club. Power, ego, competition, misogynism... > > I've debated how to write this email for days now but have known, based > on continued correspondence from women, that it was an issue that could > not be ignored. I am torn by the knowledge of many of the members of > the One Kilo Club's technical expertise and care and handling of > patients who have specifically sought out their medical skills for the > treatment of endometriosis, prolapse, and laparoscopic or hysteroscopic > myomectomy. Truly, many possess incredible laparoscopic skills. > Including Dr. Lyons and Dr. Barbara Levy. It saddens me terribly > to learn that physicians whom I've respected in the past are so > unfulfilled in their work that they must resort to titillating > adventures into extreme laparoscopy at the price of any given woman's > potential health outcome and the braggart behavior seemingly supported > by groups like the One Kilo Club. > > “Once you decide to titillate instead of illuminate...you create a > climate of expectation that requires a higher and higher level of > intensity.” Bill Moyers > > An apropos quote and one that scares me, in terms of this medical > group. I have to ask: how many women will pay the price of death or > extreme morbidity as a result of competition from members of this > group? I would wag my finger and say " shame, shame " to this group of > physicians -- but I honestly doubt that a single one of them would give > a rip. > > Luckily, all gynecologists are not like this. Many, many more > gynecologists than those that comprise the One Kilo Group or Extreme > Laparoscopy Society honestly do care about their patients and attend > conferences such as the AAGL to learn more and share with their peers > what they've learned. I was extremely pleased to see videos sharing > laparoscopic or hysteroscopic myomectomy, endometriosis removal, and > reparative prolapse techniques along with discussion of patient outcome > that was honorable and ethical. As it should be. > > During live telesurgery displaying hysteroscopic myomectomy technique, > Dr. Indman joked about starting a 1,000 mg club...for those who > could remove such small tissue hysteroscopically while preserving the > uterus per the patient's desires. Honestly now, is that such a bad > idea? Pushing the limits of how to eliminate disease and/or surgically > repair the uterus while retaining it for the betterment of long-term > health outcomes for patients? Long overdue, if you ask me. Maybe > that's precisely what we need. A Uterine Preservation Society. Made up > of caring researchers, physicians, surgeons -- all who want to advance > the medical science behind disease issues and treatment outcomes that > might actually allow a woman to keep her uterus. We spend more time, > money, and energy trying to save trees in this nation than we do saving > the uterus or ovaries. Ridiculous. Maybe it's time we moved to > proactively change that. > > To those of you in the U.S., Happy Thanksgiving -- but hope you left > room for " food for thought " as I know I've presented a great deal of > precisely that with this email. My daughter is home from college for > the weekend and I've only just begun preparing the vegan half of our > meal -- including a vegan " roast " with stuffing and a vegan pumpkin > pie. Must try to push my hiney back into the kitchen and let this issue > " go " for now. Even so, just looking at my daughter gives me pause for > thought on her future health and potential experience with reproductive > disease issues over time, as well as the doctors we entrust to care for > not only ourselves, but our children as they grow into adults. We've > come a long way in medicine, that's for certain. But stopping at the > hysterectomy and labeling it the " definitive cure " for all that ails a > woman's reproductive system is hardly anything to be thankful over. We > must take steps to work together and collectively move forward and > change the future of women's healthcare for the generations of young > women to come who will step off into a medical abyss -- much as many of > us have -- if we don't. > > I welcome your input and commentary in the coming days as I would truly > like to know what others think about all of this. I don't like forming > opinions in a vacuum and would like to read what all sides have to say. > Since most physicians and researchers on the uterinefibroids list group > do not post email to the group, please share with me your thoughts in > private email, if you feel you can. If I've missed something, in > defense of the One Kilo Club, I certainly want to know about it. > > Carla Dionne > Executive Director > National Uterine Fibroids Foundation > > 1 (877) 553-NUFF > mailto:carla@... > http://www.NUFF.org > /list/uterinefibroids > Author, " Sex, Lies, and the Truth About Uterine Fibroids " > > " 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 SiCanto@... wrote: > > But in her book " Women's Bodies, Women's Wisdom " , Christiane Northrup says > that we should remain positive that the Universe will bring us what we need. The Universe brought Christiane Northrup a myomectomy (along with a divorce) after all of the alternative remedies she tried failed miserably and her fibroid grew to soccer size. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 SiCanto@... wrote: > > cdionne@... writes: > > > The Universe brought Christiane Northrup a myomectomy (along with a > > divorce) after all of the alternative remedies she tried failed > > miserably and her fibroid grew to soccer size. > > > > Carla: > > I know that. Although, I didn't recall that her fibroid grew to the size of > a soccer ball. > What is your point? Do you think that the alternative remedies she tried > have no scientific basis? My point is, she spends an awful lot of time leading women down the path to alternative remedies at great expense to all who choose to do so (including me in the past), when in fact those very remedies proved ineffectual for her own fibroid condition and there is little science, if any, to support many of those suggestions. " Soccer ball " was her own description of her fibroid situation, if I remember correctly, when she discussed this on Oprah, along with the suppression of her creative energies which she attributed (in part) to her marriage. ly, I was quite troubled by this when she brought it up on national TV. Primarily because I just don't see where she, specifically, has any suppressed creative energies whatsoever. Books, videos, lecture circuit, etc. are all creative outlets that she had to have actively chosen -- believe me, taking on the writing of a book (much less 2) is not something someone " forces " you to do. And I don't think anyone forced her to go to medical school either. In listening to her talk about this, I have continued to be stymied by where she is coming from, personally. The greatest science she could possibly present that is indeed verifiable is related to stress and its impact on our autoimmune and endocrine systems. Many of her alternative remedies are targeted towards reducing stress and reasonable to presume they may have an impact on one's overall health condition. In no way, shape, or form is it my intent to discredit any specific suggestion of Dr. Northrup's. Rather, to more completely inform the group of the actual outcome of her own journey down the path to alternative treatments, which Northrup is choosing to lead a great many women. I think that disclosure is fair, and particularly on this list group when not all participants have read her materials. Dr. Northrup has created some of the best educational videos on women's health care currently available and makes medical information highly accessible to the layperson. No doubt about it. She's worked very, very hard over a multitude of years and deserves respect for all that she has done for women's health. Her fibroid journey is one I fully identify with. (Well, except for blaming the marriage and suppression of creative energy part.) However, because of her lack of success with alternative remedies, my own lack of success with alternative remedies, the lack of science in this understudied area of naturopathic and holistic medicine, and interviews with many naturopaths in this nation over the last 3 years, I didn't choose to highlight this area of the treatment journey in my own book in any tremendous detail. Furthermore, I highly recommend that any woman who wants to attempt naturopathic/holistic treatments seek out the guidance of a licensed naturopath or a research program in alternative medicine so that time, money, and energy isn't ill spent trying everything possible in a willy nilly fashion. Help us advance the science in alternative medicine by seeking out practitioners specifically studying this for fibroids and/or menorrhagia. There may well be a remedy within all of our reaches some day. You never know. But, alternative therapies won't go anywhere near the masses of women with fibroids (with medical community approval) unless they are advanced through mainstream medical review of the science. Also, any woman attempting naturopathic remedies for treating her fibroids is strongly encouraged to report her path and outcome to this list group. Two reasons: we do want to know if something is working (or NOT working) for any given woman AND clinicians/researchers who lurk are extremely interested in what remedies women are trying. More importantly though, we would really, really like to see women in alternative medicine studies or clinical trials report back to us the details of what they are going through and how they are progressing with the studied approach. Carla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 Well maybe its because what she really needed was the divorce-maybe it was her uc Best, Bonnie Carla Dionne wrote: > SiCanto@... wrote: > > > > But in her book " Women's Bodies, Women's Wisdom " , Christiane Northrup says > > that we should remain positive that the Universe will bring us what we need. > > The Universe brought Christiane Northrup a myomectomy (along with a > divorce) after all of the alternative remedies she tried failed > miserably and her fibroid grew to soccer size. > > Quote Link to comment Share on other sites More sharing options...
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