Re: uterinefibroids digest

[Guest guest]

Re: When is treatment needed?

Hi--just want to add my story to those being told here, as it is somewhat

unusual. I was diagnosed with fibroids seven or more years ago and did

everything I could to avoid major surgery.

Doctors kept recommending hysterectomies and I kept refusing them. Finally

things got so bad I started investigating the alternatives--UAE and laser

surgery. But the laser surgeons told me they couldn't help me, and I

decided I didn't want UAE.

One of my problems was that I'd been given Lupron two or three years

before, and this drug left me with a permanent cardiac arrhytmia. Lupron is

a very dangerous drug that has never, by the way, been approved by the FDA

for shrinking fibroids. If a doctor tells you you need Lupron to shrink

fibroids before surgery, find another doctor fast, because that one hasn't

done the homework on Lupron (the National Lupron Victims' Network website

can tell you all about the drug). Also I think any doctor who recommends

that a patient take a chemotherapy drug designed for men with terminal

prostate cancer in order to make surgery " easier " (for the doctor, not for

you) is just plain lazy.

Because of the heart problem, I didn't want to chance a myemectomy, which

can be a very long surgery requiring a lot of anesthetic that I feared

could trigger tachychardia. The experience with Lupron left me very risk

averse, so I just didn't want to try another procedure as new as UAE (not

that I think it's a bad idea--it was just not for me). Ultimately I opted

for a supracervical (uterus only) abdominal hysterectomy to remove my

cantaloupe-size organ. It was a tough decision, but I had a great surgeon

and a supportive partner, so I did the deed.

Now I can't say how glad I am I made this choice. After the uterus was

removed and sent away to pathologists for analysis, I learned that I had

not only fibroids, but polyps, cysts, and something called adenomyosis--a

kind of endometriosis that is internal to the uterus and that has no cure.

In essence, the glands begin eating away at the endometrium, causing the

uterus to turn spongy and become enlarged, with severe pain and

bleeding--just like fibroids. Until very recently this disease was

impossible to detect except after surgery, although now I hear that MRIs

are proving effective. And as I said, the only cure is surgical removal of

the uterus.

My experience tells me that the " wait and see " approach is definitely not

the best one in many cases. If I had had something done about the fibroids

years ago, perhaps the adenoymosis would have been diagnosed earlier,

saving me a lot of pain and agony. I might have avoided the Lupron and thus

would have a healthy heart.

I would tentatively suggest that if consistent irregular bleeding is a

problem (outside monthly cycles) and cannot be remedied with hormones,

women should not rule out the possibility of adenomyosis. I never dreamed I

had it, but if I had known it was a possibility and could have been tested

for it--well, again I might have avoided some years of anguish.

Hope this story helps other women make more informed choices about how long

to wait--and what to look for!

[Guest guest]

Hi,

I've just joined this group and have come across some very interesting

emails. I am 44 years old and have had heavy bleeding for a few years. One

year ago I had a scan and it was discovered that I have fibroids. I had an

IUD containing progesterone fitted and for some months the bleeding was

reduced to a 'normal' level. However, the last 3 months have been terrible

again. Worse than ever. I am scheduled to go to my GP on Thursday 12th to

discuss options. Talk is of a hyst. but I don't want this. I have seen

the terms 'myomectomy' and 'UAE' used in some of your messages and would

like to know what they mean as I haven't come across them before. I would

like to visit my GP forearmed with more knowledge of different treatments

than I have already. Would someone please enlighten me.

Carole Hope

Re: uterinefibroids digest

> Re: When is treatment needed?

>

> Hi--just want to add my story to those being told here, as it is somewhat

> unusual. I was diagnosed with fibroids seven or more years ago and did

> everything I could to avoid major surgery.

> Doctors kept recommending hysterectomies and I kept refusing them. Finally

> things got so bad I started investigating the alternatives--UAE and laser

> surgery. But the laser surgeons told me they couldn't help me, and I

> decided I didn't want UAE.

>

> One of my problems was that I'd been given Lupron two or three years

> before, and this drug left me with a permanent cardiac arrhytmia. Lupron

is

> a very dangerous drug that has never, by the way, been approved by the FDA

> for shrinking fibroids. If a doctor tells you you need Lupron to shrink

> fibroids before surgery, find another doctor fast, because that one hasn't

> done the homework on Lupron (the National Lupron Victims' Network website

> can tell you all about the drug). Also I think any doctor who recommends

> that a patient take a chemotherapy drug designed for men with terminal

> prostate cancer in order to make surgery " easier " (for the doctor, not for

> you) is just plain lazy.

>

> Because of the heart problem, I didn't want to chance a myemectomy, which

> can be a very long surgery requiring a lot of anesthetic that I feared

> could trigger tachychardia. The experience with Lupron left me very risk

> averse, so I just didn't want to try another procedure as new as UAE (not

> that I think it's a bad idea--it was just not for me). Ultimately I opted

> for a supracervical (uterus only) abdominal hysterectomy to remove my

> cantaloupe-size organ. It was a tough decision, but I had a great surgeon

> and a supportive partner, so I did the deed.

>

> Now I can't say how glad I am I made this choice. After the uterus was

> removed and sent away to pathologists for analysis, I learned that I had

> not only fibroids, but polyps, cysts, and something called adenomyosis--a

> kind of endometriosis that is internal to the uterus and that has no cure.

> In essence, the glands begin eating away at the endometrium, causing the

> uterus to turn spongy and become enlarged, with severe pain and

> bleeding--just like fibroids. Until very recently this disease was

> impossible to detect except after surgery, although now I hear that MRIs

> are proving effective. And as I said, the only cure is surgical removal of

> the uterus.

>

> My experience tells me that the " wait and see " approach is definitely not

> the best one in many cases. If I had had something done about the fibroids

> years ago, perhaps the adenoymosis would have been diagnosed earlier,

> saving me a lot of pain and agony. I might have avoided the Lupron and

thus

> would have a healthy heart.

>

> I would tentatively suggest that if consistent irregular bleeding is a

> problem (outside monthly cycles) and cannot be remedied with hormones,

> women should not rule out the possibility of adenomyosis. I never dreamed

I

> had it, but if I had known it was a possibility and could have been tested

> for it--well, again I might have avoided some years of anguish.

>

> Hope this story helps other women make more informed choices about how

long

> to wait--and what to look for!

>

>

>

> ------------------------------------------------------------------------

> Click Here to apply for a NextCard Internet Visa and start earning

> FREE travel in HALF the time with the NextCard Rew@rds Program.

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>

>

> eGroups.com home: /group/uterinefibroids

> - Simplifying group communications

>

>

>

>

>

[Guest guest]

-----Original Message-----From: hope2001 Sent: Monday, August 09, 1999 3:48 PMTo: uterinefibroidsegroupsSubject: Re: uterinefibroids digest

Hi,

I've just joined this group and have come across some very interesting

emails. I am 44 years old and have had heavy bleeding for a few years. One

year ago I had a scan and it was discovered that I have fibroids. I had an

IUD containing progesterone fitted and for some months the bleeding was

reduced to a 'normal' level. However, the last 3 months have been terrible

again. Worse than ever. I am scheduled to go to my GP on Thursday 12th to

discuss options. Talk is of a hyst. but I don't want this. I have seen

the terms 'myomectomy' and 'UAE' used in some of your messages and would

like to know what they mean as I haven't come across them before. I would

like to visit my GP forearmed with more knowledge of different treatments

than I have already. Would someone please enlighten me.

Carole Hope Dear Carole, I'm new to all this too, having just been diagnosed with fibroids. I can tell you that myomectomy is the removal of fibroids without removing the uterus. The links below should help.

A hysterectomy may not be necessary. You may want to look around for a doctor in your area who does myomectomy or cutting out the fibroid tumour(s). The other procedure available is embolization, they cut off the blood supply to the fibroid and it then shrinks and the symptoms such as excessive bleeding stop.Here are some really good articles to help you understand these procedures.Uterine fibroids:http://fibroid.orghttp://www.endohelp.com/fibroids.htmhttp://www.obgyn.net/women/articles/fibroids_dah.htmhttp://www.fibroids.net/http://www.gynalternatives.com/fibroids.htmhttp://www.obgyn.net/AH/articles/fibroids/page_5.htmIf a hysterectomy is what you choose, then here are some excellent resources for support and education:Hystersisters Online (even has a section on post surgery)http://www.hystersisters.orghttp://www.dca.net/hers/http://www.obgyn.net/ah/ah.htmHysterectomy Alaternatives http://www.repmed.com/Surgical/Medical Menopausehttp://www.metlife.com/Lifeadvice/Health/Docs/menopause8.htmlhttp://www.obgyn.net/meno/links/prem.htm

[Guest guest]

Robyn--

Not to beat the Lupron horse to death, but let me say this. You were indeed

lucky. You may not feel that way if you develop problems in the future--a

distinct possibility.

Consider this, however: your doctor undoubtedly knew about problems with

Lupron. If she didn't, she should have. Whatever, she played Russian

roulette with your life--don't mean to be dramatic, but women and men have

died from what are believed to be the effects of Lupron. Others, like me,

have been left with permanent disabilities. Is a doctor who would place you

at that kind of risk " one of the best " ?

Surgery for fibroids IS possible without Lupron. Given the options

available to women with fibroids, including UAE, it is a travesty to

prescribe such a dangerous drug. It is, as I said, little more than Russian

roulette. Are our lives really worth that little?

[Guest guest]

Robyn--

Not to beat the Lupron horse to death, but let me say this. You were indeed

lucky. You may not feel that way if you develop problems in the future--a

distinct possibility.

Consider this, however: your doctor undoubtedly knew about problems with

Lupron. If she didn't, she should have. Whatever, she played Russian

roulette with your life--don't mean to be dramatic, but women and men have

died from what are believed to be the effects of Lupron. Others, like me,

have been left with permanent disabilities. Is a doctor who would place you

at that kind of risk " one of the best " ?

Surgery for fibroids IS possible without Lupron. Given the options

available to women with fibroids, including UAE, it is a travesty to

prescribe such a dangerous drug. It is, as I said, little more than Russian

roulette. Are our lives really worth that little?

[Guest guest]

you do have a point. I was lucky and I could still get some effects from

the lupron down the road. But as I said I went to four doctors and no one

would do the myo without shrinking to fibroids first so even with all that I

read I had to get the shots. If I had to go on them for 6 months for endo like

a lot of people do I don't think I could be on it for that long.

I don't feel that my doctor played Russian Roulette I really didn't have a

choice at the time because my fibroids were growing at a rapid rate. In my

case I made the appropriate decision but I can understand how you feel.

Robyn

Chalmers wrote:

> Robyn--

>

> Not to beat the Lupron horse to death, but let me say this. You were indeed

> lucky. You may not feel that way if you develop problems in the future--a

> distinct possibility.

>

> Consider this, however: your doctor undoubtedly knew about problems with

> Lupron. If she didn't, she should have. Whatever, she played Russian

> roulette with your life--don't mean to be dramatic, but women and men have

> died from what are believed to be the effects of Lupron. Others, like me,

> have been left with permanent disabilities. Is a doctor who would place you

> at that kind of risk " one of the best " ?

>

> Surgery for fibroids IS possible without Lupron. Given the options

> available to women with fibroids, including UAE, it is a travesty to

> prescribe such a dangerous drug. It is, as I said, little more than Russian

> roulette. Are our lives really worth that little?

>

>

>

> ------------------------------------------------------------------------

>

> eGroups.com home: /group/uterinefibroids

> - Simplifying group communications

[Guest guest]

you do have a point. I was lucky and I could still get some effects from

the lupron down the road. But as I said I went to four doctors and no one

would do the myo without shrinking to fibroids first so even with all that I

read I had to get the shots. If I had to go on them for 6 months for endo like

a lot of people do I don't think I could be on it for that long.

I don't feel that my doctor played Russian Roulette I really didn't have a

choice at the time because my fibroids were growing at a rapid rate. In my

case I made the appropriate decision but I can understand how you feel.

Robyn

Chalmers wrote:

> Robyn--

>

> Not to beat the Lupron horse to death, but let me say this. You were indeed

> lucky. You may not feel that way if you develop problems in the future--a

> distinct possibility.

>

> Consider this, however: your doctor undoubtedly knew about problems with

> Lupron. If she didn't, she should have. Whatever, she played Russian

> roulette with your life--don't mean to be dramatic, but women and men have

> died from what are believed to be the effects of Lupron. Others, like me,

> have been left with permanent disabilities. Is a doctor who would place you

> at that kind of risk " one of the best " ?

>

> Surgery for fibroids IS possible without Lupron. Given the options

> available to women with fibroids, including UAE, it is a travesty to

> prescribe such a dangerous drug. It is, as I said, little more than Russian

> roulette. Are our lives really worth that little?

>

>

>

> ------------------------------------------------------------------------

>

> eGroups.com home: /group/uterinefibroids

> - Simplifying group communications

[Guest guest]

Carla and other women--

I'm so sorry to read about the posts from women with insensitive clods for

doctors. It is just awful how some OB/GYNs treat women. And these " scare "

tactics about fibroids and cancer are unconscionable, since the chance of

having a cancerous fibroids is miniscule.

Is it possible to sue a doctor who performs a complete hysterectomy on a

woman with fibroids? I ask because as far as I know, if a woman elects to

have a hysterectomy for fibroids, she needs only a supracervical

hyterectomy, which removes the uterus and leaves everything else intact. My

surgeon removed my canteloupe-size uterus, leaving ovaries and cervice so I

would have maximum health and sexual functioning. He agreed that nothing

else had to go and satisfied himself by having a look around once he got in

there.

Of course I believe every woman should be informed of myemectomy, ablation,

and UAE. I hope that most women with fibroids can use one of these methods.

Anyone have any idea how to spread the word about the alternatives? But

when hyst is necessary, as in my case. I had medical reasons for rejecting

myemectomy, my uterus was too messed up for ablation, and I didn't want UAE

because I was already so weak. In the end it turned out I had adenomyosis,

which means hyst, since it can't be cured. But all I lost was the uterus.

Why can't surgeons offer this option? I might have avoided several years of

misery had I known about it before. And several women with complete hysts

have said that if they'd known, they would have insisted on a partial.

I can tell you that the operation itself is a nonevent, the pain minimal,

and recovery not so bad (hey, I enjoyed watching old Bette films and

eating takeout for a couple of weeks). At six weeks I am doing well--I can

walk and have more energy (no more bleeding!), and sex is still fun. It's a

little weird because of the numbness from the scar and the empty place

where the uterus once was, but it is certainly still the big event it was

before! In fact, with the uterus no longer pressing down on the cervix,

both my partner and I find that sex is MUCH improved.

I surely wouldn't recommend this option until all others are exhausted. But

it is so much less scary to think you're losing just your uterus than to

think about losing everything. I still feel pretty complete, and I know I

haven't suffered as much as women with complete hysts. So one diseased

organ is gone--OK! I still have the rest of my reproductive system. But I

wonder, I really do, how many women even know partial hyst is an option.

Well, that's my comment for the day. If anyone has any questions about my

experience, I'll be glad to answer. But I think there's a real need to get

information out about options. Women shouldn't have to go through so much

abuse.

Hang in there, wimmin--

[Guest guest]

Carla and other women--

I'm so sorry to read about the posts from women with insensitive clods for

doctors. It is just awful how some OB/GYNs treat women. And these " scare "

tactics about fibroids and cancer are unconscionable, since the chance of

having a cancerous fibroids is miniscule.

Is it possible to sue a doctor who performs a complete hysterectomy on a

woman with fibroids? I ask because as far as I know, if a woman elects to

have a hysterectomy for fibroids, she needs only a supracervical

hyterectomy, which removes the uterus and leaves everything else intact. My

surgeon removed my canteloupe-size uterus, leaving ovaries and cervice so I

would have maximum health and sexual functioning. He agreed that nothing

else had to go and satisfied himself by having a look around once he got in

there.

Of course I believe every woman should be informed of myemectomy, ablation,

and UAE. I hope that most women with fibroids can use one of these methods.

Anyone have any idea how to spread the word about the alternatives? But

when hyst is necessary, as in my case. I had medical reasons for rejecting

myemectomy, my uterus was too messed up for ablation, and I didn't want UAE

because I was already so weak. In the end it turned out I had adenomyosis,

which means hyst, since it can't be cured. But all I lost was the uterus.

Why can't surgeons offer this option? I might have avoided several years of

misery had I known about it before. And several women with complete hysts

have said that if they'd known, they would have insisted on a partial.

I can tell you that the operation itself is a nonevent, the pain minimal,

and recovery not so bad (hey, I enjoyed watching old Bette films and

eating takeout for a couple of weeks). At six weeks I am doing well--I can

walk and have more energy (no more bleeding!), and sex is still fun. It's a

little weird because of the numbness from the scar and the empty place

where the uterus once was, but it is certainly still the big event it was

before! In fact, with the uterus no longer pressing down on the cervix,

both my partner and I find that sex is MUCH improved.

I surely wouldn't recommend this option until all others are exhausted. But

it is so much less scary to think you're losing just your uterus than to

think about losing everything. I still feel pretty complete, and I know I

haven't suffered as much as women with complete hysts. So one diseased

organ is gone--OK! I still have the rest of my reproductive system. But I

wonder, I really do, how many women even know partial hyst is an option.

Well, that's my comment for the day. If anyone has any questions about my

experience, I'll be glad to answer. But I think there's a real need to get

information out about options. Women shouldn't have to go through so much

abuse.

Hang in there, wimmin--

[Guest guest]

Why don't you consider Uterine Artery Embolization? You can read about it

from the other newsgroup, at http://www.eGroups.com/list/embo/ Much

less invasive than hysterectomoy!!!. I'm having it done Sept. 7, and mine

sounds same size. Good luck.

]uffdakab@... wrote:

<In any event, I sure sould appreciate some more info about the cream and

the shark cartilage. And any other <advise anyone cares to give! I'm

leaning toward a hyst, but the more I read the more confused I get.

[Guest guest]

Dear Dr. :

It was nice to read your post and to hear your interest in promoting UAE. I

have been thinking of writing to the American College of Obstetricians and

Gynecologists about something else, and I wonder if they could be of any

help to you. What about presentations at conferences, brochures to hand

out, and the like?

Your job may be a tough one given the financial incentives hsterectomy

offers OB/GYNs. Somehow gynecolgoists are going to have to deal with the

fact that they cannot go on financing their homes with hysterectomies.

Since you present a threat to conventional practice, you are unlikely to be

welcomed with open arms.

I agree that advertising locally is a good idea. I saw info about the

procedure on TV and had to ask around for local IRs who do it.

Best of luck!

At 10:50 AM 9/4/99 -0000, you wrote:

>eGroups Daily Digest: uterinefibroids has 9 new messages.

>Click here http://www.eGroups.com/list/uterinefibroids/?start=850 to read

them.

>

>-----------------------------------------------------------------

>850. Carla Dionne Re: study

>851. Tillman Uterine Fibroid Embolization

>852. Mmollyz@... Re: Uterine Fibroid Embolization

>853. Reeves Re: red meat/fibroids

>854. .Reeves@... Re: Uterine Fibroid Embolization

>855. .Reeves@... Re: study

>856. Carla Dionne Re: study

>857. Flalabtec@... Re: red meat/fibroids

>858. heidi hormel Re: Uterine Fibroid Embolization

>-----------------------------------------------------------------

>

>------------------------------ message 850 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=850

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>

>Date: Fri, 3 Sep 1999 07:39:01 -0700

>MIME-Version: 1.0

>Subject: Re: study

>Mime-Version: 1.0

>Content-Type: text/plain; charset= " iso-8859-1 "

>Content-Transfer-Encoding: 7bit

>

>> Thank you for your reply. I believe the situation for women, with

>>respect to medical care, is quite sad and that women are made to suffer

>from

>>it in so many ways. I am very sensitive to the moral and ethical

>>implications of much of what happens in the medical community. I wish that

>>we as a society took more care to respect the dignity of life and the value

>>of each person (especially women). I still believe that there are more

>>humane ways to obtain a good answer to these questions. I don't think you

>>would have posed this question had there not been an ethical dilemma in it.

>

>

>Tish,

>

>I didn't pose the question on clinical trials with myo/UFE because of any

>ethical concerns I have. I personally don't see any ethical dilemma in this

>particular kind of study as both options -- myo and UFE -- are good ones and

>either would have been acceptable to me. But I did want to know if others

>would feel differently and, perhaps, find ethical dilemma in the study.

>Your answer clearly told us that you did and I dare say that there are

>probably others who would agree with you just as there were others that

>agree with me. Neither of us are " wrong " for thinking or feeling the way we

>do. More than likely, we simply bring a different set of " cards " to the

>table for coming to our differing conclusions.

>

>A doctor that I know has just received grant monies for doing a RCT

>(randomized controlled trial) and is trying to decide what kind of control

>group to compare UFE to. Right now, there are DOZENS of studies going on

>across the country comparing UFE to myo, hyst, Lupron, etc. I think I've

>convinced him that Lupron (or ANY drug therapy) is NOT the way to go

>(something that pharmaceuticals push and could mean even more money for

>studies) and now he's looking at other options. As a physician, he is

>sincerely interested in finding out whether or not women would participate

>in this kind of trial (randomized myo/UFE). He did not want to set up his

>protocol in a vacuum, so to speak, as he cares about his patients a great

>deal and does not want to hurt anyone. Your response, which was very real,

>and Leonie's response probably represents the 2 ends of the spectrum. When

>doctors embark down roads of experimentation, I think they need to know how

>their travels are going to be received. Which is the real reason I posed

>the question.

>

>Carla Dionne

>mailto:cdionne@...

>http://www.uterinefibroids.com

>member, /list/uterinefibroids

>

>

>

>

>------------------------------ message 851 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=851

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>

>Date: Fri, 03 Sep 1999 10:19:31 PDT

>Mime-Version: 1.0

>Subject: Uterine Fibroid Embolization

>Mime-Version: 1.0

>Content-Type: text/plain; format=flowed

>Content-Transfer-Encoding: 7bit

>

>Hello Everyone:

>

>I am an Interventional Radiologist with 14 years of experience.

>I practice in Rocky Mount, North Carolina, a small city in the eastern part

>of the state.

>

>Last June (1999), I performed my first uterine fibroid embolization.

>My fifth is scheduled for next week. Technically my procedures have been

>successful. Clinical results have so far been encouraging.

>

>I presented this new procedure to many local gynecologists,

>and have received a fair reception. As you would expect there has been

>a mix of interest and skepticism.

>

>I have " listened in " to the group over the last month. Listening to

>your concerns/ questions has helped me a great deal to anticipate my

>patients concerns.

>

>Does the group have any suggestions as to how to promote embolization as an

>alternative? At least one gynecologist has agreed to help promote the

>procedure.

>

>Thank You,

>

>G. Tillman ,MD

>tillmanbailey@...

>

>______________________________________________________

>

>

>------------------------------ message 852 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=852

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>From: Mmollyz@...

>Date: Fri, 3 Sep 1999 16:50:57 EDT

>MIME-Version: 1.0

>Subject: Re: Uterine Fibroid Embolization

>Mime-Version: 1.0

>Content-Type: text/plain; charset= " us-ascii "

>Content-Transfer-Encoding: 7bit

>

>Dear Dr. -

>As far as promoting UAE, I think that women need to first be educated about

>fibroids: how common they are, how hysterectomy is really overkill, etc. A

>surprising number of even well-educated women still lay their health in the

>arms of their doctors. If a woman like Oprah was to do a segment on the

>abuse of hysterectomy I think there might be a call to arms. I mean, why

cut

>out a body part when you can keep it.......Barbara in San Diego

>

>

>------------------------------ message 853 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=853

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>Date: Fri, 03 Sep 1999 17:04:04 -0400

>

>Mime-Version: 1.0

>Subject: Re: red meat/fibroids

>Mime-Version: 1.0

>Content-Type: text/plain; charset=us-ascii

>Content-Transfer-Encoding: 7bit

>

>On the other hand, I consume almost no dairy or red meat, although I did

until approximately 2 1/2 years ago. The dietary change coincides almost

completely with my major bleeding problems [they started approximately one

month prior to the dietary change].

>I have lost ~60 lbs, again - coincidental with the start of bleeding

problems (Don't I also recall that obesity is connected with additional

estrogen that feeds fibroids??)

>

>If the connections are real, just think how bad I'd be if I hadn't changed

my eating habits!

>

>

>--

>

>

>>

>>Dr. Lee writes about it in his book and I found the connection more than

>>coincidental when giving up red meat and dairy products brought my excessive

>>bleeding from fibroids under reasonable control. (I don't have submucosal

>>fibroids though

>

>

>Visit FindLaw at http://www.findlaw.com for free case law, web guide, and

legal news, and get your free @JusticeMail.com address at

http://www.justicemail.com

>

>

>------------------------------ message 854 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=854

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>Date: Fri, 03 Sep 1999 16:38:14 -0700

>From: .Reeves@...

>In-Reply-To:

>Subject: Re: Uterine Fibroid Embolization

>Mime-Version: 1.0

>Content-Type: text/plain

>Content-Transfer-Encoding: 7bit

>

>The change has to occur within the gynecological community. A good

>portion of the women I am aware of who are seeking/have had UAE have

>discovered the procedure on our own. The information is available to

>the general public, for anyone resourceful enough to use the internet

>and is becoming more available in popular publications.

>

>Even when the patients are informed, it is often a slow process to get

>the gynecologist on board - and, heaven forbid, the gp who must

>ultimately recommend the procedure since it is one the gynecologist

>can't directly perform.

>

>My suggestion is for IR's to contact gynecologists who are associated

>with non-profit or salary based practices (i.e. no income directly lost

>if someone other than the gynecologist performs the procedure) and

>educate them about the procedure. If they become convinced of its

>efficacy, and carry it to the wider gynecological community it has a

>better chance of taking off. It's hard to argue you ought to be

>performing a hysterectomy when your peers who have no monetary motive

>to promote one procedure over another say it's unnecessary.

>

>This procedure is unlike any other I've encountered - it often involves

>decisions by physicians in three different specialties (Gyn, IR, GP/FM)

>in order to get one procedure approved. Until the widespread success

>of the procedure itself makes any argument against it futile, I suspect

>the road to obtaining a UAE will remain difficult.

>

>original article:/group/uterinefibroids/?start=851

>> Hello Everyone:

>>

>> I am an Interventional Radiologist with 14 years of experience.

>> <snip>

>> I presented this new procedure to many local gynecologists,

>> and have received a fair reception. As you would expect there has been

>> a mix of interest and skepticism.

>> <snip>

>>

>> Does the group have any suggestions as to how to promote embolization

>as an

>> alternative? At least one gynecologist has agreed to help promote the

>> procedure.

>>

>> Thank You,

>>

>> G. Tillman ,MD

>> tillmanbailey@...

>>

>> ______________________________________________________

>

>

>

>------------------------------ message 855 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=855

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>Date: Fri, 03 Sep 1999 16:59:53 -0700

>From: .Reeves@...

>In-Reply-To: <002701bef61a$11b7e6c0$7a92b2d1@cdionne>

>Subject: Re: study

>Mime-Version: 1.0

>Content-Type: text/plain

>Content-Transfer-Encoding: 7bit

>

>What is the point of a RCT in this case? They are often done when the

>treatments are indistinguishable of the surface, and the results

>substantially subjective in order to assign individuals in a double

>blind studies. Neither the doctor nor the patient knows which

>treatment anyone is receiving, so subjective expected results and side

>effects can be determined without expectation bias. (The tamoxifen

>studies for premenopausal women at high risk for breast cancer is one

>example.)

>

>It seems to me that at this point, randomization is not necessary and

>wouldn't be particularly helpful. There isn't the possibility of a

>double blind study and there are enough objective characteristics

>(size, location, number of fibroids, amount of bleeding, etc.) that you

>could pair/group similar individuals for accurate objective evaluation

>of results, which would be measured using the same objective standards

>as were used to pair the individuals/groups initially.

>

>The only reason I could see for randomization is if there were not

>enough women interested in one or the other treatment option to gather

>a comparison group. If that is the case, it does strike me as a bit

>coercive - you can have the option of a UAE but only if you're willing

>to risk undergoing a myo first (or vice versa)

>

>> A doctor that I know has just received grant monies for doing a RCT

>> (randomized controlled trial) and is trying to decide what kind of

>control

>> group to compare UFE to.

>

>> Carla Dionne

>>

>

>

>

>------------------------------ message 856 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=856

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>

>Date: Fri, 3 Sep 1999 20:04:10 -0700

>MIME-Version: 1.0

>Subject: Re: study

>Mime-Version: 1.0

>Content-Type: text/plain; charset= " iso-8859-1 "

>Content-Transfer-Encoding: 7bit

>

>>The only reason I could see for randomization is if there were not

>>enough women interested in one or the other treatment option to gather

>>a comparison group. If that is the case, it does strike me as a bit

>>coercive - you can have the option of a UAE but only if you're willing

>>to risk undergoing a myo first (or vice versa)

>

>

>I was following you pretty good until I got to this " coercive "

>statement. How does a voluntary trial that people must pick up the phone

>and avail themselves personally of their own free will become " coercive " in

>your eyes? Certainly those same people could very well avail themselves of

>a specifically chosen procedure with the physician of their choice without

>ever entering a trial, could they not?

>

>I suppose you could argue that insurance companies that are denying coverage

>for this procedure might make desperate women enter just such a trial to

>*potentially* get the procedure.

>

>But the gyn " standard of care " for uterine fibroids is hysterectomy. And

>surely that IS covered by their insurance.

>

>I've read email where women HAVE allowed the treatment decision for their

>uterine fibroids to be made entirely by what is covered by their insurance.

>To them, UFE is a " nice to have " not a " got to have " when the dollars and

>cents boil down to the reality of what a person can afford, care to take the

>time to push their insurance for payout, or even trouble themselves with

>thinking about. Quite frankly, the 10% plus $500 annual deductible has been

>a bit of a hardship for me. Especially when the bills started stacking up.

>. .eventually surpassing $50k. And I didn't have any trouble at all with

>insurance coverage. Just with paying " my share " of a gargantuan bill. I

>can't imagine my making this choice if I were any less capable, financially,

>of being able to pay my way out of this paper bag. It simply wouldn't be an

>option and I would continue suffering with my fibroids. And that would be

>MY choice when others would go ahead and have a hysterectomy.

>

>Life sucks and reality is what it is. UFE is not the only procedure that

>some insurance policies do not cover. Many, many people are barely hanging

>on to the minimal care that they receive based on what is covered under

>their policies for a variety of conditions. Some people never fill medical

>prescriptions because they can't afford to. I know this is way off track

>here, but I'm truly stuggling with trying to find a connection to what makes

>a volunteer act " coercive " .

>

>Ability to afford the treatment option of choice is the only angle that I

>could come up with in terms of a RCT being deemed " coercive " . Did you have

>something else in mind? I feel like maybe I'm " missing the point " entirely

>here. Medicine is either a stab in the dark and " your guess is as good as

>mine " OR it's based on science and, hopefully, evidence. Just how DO we go

>from basing treatments on " guesses " to basing them on " science " ? How do you

>cross that bridge without somebody becoming the guinea pig?

>

>The closest I can get to what you are trying to say about an RCT being

> " coercive " has to do with my own experience of sexual dysfunction post UFE.

>Uterine contractions are gone. Lovely, wonderful internal, cervical orgasms

>are gone. I was given the opportunity to join the Viagra study in Boston.

>I read the protocol. I turned it down. It wasn't something that I,

>personally, was comfortable with doing. My choice. I had the opportunity

>of a potentially helpful solution and turned it down in lieu of what?

>Retaining the status quo. Did I deem their study requirements " coercive " ?

>No. Just not something I cared to participate in at this time.

>

>Okay. This babbling brook needs to get some exercise and see if there are

>any REAL brain cells left from today's busy workload. I've just re-read

>this email and feel that I've inflicted y'all with a bunch of unnecessary

>gibberish. Sorry. I'll come back in a couple of days when I'm not so tired

>and can think more clearly.

>

>Carla Dionne

>mailto:cdionne@...

>http://www.uterinefibroids.com

>member, /list/uterinefibroids

>

>

>

>------------------------------ message 857 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=857

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>From: Flalabtec@...

>Date: Fri, 3 Sep 1999 23:50:32 EDT

>MIME-Version: 1.0

>Subject: Re: red meat/fibroids

>Mime-Version: 1.0

>Content-Type: text/plain; charset= " us-ascii "

>Content-Transfer-Encoding: 7bit

>

>,

>I can relate almost to the letter! Giving up red meat, dairy and the use of

>progesterone cream has really changed things for me. I wonder where I would

>be now if I hadn't done this one year ago also! Dr. Lee's book changed my

>life so much and I am so grateful.

>Beth

>

>

>------------------------------ message 858 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=858

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>Date: Sat, 04 Sep 1999 05:49:49 -0400

>

>In-Reply-To:

>Mime-Version: 1.0

>Subject: Re: Uterine Fibroid Embolization

>Mime-Version: 1.0

>Content-Type: text/plain; charset= " us-ascii "

>Content-Transfer-Encoding: 7bit

>

>Dear Dr. ,

>

>I would suggest contacting the hospital's public relations department if

>they have one and suggest getting the message out to the general public

>that your hospital does this procedure or contact a local paper about a

story.

>

>If you have noticed, embolization has featured on some recent news programs

>as well as articles in women's magazines. But I'm sure women who have

>wanted it done have not thought it was done locally. If you have been

>reading messages from the group. You will realize that most of the women

>sought out embolization rather than the gyn suggesting it, so it would seem

>logical to get the info out there so the women can ask their gyn about the

>procedure locally. Or I would assume they could contact you and you and

>their gyn could work something out.

>

>Just a suggestion - publicity for this procedure, I think, would be a good

>thing.

>

>heidi

>>Does the group have any suggestions as to how to promote embolization as an

>>alternative? At least one gynecologist has agreed to help promote the

>>procedure.

>>

>>Thank You,

>>

>>G. Tillman ,MD

>>tillmanbailey@...

>>

>>______________________________________________________

>>

>>------------------------------------------------------------------------

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>>

>>

>>

>>

>

>

>

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[Guest guest]

Carla--

I read your long post about clinical trials, coercion, and your own

experience. I agree with much of what you say. Personally, I decided

against UAE because it is too experimental, and as someone who took Lupron

with the usual devastating results, I am unwilling to be experimental. In

this case clinical trials are a must, exactly because women like me need

more information. The trick is to keep women from becoming guinea pigs by

doing as much as possible beforehand to ensure the safety and efficacy of a

procedure.

What I'm responding to is your revelation of lack of optimal sexual

functioning after UAE. I'm interested because I'm trying to figure out what

the loss of my uterus (only the uterus--I've got everything else) has done

to my sexual functioning. I'm beginning to wonder if all procedures

unvolving the uterus--from UAE and myo to complete removal--affect sexus

functioning. Why isn't anyone studying THIS?

In my case, I lack feeling above the pubic area. Part of this is obviously

because my lower abdomen is numb from the incision. But something seems to

be missing, and I can't figure out what it is. I'd heard about uterine

contractions but never felt that I'd had them myself. Now I wonder. My

uterus was VERY messed up, and perhaps I underestimated its response. In

any case, I'd like to know more about what happens to us when the uterus is

removed or significantly altered.

In your case, could it have to do with blood flow? There is one lower

artery that supplies blood to the lower pelvic area, including I imagine

cervix and vagina. It's important that this artery not be tampered with. A

very well-known surgeon and researcher discusses this issue in an article

on types of hysterectomy (I'd need to look that reference up). Could this

artery have been one affected by your UAE?

In my case, I think I have to wait and see what happens in a few months.

I'm menopausal anyway, and Triest does wonders for me--I have a better

response with it than without it. But I'm curious to see if something still

feels lacking as time goes by in terms of sexual response--which I

certainly still have. Sex is actually better because I'm not in pain. But

it is different, and I'd like not only to find out other women's

experiences but find out why the medical community isn't researching this

area. Seems to me it should be of great interest to men and women alike.

Regards,

At 10:50 AM 9/4/99 -0000, you wrote:

>eGroups Daily Digest: uterinefibroids has 9 new messages.

>Click here http://www.eGroups.com/list/uterinefibroids/?start=850 to read

them.

>

>-----------------------------------------------------------------

>850. Carla Dionne Re: study

>851. Tillman Uterine Fibroid Embolization

>852. Mmollyz@... Re: Uterine Fibroid Embolization

>853. Reeves Re: red meat/fibroids

>854. .Reeves@... Re: Uterine Fibroid Embolization

>855. .Reeves@... Re: study

>856. Carla Dionne Re: study

>857. Flalabtec@... Re: red meat/fibroids

>858. heidi hormel Re: Uterine Fibroid Embolization

>-----------------------------------------------------------------

>

>------------------------------ message 850 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=850

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>

>Date: Fri, 3 Sep 1999 07:39:01 -0700

>MIME-Version: 1.0

>Subject: Re: study

>Mime-Version: 1.0

>Content-Type: text/plain; charset= " iso-8859-1 "

>Content-Transfer-Encoding: 7bit

>

>> Thank you for your reply. I believe the situation for women, with

>>respect to medical care, is quite sad and that women are made to suffer

>from

>>it in so many ways. I am very sensitive to the moral and ethical

>>implications of much of what happens in the medical community. I wish that

>>we as a society took more care to respect the dignity of life and the value

>>of each person (especially women). I still believe that there are more

>>humane ways to obtain a good answer to these questions. I don't think you

>>would have posed this question had there not been an ethical dilemma in it.

>

>

>Tish,

>

>I didn't pose the question on clinical trials with myo/UFE because of any

>ethical concerns I have. I personally don't see any ethical dilemma in this

>particular kind of study as both options -- myo and UFE -- are good ones and

>either would have been acceptable to me. But I did want to know if others

>would feel differently and, perhaps, find ethical dilemma in the study.

>Your answer clearly told us that you did and I dare say that there are

>probably others who would agree with you just as there were others that

>agree with me. Neither of us are " wrong " for thinking or feeling the way we

>do. More than likely, we simply bring a different set of " cards " to the

>table for coming to our differing conclusions.

>

>A doctor that I know has just received grant monies for doing a RCT

>(randomized controlled trial) and is trying to decide what kind of control

>group to compare UFE to. Right now, there are DOZENS of studies going on

>across the country comparing UFE to myo, hyst, Lupron, etc. I think I've

>convinced him that Lupron (or ANY drug therapy) is NOT the way to go

>(something that pharmaceuticals push and could mean even more money for

>studies) and now he's looking at other options. As a physician, he is

>sincerely interested in finding out whether or not women would participate

>in this kind of trial (randomized myo/UFE). He did not want to set up his

>protocol in a vacuum, so to speak, as he cares about his patients a great

>deal and does not want to hurt anyone. Your response, which was very real,

>and Leonie's response probably represents the 2 ends of the spectrum. When

>doctors embark down roads of experimentation, I think they need to know how

>their travels are going to be received. Which is the real reason I posed

>the question.

>

>Carla Dionne

>mailto:cdionne@...

>http://www.uterinefibroids.com

>member, /list/uterinefibroids

>

>

>

>

>------------------------------ message 851 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=851

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>

>Date: Fri, 03 Sep 1999 10:19:31 PDT

>Mime-Version: 1.0

>Subject: Uterine Fibroid Embolization

>Mime-Version: 1.0

>Content-Type: text/plain; format=flowed

>Content-Transfer-Encoding: 7bit

>

>Hello Everyone:

>

>I am an Interventional Radiologist with 14 years of experience.

>I practice in Rocky Mount, North Carolina, a small city in the eastern part

>of the state.

>

>Last June (1999), I performed my first uterine fibroid embolization.

>My fifth is scheduled for next week. Technically my procedures have been

>successful. Clinical results have so far been encouraging.

>

>I presented this new procedure to many local gynecologists,

>and have received a fair reception. As you would expect there has been

>a mix of interest and skepticism.

>

>I have " listened in " to the group over the last month. Listening to

>your concerns/ questions has helped me a great deal to anticipate my

>patients concerns.

>

>Does the group have any suggestions as to how to promote embolization as an

>alternative? At least one gynecologist has agreed to help promote the

>procedure.

>

>Thank You,

>

>G. Tillman ,MD

>tillmanbailey@...

>

>______________________________________________________

>

>

>------------------------------ message 852 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=852

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>From: Mmollyz@...

>Date: Fri, 3 Sep 1999 16:50:57 EDT

>MIME-Version: 1.0

>Subject: Re: Uterine Fibroid Embolization

>Mime-Version: 1.0

>Content-Type: text/plain; charset= " us-ascii "

>Content-Transfer-Encoding: 7bit

>

>Dear Dr. -

>As far as promoting UAE, I think that women need to first be educated about

>fibroids: how common they are, how hysterectomy is really overkill, etc. A

>surprising number of even well-educated women still lay their health in the

>arms of their doctors. If a woman like Oprah was to do a segment on the

>abuse of hysterectomy I think there might be a call to arms. I mean, why

cut

>out a body part when you can keep it.......Barbara in San Diego

>

>

>------------------------------ message 853 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=853

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>Date: Fri, 03 Sep 1999 17:04:04 -0400

>

>Mime-Version: 1.0

>Subject: Re: red meat/fibroids

>Mime-Version: 1.0

>Content-Type: text/plain; charset=us-ascii

>Content-Transfer-Encoding: 7bit

>

>On the other hand, I consume almost no dairy or red meat, although I did

until approximately 2 1/2 years ago. The dietary change coincides almost

completely with my major bleeding problems [they started approximately one

month prior to the dietary change].

>I have lost ~60 lbs, again - coincidental with the start of bleeding

problems (Don't I also recall that obesity is connected with additional

estrogen that feeds fibroids??)

>

>If the connections are real, just think how bad I'd be if I hadn't changed

my eating habits!

>

>

>--

>

>

>>

>>Dr. Lee writes about it in his book and I found the connection more than

>>coincidental when giving up red meat and dairy products brought my excessive

>>bleeding from fibroids under reasonable control. (I don't have submucosal

>>fibroids though

>

>

>Visit FindLaw at http://www.findlaw.com for free case law, web guide, and

legal news, and get your free @JusticeMail.com address at

http://www.justicemail.com

>

>

>------------------------------ message 854 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=854

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>Date: Fri, 03 Sep 1999 16:38:14 -0700

>From: .Reeves@...

>In-Reply-To:

>Subject: Re: Uterine Fibroid Embolization

>Mime-Version: 1.0

>Content-Type: text/plain

>Content-Transfer-Encoding: 7bit

>

>The change has to occur within the gynecological community. A good

>portion of the women I am aware of who are seeking/have had UAE have

>discovered the procedure on our own. The information is available to

>the general public, for anyone resourceful enough to use the internet

>and is becoming more available in popular publications.

>

>Even when the patients are informed, it is often a slow process to get

>the gynecologist on board - and, heaven forbid, the gp who must

>ultimately recommend the procedure since it is one the gynecologist

>can't directly perform.

>

>My suggestion is for IR's to contact gynecologists who are associated

>with non-profit or salary based practices (i.e. no income directly lost

>if someone other than the gynecologist performs the procedure) and

>educate them about the procedure. If they become convinced of its

>efficacy, and carry it to the wider gynecological community it has a

>better chance of taking off. It's hard to argue you ought to be

>performing a hysterectomy when your peers who have no monetary motive

>to promote one procedure over another say it's unnecessary.

>

>This procedure is unlike any other I've encountered - it often involves

>decisions by physicians in three different specialties (Gyn, IR, GP/FM)

>in order to get one procedure approved. Until the widespread success

>of the procedure itself makes any argument against it futile, I suspect

>the road to obtaining a UAE will remain difficult.

>

>original article:/group/uterinefibroids/?start=851

>> Hello Everyone:

>>

>> I am an Interventional Radiologist with 14 years of experience.

>> <snip>

>> I presented this new procedure to many local gynecologists,

>> and have received a fair reception. As you would expect there has been

>> a mix of interest and skepticism.

>> <snip>

>>

>> Does the group have any suggestions as to how to promote embolization

>as an

>> alternative? At least one gynecologist has agreed to help promote the

>> procedure.

>>

>> Thank You,

>>

>> G. Tillman ,MD

>> tillmanbailey@...

>>

>> ______________________________________________________

>

>

>

>------------------------------ message 855 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=855

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>Date: Fri, 03 Sep 1999 16:59:53 -0700

>From: .Reeves@...

>In-Reply-To: <002701bef61a$11b7e6c0$7a92b2d1@cdionne>

>Subject: Re: study

>Mime-Version: 1.0

>Content-Type: text/plain

>Content-Transfer-Encoding: 7bit

>

>What is the point of a RCT in this case? They are often done when the

>treatments are indistinguishable of the surface, and the results

>substantially subjective in order to assign individuals in a double

>blind studies. Neither the doctor nor the patient knows which

>treatment anyone is receiving, so subjective expected results and side

>effects can be determined without expectation bias. (The tamoxifen

>studies for premenopausal women at high risk for breast cancer is one

>example.)

>

>It seems to me that at this point, randomization is not necessary and

>wouldn't be particularly helpful. There isn't the possibility of a

>double blind study and there are enough objective characteristics

>(size, location, number of fibroids, amount of bleeding, etc.) that you

>could pair/group similar individuals for accurate objective evaluation

>of results, which would be measured using the same objective standards

>as were used to pair the individuals/groups initially.

>

>The only reason I could see for randomization is if there were not

>enough women interested in one or the other treatment option to gather

>a comparison group. If that is the case, it does strike me as a bit

>coercive - you can have the option of a UAE but only if you're willing

>to risk undergoing a myo first (or vice versa)

>

>> A doctor that I know has just received grant monies for doing a RCT

>> (randomized controlled trial) and is trying to decide what kind of

>control

>> group to compare UFE to.

>

>> Carla Dionne

>>

>

>

>

>------------------------------ message 856 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=856

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>

>Date: Fri, 3 Sep 1999 20:04:10 -0700

>MIME-Version: 1.0

>Subject: Re: study

>Mime-Version: 1.0

>Content-Type: text/plain; charset= " iso-8859-1 "

>Content-Transfer-Encoding: 7bit

>

>>The only reason I could see for randomization is if there were not

>>enough women interested in one or the other treatment option to gather

>>a comparison group. If that is the case, it does strike me as a bit

>>coercive - you can have the option of a UAE but only if you're willing

>>to risk undergoing a myo first (or vice versa)

>

>

>I was following you pretty good until I got to this " coercive "

>statement. How does a voluntary trial that people must pick up the phone

>and avail themselves personally of their own free will become " coercive " in

>your eyes? Certainly those same people could very well avail themselves of

>a specifically chosen procedure with the physician of their choice without

>ever entering a trial, could they not?

>

>I suppose you could argue that insurance companies that are denying coverage

>for this procedure might make desperate women enter just such a trial to

>*potentially* get the procedure.

>

>But the gyn " standard of care " for uterine fibroids is hysterectomy. And

>surely that IS covered by their insurance.

>

>I've read email where women HAVE allowed the treatment decision for their

>uterine fibroids to be made entirely by what is covered by their insurance.

>To them, UFE is a " nice to have " not a " got to have " when the dollars and

>cents boil down to the reality of what a person can afford, care to take the

>time to push their insurance for payout, or even trouble themselves with

>thinking about. Quite frankly, the 10% plus $500 annual deductible has been

>a bit of a hardship for me. Especially when the bills started stacking up.

>. .eventually surpassing $50k. And I didn't have any trouble at all with

>insurance coverage. Just with paying " my share " of a gargantuan bill. I

>can't imagine my making this choice if I were any less capable, financially,

>of being able to pay my way out of this paper bag. It simply wouldn't be an

>option and I would continue suffering with my fibroids. And that would be

>MY choice when others would go ahead and have a hysterectomy.

>

>Life sucks and reality is what it is. UFE is not the only procedure that

>some insurance policies do not cover. Many, many people are barely hanging

>on to the minimal care that they receive based on what is covered under

>their policies for a variety of conditions. Some people never fill medical

>prescriptions because they can't afford to. I know this is way off track

>here, but I'm truly stuggling with trying to find a connection to what makes

>a volunteer act " coercive " .

>

>Ability to afford the treatment option of choice is the only angle that I

>could come up with in terms of a RCT being deemed " coercive " . Did you have

>something else in mind? I feel like maybe I'm " missing the point " entirely

>here. Medicine is either a stab in the dark and " your guess is as good as

>mine " OR it's based on science and, hopefully, evidence. Just how DO we go

>from basing treatments on " guesses " to basing them on " science " ? How do you

>cross that bridge without somebody becoming the guinea pig?

>

>The closest I can get to what you are trying to say about an RCT being

> " coercive " has to do with my own experience of sexual dysfunction post UFE.

>Uterine contractions are gone. Lovely, wonderful internal, cervical orgasms

>are gone. I was given the opportunity to join the Viagra study in Boston.

>I read the protocol. I turned it down. It wasn't something that I,

>personally, was comfortable with doing. My choice. I had the opportunity

>of a potentially helpful solution and turned it down in lieu of what?

>Retaining the status quo. Did I deem their study requirements " coercive " ?

>No. Just not something I cared to participate in at this time.

>

>Okay. This babbling brook needs to get some exercise and see if there are

>any REAL brain cells left from today's busy workload. I've just re-read

>this email and feel that I've inflicted y'all with a bunch of unnecessary

>gibberish. Sorry. I'll come back in a couple of days when I'm not so tired

>and can think more clearly.

>

>Carla Dionne

>mailto:cdionne@...

>http://www.uterinefibroids.com

>member, /list/uterinefibroids

>

>

>

>------------------------------ message 857 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=857

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>From: Flalabtec@...

>Date: Fri, 3 Sep 1999 23:50:32 EDT

>MIME-Version: 1.0

>Subject: Re: red meat/fibroids

>Mime-Version: 1.0

>Content-Type: text/plain; charset= " us-ascii "

>Content-Transfer-Encoding: 7bit

>

>,

>I can relate almost to the letter! Giving up red meat, dairy and the use of

>progesterone cream has really changed things for me. I wonder where I would

>be now if I hadn't done this one year ago also! Dr. Lee's book changed my

>life so much and I am so grateful.

>Beth

>

>

>------------------------------ message 858 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=858

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>Date: Sat, 04 Sep 1999 05:49:49 -0400

>

>In-Reply-To:

>Mime-Version: 1.0

>Subject: Re: Uterine Fibroid Embolization

>Mime-Version: 1.0

>Content-Type: text/plain; charset= " us-ascii "

>Content-Transfer-Encoding: 7bit

>

>Dear Dr. ,

>

>I would suggest contacting the hospital's public relations department if

>they have one and suggest getting the message out to the general public

>that your hospital does this procedure or contact a local paper about a

story.

>

>If you have noticed, embolization has featured on some recent news programs

>as well as articles in women's magazines. But I'm sure women who have

>wanted it done have not thought it was done locally. If you have been

>reading messages from the group. You will realize that most of the women

>sought out embolization rather than the gyn suggesting it, so it would seem

>logical to get the info out there so the women can ask their gyn about the

>procedure locally. Or I would assume they could contact you and you and

>their gyn could work something out.

>

>Just a suggestion - publicity for this procedure, I think, would be a good

>thing.

>

>heidi

>>Does the group have any suggestions as to how to promote embolization as an

>>alternative? At least one gynecologist has agreed to help promote the

>>procedure.

>>

>>Thank You,

>>

>>G. Tillman ,MD

>>tillmanbailey@...

>>

>>______________________________________________________

>>

>>------------------------------------------------------------------------

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>

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[Guest guest]

Carla--

I read your long post about clinical trials, coercion, and your own

experience. I agree with much of what you say. Personally, I decided

against UAE because it is too experimental, and as someone who took Lupron

with the usual devastating results, I am unwilling to be experimental. In

this case clinical trials are a must, exactly because women like me need

more information. The trick is to keep women from becoming guinea pigs by

doing as much as possible beforehand to ensure the safety and efficacy of a

procedure.

What I'm responding to is your revelation of lack of optimal sexual

functioning after UAE. I'm interested because I'm trying to figure out what

the loss of my uterus (only the uterus--I've got everything else) has done

to my sexual functioning. I'm beginning to wonder if all procedures

unvolving the uterus--from UAE and myo to complete removal--affect sexus

functioning. Why isn't anyone studying THIS?

In my case, I lack feeling above the pubic area. Part of this is obviously

because my lower abdomen is numb from the incision. But something seems to

be missing, and I can't figure out what it is. I'd heard about uterine

contractions but never felt that I'd had them myself. Now I wonder. My

uterus was VERY messed up, and perhaps I underestimated its response. In

any case, I'd like to know more about what happens to us when the uterus is

removed or significantly altered.

In your case, could it have to do with blood flow? There is one lower

artery that supplies blood to the lower pelvic area, including I imagine

cervix and vagina. It's important that this artery not be tampered with. A

very well-known surgeon and researcher discusses this issue in an article

on types of hysterectomy (I'd need to look that reference up). Could this

artery have been one affected by your UAE?

In my case, I think I have to wait and see what happens in a few months.

I'm menopausal anyway, and Triest does wonders for me--I have a better

response with it than without it. But I'm curious to see if something still

feels lacking as time goes by in terms of sexual response--which I

certainly still have. Sex is actually better because I'm not in pain. But

it is different, and I'd like not only to find out other women's

experiences but find out why the medical community isn't researching this

area. Seems to me it should be of great interest to men and women alike.

Regards,

At 10:50 AM 9/4/99 -0000, you wrote:

>eGroups Daily Digest: uterinefibroids has 9 new messages.

>Click here http://www.eGroups.com/list/uterinefibroids/?start=850 to read

them.

>

>-----------------------------------------------------------------

>850. Carla Dionne Re: study

>851. Tillman Uterine Fibroid Embolization

>852. Mmollyz@... Re: Uterine Fibroid Embolization

>853. Reeves Re: red meat/fibroids

>854. .Reeves@... Re: Uterine Fibroid Embolization

>855. .Reeves@... Re: study

>856. Carla Dionne Re: study

>857. Flalabtec@... Re: red meat/fibroids

>858. heidi hormel Re: Uterine Fibroid Embolization

>-----------------------------------------------------------------

>

>------------------------------ message 850 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=850

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>

>Date: Fri, 3 Sep 1999 07:39:01 -0700

>MIME-Version: 1.0

>Subject: Re: study

>Mime-Version: 1.0

>Content-Type: text/plain; charset= " iso-8859-1 "

>Content-Transfer-Encoding: 7bit

>

>> Thank you for your reply. I believe the situation for women, with

>>respect to medical care, is quite sad and that women are made to suffer

>from

>>it in so many ways. I am very sensitive to the moral and ethical

>>implications of much of what happens in the medical community. I wish that

>>we as a society took more care to respect the dignity of life and the value

>>of each person (especially women). I still believe that there are more

>>humane ways to obtain a good answer to these questions. I don't think you

>>would have posed this question had there not been an ethical dilemma in it.

>

>

>Tish,

>

>I didn't pose the question on clinical trials with myo/UFE because of any

>ethical concerns I have. I personally don't see any ethical dilemma in this

>particular kind of study as both options -- myo and UFE -- are good ones and

>either would have been acceptable to me. But I did want to know if others

>would feel differently and, perhaps, find ethical dilemma in the study.

>Your answer clearly told us that you did and I dare say that there are

>probably others who would agree with you just as there were others that

>agree with me. Neither of us are " wrong " for thinking or feeling the way we

>do. More than likely, we simply bring a different set of " cards " to the

>table for coming to our differing conclusions.

>

>A doctor that I know has just received grant monies for doing a RCT

>(randomized controlled trial) and is trying to decide what kind of control

>group to compare UFE to. Right now, there are DOZENS of studies going on

>across the country comparing UFE to myo, hyst, Lupron, etc. I think I've

>convinced him that Lupron (or ANY drug therapy) is NOT the way to go

>(something that pharmaceuticals push and could mean even more money for

>studies) and now he's looking at other options. As a physician, he is

>sincerely interested in finding out whether or not women would participate

>in this kind of trial (randomized myo/UFE). He did not want to set up his

>protocol in a vacuum, so to speak, as he cares about his patients a great

>deal and does not want to hurt anyone. Your response, which was very real,

>and Leonie's response probably represents the 2 ends of the spectrum. When

>doctors embark down roads of experimentation, I think they need to know how

>their travels are going to be received. Which is the real reason I posed

>the question.

>

>Carla Dionne

>mailto:cdionne@...

>http://www.uterinefibroids.com

>member, /list/uterinefibroids

>

>

>

>

>------------------------------ message 851 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=851

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>

>Date: Fri, 03 Sep 1999 10:19:31 PDT

>Mime-Version: 1.0

>Subject: Uterine Fibroid Embolization

>Mime-Version: 1.0

>Content-Type: text/plain; format=flowed

>Content-Transfer-Encoding: 7bit

>

>Hello Everyone:

>

>I am an Interventional Radiologist with 14 years of experience.

>I practice in Rocky Mount, North Carolina, a small city in the eastern part

>of the state.

>

>Last June (1999), I performed my first uterine fibroid embolization.

>My fifth is scheduled for next week. Technically my procedures have been

>successful. Clinical results have so far been encouraging.

>

>I presented this new procedure to many local gynecologists,

>and have received a fair reception. As you would expect there has been

>a mix of interest and skepticism.

>

>I have " listened in " to the group over the last month. Listening to

>your concerns/ questions has helped me a great deal to anticipate my

>patients concerns.

>

>Does the group have any suggestions as to how to promote embolization as an

>alternative? At least one gynecologist has agreed to help promote the

>procedure.

>

>Thank You,

>

>G. Tillman ,MD

>tillmanbailey@...

>

>______________________________________________________

>

>

>------------------------------ message 852 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=852

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>From: Mmollyz@...

>Date: Fri, 3 Sep 1999 16:50:57 EDT

>MIME-Version: 1.0

>Subject: Re: Uterine Fibroid Embolization

>Mime-Version: 1.0

>Content-Type: text/plain; charset= " us-ascii "

>Content-Transfer-Encoding: 7bit

>

>Dear Dr. -

>As far as promoting UAE, I think that women need to first be educated about

>fibroids: how common they are, how hysterectomy is really overkill, etc. A

>surprising number of even well-educated women still lay their health in the

>arms of their doctors. If a woman like Oprah was to do a segment on the

>abuse of hysterectomy I think there might be a call to arms. I mean, why

cut

>out a body part when you can keep it.......Barbara in San Diego

>

>

>------------------------------ message 853 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=853

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>Date: Fri, 03 Sep 1999 17:04:04 -0400

>

>Mime-Version: 1.0

>Subject: Re: red meat/fibroids

>Mime-Version: 1.0

>Content-Type: text/plain; charset=us-ascii

>Content-Transfer-Encoding: 7bit

>

>On the other hand, I consume almost no dairy or red meat, although I did

until approximately 2 1/2 years ago. The dietary change coincides almost

completely with my major bleeding problems [they started approximately one

month prior to the dietary change].

>I have lost ~60 lbs, again - coincidental with the start of bleeding

problems (Don't I also recall that obesity is connected with additional

estrogen that feeds fibroids??)

>

>If the connections are real, just think how bad I'd be if I hadn't changed

my eating habits!

>

>

>--

>

>

>>

>>Dr. Lee writes about it in his book and I found the connection more than

>>coincidental when giving up red meat and dairy products brought my excessive

>>bleeding from fibroids under reasonable control. (I don't have submucosal

>>fibroids though

>

>

>Visit FindLaw at http://www.findlaw.com for free case law, web guide, and

legal news, and get your free @JusticeMail.com address at

http://www.justicemail.com

>

>

>------------------------------ message 854 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=854

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>Date: Fri, 03 Sep 1999 16:38:14 -0700

>From: .Reeves@...

>In-Reply-To:

>Subject: Re: Uterine Fibroid Embolization

>Mime-Version: 1.0

>Content-Type: text/plain

>Content-Transfer-Encoding: 7bit

>

>The change has to occur within the gynecological community. A good

>portion of the women I am aware of who are seeking/have had UAE have

>discovered the procedure on our own. The information is available to

>the general public, for anyone resourceful enough to use the internet

>and is becoming more available in popular publications.

>

>Even when the patients are informed, it is often a slow process to get

>the gynecologist on board - and, heaven forbid, the gp who must

>ultimately recommend the procedure since it is one the gynecologist

>can't directly perform.

>

>My suggestion is for IR's to contact gynecologists who are associated

>with non-profit or salary based practices (i.e. no income directly lost

>if someone other than the gynecologist performs the procedure) and

>educate them about the procedure. If they become convinced of its

>efficacy, and carry it to the wider gynecological community it has a

>better chance of taking off. It's hard to argue you ought to be

>performing a hysterectomy when your peers who have no monetary motive

>to promote one procedure over another say it's unnecessary.

>

>This procedure is unlike any other I've encountered - it often involves

>decisions by physicians in three different specialties (Gyn, IR, GP/FM)

>in order to get one procedure approved. Until the widespread success

>of the procedure itself makes any argument against it futile, I suspect

>the road to obtaining a UAE will remain difficult.

>

>original article:/group/uterinefibroids/?start=851

>> Hello Everyone:

>>

>> I am an Interventional Radiologist with 14 years of experience.

>> <snip>

>> I presented this new procedure to many local gynecologists,

>> and have received a fair reception. As you would expect there has been

>> a mix of interest and skepticism.

>> <snip>

>>

>> Does the group have any suggestions as to how to promote embolization

>as an

>> alternative? At least one gynecologist has agreed to help promote the

>> procedure.

>>

>> Thank You,

>>

>> G. Tillman ,MD

>> tillmanbailey@...

>>

>> ______________________________________________________

>

>

>

>------------------------------ message 855 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=855

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>Date: Fri, 03 Sep 1999 16:59:53 -0700

>From: .Reeves@...

>In-Reply-To: <002701bef61a$11b7e6c0$7a92b2d1@cdionne>

>Subject: Re: study

>Mime-Version: 1.0

>Content-Type: text/plain

>Content-Transfer-Encoding: 7bit

>

>What is the point of a RCT in this case? They are often done when the

>treatments are indistinguishable of the surface, and the results

>substantially subjective in order to assign individuals in a double

>blind studies. Neither the doctor nor the patient knows which

>treatment anyone is receiving, so subjective expected results and side

>effects can be determined without expectation bias. (The tamoxifen

>studies for premenopausal women at high risk for breast cancer is one

>example.)

>

>It seems to me that at this point, randomization is not necessary and

>wouldn't be particularly helpful. There isn't the possibility of a

>double blind study and there are enough objective characteristics

>(size, location, number of fibroids, amount of bleeding, etc.) that you

>could pair/group similar individuals for accurate objective evaluation

>of results, which would be measured using the same objective standards

>as were used to pair the individuals/groups initially.

>

>The only reason I could see for randomization is if there were not

>enough women interested in one or the other treatment option to gather

>a comparison group. If that is the case, it does strike me as a bit

>coercive - you can have the option of a UAE but only if you're willing

>to risk undergoing a myo first (or vice versa)

>

>> A doctor that I know has just received grant monies for doing a RCT

>> (randomized controlled trial) and is trying to decide what kind of

>control

>> group to compare UFE to.

>

>> Carla Dionne

>>

>

>

>

>------------------------------ message 856 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=856

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>

>Date: Fri, 3 Sep 1999 20:04:10 -0700

>MIME-Version: 1.0

>Subject: Re: study

>Mime-Version: 1.0

>Content-Type: text/plain; charset= " iso-8859-1 "

>Content-Transfer-Encoding: 7bit

>

>>The only reason I could see for randomization is if there were not

>>enough women interested in one or the other treatment option to gather

>>a comparison group. If that is the case, it does strike me as a bit

>>coercive - you can have the option of a UAE but only if you're willing

>>to risk undergoing a myo first (or vice versa)

>

>

>I was following you pretty good until I got to this " coercive "

>statement. How does a voluntary trial that people must pick up the phone

>and avail themselves personally of their own free will become " coercive " in

>your eyes? Certainly those same people could very well avail themselves of

>a specifically chosen procedure with the physician of their choice without

>ever entering a trial, could they not?

>

>I suppose you could argue that insurance companies that are denying coverage

>for this procedure might make desperate women enter just such a trial to

>*potentially* get the procedure.

>

>But the gyn " standard of care " for uterine fibroids is hysterectomy. And

>surely that IS covered by their insurance.

>

>I've read email where women HAVE allowed the treatment decision for their

>uterine fibroids to be made entirely by what is covered by their insurance.

>To them, UFE is a " nice to have " not a " got to have " when the dollars and

>cents boil down to the reality of what a person can afford, care to take the

>time to push their insurance for payout, or even trouble themselves with

>thinking about. Quite frankly, the 10% plus $500 annual deductible has been

>a bit of a hardship for me. Especially when the bills started stacking up.

>. .eventually surpassing $50k. And I didn't have any trouble at all with

>insurance coverage. Just with paying " my share " of a gargantuan bill. I

>can't imagine my making this choice if I were any less capable, financially,

>of being able to pay my way out of this paper bag. It simply wouldn't be an

>option and I would continue suffering with my fibroids. And that would be

>MY choice when others would go ahead and have a hysterectomy.

>

>Life sucks and reality is what it is. UFE is not the only procedure that

>some insurance policies do not cover. Many, many people are barely hanging

>on to the minimal care that they receive based on what is covered under

>their policies for a variety of conditions. Some people never fill medical

>prescriptions because they can't afford to. I know this is way off track

>here, but I'm truly stuggling with trying to find a connection to what makes

>a volunteer act " coercive " .

>

>Ability to afford the treatment option of choice is the only angle that I

>could come up with in terms of a RCT being deemed " coercive " . Did you have

>something else in mind? I feel like maybe I'm " missing the point " entirely

>here. Medicine is either a stab in the dark and " your guess is as good as

>mine " OR it's based on science and, hopefully, evidence. Just how DO we go

>from basing treatments on " guesses " to basing them on " science " ? How do you

>cross that bridge without somebody becoming the guinea pig?

>

>The closest I can get to what you are trying to say about an RCT being

> " coercive " has to do with my own experience of sexual dysfunction post UFE.

>Uterine contractions are gone. Lovely, wonderful internal, cervical orgasms

>are gone. I was given the opportunity to join the Viagra study in Boston.

>I read the protocol. I turned it down. It wasn't something that I,

>personally, was comfortable with doing. My choice. I had the opportunity

>of a potentially helpful solution and turned it down in lieu of what?

>Retaining the status quo. Did I deem their study requirements " coercive " ?

>No. Just not something I cared to participate in at this time.

>

>Okay. This babbling brook needs to get some exercise and see if there are

>any REAL brain cells left from today's busy workload. I've just re-read

>this email and feel that I've inflicted y'all with a bunch of unnecessary

>gibberish. Sorry. I'll come back in a couple of days when I'm not so tired

>and can think more clearly.

>

>Carla Dionne

>mailto:cdionne@...

>http://www.uterinefibroids.com

>member, /list/uterinefibroids

>

>

>

>------------------------------ message 857 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=857

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>From: Flalabtec@...

>Date: Fri, 3 Sep 1999 23:50:32 EDT

>MIME-Version: 1.0

>Subject: Re: red meat/fibroids

>Mime-Version: 1.0

>Content-Type: text/plain; charset= " us-ascii "

>Content-Transfer-Encoding: 7bit

>

>,

>I can relate almost to the letter! Giving up red meat, dairy and the use of

>progesterone cream has really changed things for me. I wonder where I would

>be now if I hadn't done this one year ago also! Dr. Lee's book changed my

>life so much and I am so grateful.

>Beth

>

>

>------------------------------ message 858 ------------------------------

>http://www.eGroups.com/list/uterinefibroids/?start=858

>

>X-Mailing-List: uterinefibroidsegroups

>X-URL: /list/uterinefibroids/

>Date: Sat, 04 Sep 1999 05:49:49 -0400

>

>In-Reply-To:

>Mime-Version: 1.0

>Subject: Re: Uterine Fibroid Embolization

>Mime-Version: 1.0

>Content-Type: text/plain; charset= " us-ascii "

>Content-Transfer-Encoding: 7bit

>

>Dear Dr. ,

>

>I would suggest contacting the hospital's public relations department if

>they have one and suggest getting the message out to the general public

>that your hospital does this procedure or contact a local paper about a

story.

>

>If you have noticed, embolization has featured on some recent news programs

>as well as articles in women's magazines. But I'm sure women who have

>wanted it done have not thought it was done locally. If you have been

>reading messages from the group. You will realize that most of the women

>sought out embolization rather than the gyn suggesting it, so it would seem

>logical to get the info out there so the women can ask their gyn about the

>procedure locally. Or I would assume they could contact you and you and

>their gyn could work something out.

>

>Just a suggestion - publicity for this procedure, I think, would be a good

>thing.

>

>heidi

>>Does the group have any suggestions as to how to promote embolization as an

>>alternative? At least one gynecologist has agreed to help promote the

>>procedure.

>>

>>Thank You,

>>

>>G. Tillman ,MD

>>tillmanbailey@...

>>

>>______________________________________________________

>>

>>------------------------------------------------------------------------

>>MyPoints-Free Rewards When You're Online.

>>Start with up to 150 Points for joining!

>>http://clickhere./click/805

>>

>>

>>eGroups.com home: /group/uterinefibroids

>> - Simplifying group communications

>>

>>

>>

>>

>>

>>

>

>

>

>-----------------------------------------------------------------

>

>--

>View the full archives, subscribe/unsubscribe, use the

>group calendar at http://www.eGroups.com/list/uterinefibroids

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>

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>

>

[Guest guest]

Hello everyone:

This is my first post to this group. I have been reading embo for a while, but

just recently started reading this group and am glad to see the balance on all

approaches to fibroids.

Here's my dilemma: In August I had a d & c scheduled and decided I owed it to

myself to look into UAE prior to going under general anesthesia for a third d & c.

I

went to an IR who said I may or may not be a good candidate for UAE. I have a

very

small submucosal fibroid (very small) and suffer from horrendous bleeding and

clotting. I am 48 years old. I had " possible simple hyperplasia " in 1994, it

was

gone in 1996. All women in my family had hysterectomies; my mother had

adenomyosis

and hyperplasia. Because of this family history and the relative size of my

fibroid, the IR said I should see a different gyn (mine only support

hyserectomy)

and discuss ablation and maybe even myomectomy options, then have an MRI prior

to

any procedure to see if I have adenomyosis. I was shocked at his recommendation;

by

the way I loved him! I have an appointment on the 27th with a new gyn who does

ablations. I don't know what to think, the IR said ablation was less invasive,

I

have heard very bad things about it but can't remember what they are.

Has anyone had similar experiences with UAE NOT stopping the bleeding? Also, I

would appreciate hearing about experiences with ablation, both pro and con. You

may email me privately at corkyb@...

thanks

corky

Carla wrote:

> In my case, I was diagnosed with hyperplasia pre-UAE and was prescribed

> Provera. I took it for 5 months and found the side effects intolerable. My

> bleeding post-UFE became worse than pre-UFE. At the 5 month mark I could

> take it no longer and asked for an endometrial biopsy to determine continued

> presence of hyperplasia. The hyperplasia had abated but the endometrium was

> still 6mm. (I think " normal " is around 2mm.) So, I'm concerned that the

> hyperplasia will return. In addition, hormones are still clearly out of

> balance in my body as the up and down roller coaster of emotional highs and

> lows became extremely apparent about a week after I stopped taking Provera.

> After reading Dr. Lee's and Dr. Love's books, I decided to try the

> progesterone cream. What could it hurt?

>

> I don't know if it's made a difference to the thickness of my endometrium or

> not. I will probably have another biopsy in November and find out. I DO

> know, however, that it has made a tremendous difference in my overall

> emotional stability. Weepy bulls*** is not part of my demeanor these days.

> I feel " even " and do not experience " out of control " extreme highs or lows

> these days. It is a tremendous relief. I know that progesterone attaches

> itself to the same receptors in the brain that an anti-depressant would and

> believe this is probably the reason for my renewed emotional stability.

>

> Carla Dionne

> mailto:cdionne@...

> http://www.uterinefibroids.com

> member, /list/uterinefibroids

>

> -----------------------------------------------------------------

>

> --

[Guest guest]

How do I get into the chat tomorrow night?

[Guest guest]

>How do I get into the chat tomorrow night?

1. Log onto the website at: /list/uterinefibroids

2. Look for the box across the top labeled " chat " . Click on the chat box.

That's it. The chat room utility loads. If you wish to post a question,

look underneath the large primary text box for a field that has a button

next to it labeled " Send " . Type your question into the field and then click

the " Send " button.

Carla Dionne

mailto:cdionne@...

http://www.uterinefibroids.com

member, /list/uterinefibroids

[Guest guest]

debbie hughes wrote:

original article:/group/uterinefibroids/?start=14

08

> Was wondering if somoene can direct me to a page on web to get

natural

> progesterone cream, good brand, at reasonable cost. I have used it

before

> and I liked it, i think it did help but I paid $40. for a small jar,

I

> think thats too much. but I worry some companies maybe offering the

cream

> and its a placebo. Any ideas? I dont believe GNC carries the cream if

> anyone knows different please let me know.

>

> Sincerely,

>

> Debbie

Hi Debbie....try www.doctortodoctor.com This website is that of a lady

gyn from California. She is religious and so all the information there

should have good integrity. I saw her on TV interviewing the author of

a book on hormones. She has an online catalog. I don't know the

price. Have you tried chiropractors? I got some there once. Jeannie

[Guest guest]

debbie hughes wrote:

original article:/group/uterinefibroids/?start=14

08

> Was wondering if somoene can direct me to a page on web to get

natural

> progesterone cream, good brand, at reasonable cost. I have used it

before

> and I liked it, i think it did help but I paid $40. for a small jar,

I

> think thats too much. but I worry some companies maybe offering the

cream

> and its a placebo. Any ideas? I dont believe GNC carries the cream if

> anyone knows different please let me know.

>

> Sincerely,

>

> Debbie

Hi Debbie....try www.doctortodoctor.com This website is that of a lady

gyn from California. She is religious and so all the information there

should have good integrity. I saw her on TV interviewing the author of

a book on hormones. She has an online catalog. I don't know the

price. Have you tried chiropractors? I got some there once. Jeannie

[Guest guest]

I have read and observed the group for quite some time. I find it very

supportive as well as informative. I visited my gyno today and found out that

the fibroid I had 18 months ago (which was 5 week size) is now multiple

fibroids with the largest one being 8 week size (as the doc put it). he

wasn't at all alarming but said as long as they are not " bothersome " I can do

nothing. His options if they become a problem are either UFE or hysto. He

doesn't believe in myomectomy because " they ususally grow right back " .He said

that he referred 10 of his patients to an IR's in the area in the last couple

years...of these 10, 6 were successful. He believed that being age 46 and not

going to have any more kids, that a hysto would be best. f course I was quite

objectionable to that option. I was at least glad to know that he supports

UFE, although claimed only a 60% success rate. He also said that one of those

10 patients undergoiing the UFE accidentally had her intestinal artery

invaded with those " beads " and required an emergency colostomy.....Oh my

gosh!!!!! Scared the crap out of me. What kind of IR could make such a

horrible mistake? Anyway, on the otherhand he said that another one of those

4 patients (that the UFE didn't work for) has scheduled a hysto for next

month. He also said that during menopause (and I probably have another 6-7

years to go), that the fibroids " atrophy " (shrink). I just hope I can make it

to that point without any surgery. He wants to see me every 4 months now for

an sonogram to watch the growth closely.

With my discomfort being probably 20 out of 30 days per month, and the fact

that they did grow in the last 18 months is reason enough to keep a close eye

on things now.

Would welcome any feedback from the group.

Thanks,

Beth

[Guest guest]

I have read and observed the group for quite some time. I find it very

supportive as well as informative. I visited my gyno today and found out that

the fibroid I had 18 months ago (which was 5 week size) is now multiple

fibroids with the largest one being 8 week size (as the doc put it). he

wasn't at all alarming but said as long as they are not " bothersome " I can do

nothing. His options if they become a problem are either UFE or hysto. He

doesn't believe in myomectomy because " they ususally grow right back " .He said

that he referred 10 of his patients to an IR's in the area in the last couple

years...of these 10, 6 were successful. He believed that being age 46 and not

going to have any more kids, that a hysto would be best. f course I was quite

objectionable to that option. I was at least glad to know that he supports

UFE, although claimed only a 60% success rate. He also said that one of those

10 patients undergoiing the UFE accidentally had her intestinal artery

invaded with those " beads " and required an emergency colostomy.....Oh my

gosh!!!!! Scared the crap out of me. What kind of IR could make such a

horrible mistake? Anyway, on the otherhand he said that another one of those

4 patients (that the UFE didn't work for) has scheduled a hysto for next

month. He also said that during menopause (and I probably have another 6-7

years to go), that the fibroids " atrophy " (shrink). I just hope I can make it

to that point without any surgery. He wants to see me every 4 months now for

an sonogram to watch the growth closely.

With my discomfort being probably 20 out of 30 days per month, and the fact

that they did grow in the last 18 months is reason enough to keep a close eye

on things now.

Would welcome any feedback from the group.

Thanks,

Beth

[Guest guest]

In a message dated 11/19/99 1:21:56 AM Central Daylight Time,

Flalabtec@... writes:

<< largest one being 8 week size (as the doc put it). he

wasn't at all alarming but said as long as they are not " bothersome " >>

I am like you, in the " wait and see " catagory.

Becky

[Guest guest]

In a message dated 11/19/99 1:21:56 AM Central Daylight Time,

Flalabtec@... writes:

<< largest one being 8 week size (as the doc put it). he

wasn't at all alarming but said as long as they are not " bothersome " >>

I am like you, in the " wait and see " catagory.

Becky

[Guest guest]

Becky,

Do you have some good days and bad days as well? Do you ever feel like some

days they are " bigger " than others?...Like walking around with a baseball and

other days like it went away?

Beth

[Guest guest]

Becky,

Do you have some good days and bad days as well? Do you ever feel like some

days they are " bigger " than others?...Like walking around with a baseball and

other days like it went away?

Beth

[Guest guest]

Hi Beth,

I would like to respond to your post of 11/19/99:

" I visited my gyno today and found out that

the fibroid I had 18 months ago (which was 5 week size) is now multiple

fibroids with the largest one being 8 week size (as the doc put it). he

wasn't at all alarming but said as long as they are not " bothersome " I can do

nothing. His options if they become a problem are either UFE or hysto. "

Doing nothing about fibroids is " Watchful waiting " It appears to be a

conservative approach, reassures a woman at the time to not address

the situation. But underlying the fibroid growth are possible factors

as hormonal imbalance--excess estrogen, environmental endocrine

disruptors--excess hormones found in diet--ie, red meat, dairy;

or ingested in water/air pollutants; and other " unidentified " constituents,

currently unknown and unaddressed by the medical profession.

You could e-mail the Academy of Obstetricians/Gynecologists (ACOG)

regarding any known published studies that address the success of

" Watchful Waiting " and the percentage of women that successfully

reach natural menopause with rapidly growing fibroids in their early 40's.

At age 43, I too was given that line of " watchful waiting " when I had a

few small fibroids but within 2 years

they had grown rapidly, became very symptomatic and I barely came

under the wire size-wise, to have a FE (fibroid embolization-or UAE). I tried

special diets, eliminated caffeine, exercised, all to no avail within those 2

years.

" He doesn't believe in myomectomy because " they ususally grow right back " .He

said

that he referred 10 of his patients to an IR's in the area in the last couple

years...of these 10, 6 were successful. He believed that being age 46 and not

going to have any more kids, that a hysto would be best. f course I was quite

objectionable to that option. I was at least glad to know that he supports

UFE, although claimed only a 60% success rate. He also said that one of those

10 patients undergoiing the UFE accidentally had her intestinal artery

invaded with those " beads " and required an emergency colostomy.....Oh my

gosh!!!!! Scared the crap out of me. What kind of IR could make such a

horrible mistake? Anyway, on the otherhand he said that another one of those

4 patients (that the UFE didn't work for) has scheduled a hysto for next

month. "

I have been down this road, too. The Chief Ob-Gyn of a major teaching hospital

in Tampa, FL discussed UAE: " oh, those Doctors at UCLA should have their

licenses pulled....they shoot those plastic particles in and no one knows

where

they might go. " Of course, it really rattled me at the time but in the US the

sheer number of FE procedures completed with a good success rate, including

myself now, speaks for itself. Your Gynecologist did not have time to discuss

the significant percentage rates (at least 30% or higher) of women undergoing

hysterectomy who present with surgical damage; immediate onset of surgical

menopause/search to find hormone treatment; potential loss of uterine orgasmic

contractions with removal of the cervix; shortening of vaginal cuff with loss

of

cervix contributing to painful intercourse, etc.?) ACOG's position on uterine

fibroids has now changed such that hysterectomy is the last option to pursue

in the treatment of uterinefibroids.

Have you researched good websites on FE? http://www.uhmc.com,

http://www.fibroidfacts.com. There are also a wealth of websites/list groups

addressing hysterectomy-- Sans Uteri, Hystersisters, HERS Foundation.

Do your homework, Beth, research your condition, get good diagnostic

readings so you know what type of fibroids your dealing with---that is very

important; talk to board-certified Interventional Radiologists, now. An

FE is a uterine-sparing procedure, providing the gift of time to enable

you to reach natural menopause, prevent you from dealing with

surgical menopause-a quality of life issue; and enable you to retain

your current sexuality as it is-uncompromised.

You have had an endometrial biopsy/or diagnostic procedure to

rule out any cancer? Over 90% of uterine fibroids are benign, however,

make sure your covered there. Of course, in the event of a cancerous

/or life-threatening condition, by all means, hysterectomy option would

be appropriate.

Best wishes in your quest for good health, Beth. Examine all the options

available

as they relate to your medical condition. Be a wise, informed medical health

consumer.

Sincerely, Marsha V. Weaver