AAGL/One Kilo Club

[Guest guest]

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