Re: new to group and very frustrated

May 3, 2001

KD wrote on 2 May 2001: " ... he said the area where the fibroid was is slow to

heal and for lack of another way of putting it leaves a " sticky " surface that

everything wants to adhere to.(has anyone ever heard of that?)... "

Interestingly, the radiologist I went to warned me of the same phenomena on the

surface of embolised fibroids. He also used the word " sticky " . He was warning me

of potential complications with a very large subserosal fibroid.

There isn't anything I know that can be done to avoid adhesions as a consequence

of UAE, as far as I know. The probability might be assessed according to the

size and position of the fibroids, but little is known about the incidence of

adhesions with UAE.

Adhesions, esp. I think bowel adhesions, are a well-known complication of

abdominal surgery, not just myomectomy. In a myomectomy, the surgeon wil

probably use a barrier material such as " Interceed " to minimise the risk of

adhesions. Avoiding bending and lifting in the weeks after surgery is also

supposed to help.

I suggest you think more about whether you might try for a baby with your new

husband in the next couple of years. If that is a possibility, you might look

to consult a gynaaecologist or reproductive endocrinologist who has more

experience and skill in myomectomy than your present doctor. Otherwise, you

could consult an IR about embolisation. Or you may wish to consult both while

you explore your options. There are several women in Florida on this list who

have had myomectomy and/or UAE; they could probably offer you some contacts.

As your dominant fibroid is large and growing rapidly, I would not recommend

delaying treatment for long.

May 3, 2001

That is the most totally outrageous one I've heard yet. He's really

telling you he is not skilled at the myomectomy procedure. I'd run

from him. For him waiting puts the ball in his court. The bigger it

gets the more likely you'll be forced into hysterectomy.

It's been about a year and a half since my myomectomy for big

fibroids and I never once had anything like what he is describing. I

haven't had any problems at all and I'm so happy to be rid of them.

All I have is a bekini scar that I don't even notice.

Is he being patient because he thinks you are misguided in your wish

to save your uterus and thinks you'll eventually come around to right

thinking when things get bad enough?

I didn't have any symptoms from mine untill they got to 18 weeks

size. By then the size became an issue in finding a skilled surgeon

to remove them who also wasn't biased about my age. They are out

there and it is certainly doable. They are just harder to find.

The uterus is essential for life long health. I'll go into this

further if you wish.

Tish

May 3, 2001

That is the most totally outrageous one I've heard yet. He's really

telling you he is not skilled at the myomectomy procedure. I'd run

from him. For him waiting puts the ball in his court. The bigger it

gets the more likely you'll be forced into hysterectomy.

It's been about a year and a half since my myomectomy for big

fibroids and I never once had anything like what he is describing. I

haven't had any problems at all and I'm so happy to be rid of them.

All I have is a bekini scar that I don't even notice.

Is he being patient because he thinks you are misguided in your wish

to save your uterus and thinks you'll eventually come around to right

thinking when things get bad enough?

I didn't have any symptoms from mine untill they got to 18 weeks

size. By then the size became an issue in finding a skilled surgeon

to remove them who also wasn't biased about my age. They are out

there and it is certainly doable. They are just harder to find.

The uterus is essential for life long health. I'll go into this

further if you wish.

Tish

May 3, 2001

That is the most totally outrageous one I've heard yet. He's really

telling you he is not skilled at the myomectomy procedure. I'd run

from him. For him waiting puts the ball in his court. The bigger it

gets the more likely you'll be forced into hysterectomy.

It's been about a year and a half since my myomectomy for big

fibroids and I never once had anything like what he is describing. I

haven't had any problems at all and I'm so happy to be rid of them.

All I have is a bekini scar that I don't even notice.

Is he being patient because he thinks you are misguided in your wish

to save your uterus and thinks you'll eventually come around to right

thinking when things get bad enough?

I didn't have any symptoms from mine untill they got to 18 weeks

size. By then the size became an issue in finding a skilled surgeon

to remove them who also wasn't biased about my age. They are out

there and it is certainly doable. They are just harder to find.

The uterus is essential for life long health. I'll go into this

further if you wish.

Tish

May 3, 2001

It's worth it to get another opinion to see if your fibroid is really as big

as your doctor says it is. That is really a short period of time for it to

grow so much. You don't really want to delay in case it really is growing

so rapidly! I think it is a good idea to get a second opinion before

considering a hysterectomy. Maybe you could go to a reproductive

endocrinologist. You should also have your blood count tested regularly to

make sure you don't become anemic. I only bled heavily for one day each

month but my periods were prolonged. My blood count dropped from 11

(slightly below normal) to 7.6 in a year because I ignored my doctor's

recommendation of iron pills. Then he put my on three iron pills a day

which brought my blood count to normal levels.

Therese

new to group and very frustrated

on 3/9 i went in for my yearly,feeling fine and not expecting to hear

anything unusual but was told my uterus was twice its normal size.i returned

in two weeks for a sonogram that revealed an 11cm. fibroid,i believe

submucousal.the doc and the sonographer (when i asked) suggested i have a

hysterectomy.i left the office and began researching.on 4/27 i went in for a

consult (having saturated my brain with info.) and he did another pelvic.my

tangerine had grown into a honeydew in that short of a period of time. i

have read that rapidly growing fibroids can indicate cause for concern.i

really like him and he has been very kind and patient.he seems fine with the

watch and wait approach for now but after all the back and forthing i've

done in my brain,i just keep seeing myself having a hyst. in the near

future.i'll be 43 in july.i have a son 8 and a daughter 16.i've always

wanted another baby but i don't really think it's possible (for several

other reasons).i am also newlywed to a very wonderful man who supports me in

every way.though i live in a large city,(jacksonville,fl.) i haven't found

anyone familiar enough with u.a.e. to feel comfortable with that route.my

doc says he performed many myos earlier in his practice but htat he saw lots

of problems with them down the road.he said the area where the fibroid was

is slow to heal and for lack of another way of putting it leaves a " sticky "

surface that everything wants to adhere to.(has anyone ever heard of that?)i

will finish by saying that my symptoms are sooo minor compared to what iv,e

read about other women.my periods are 24-28 days apart with 2 heavy days

(sleeping in adult diapers),minimal cramping and that's it.my most

bothersome symptom is pressure on my bladder with some burning not

associated with u.t.i.

sorry for the lengthy intro.i would appreciate any input.

k.d.

May 3, 2001

In a message dated 01-05-03 21:29:44 EDT, you write:

<< sorry for the lengthy intro.i would appreciate any input.

k.d.

>>

You're on the right track to keep reading and examining options. I would

recommend a couple of books:

The Hysterectomy hoax, by Dr. Stanley West.

Fibroids: the complete guide to taking charge of your physical, emotional,

and sexual well-being, by Johanna Skilling

A few women who post here have been patients of Dr. West and have recommended

him highly. (He's in NYC.) The premise of his book in the fibroid chapters is

that myomectomies can be performed on any woman at any age with any sized

fibroids.

Others will be able to tell you of their UAE experiences.

Another path to pursue might be to find a clinical trial for

RU-486/mifepristone to buy yourself some time. I've been in a study at the

University of Rochester for nearly 6 months, and I have definitely seen my

fibroids shrink in that time period. I went from a 30-week sized uterus in

November to 19-weeks-size in March, and I'll be checked again soon for the

next progress report in a couple of weeks. The drug doesn't have FDA approval

for fibroid treatment yet; I feel privileged to help advance that process and

do myself some good at the same time. For the record, I'm 41, never had

children, and my gynecologist had initially recommended a hysterectomy

because of a fear of cancer, but she's been supportive of my alternate path.

Take your time and consider what you feel most comfortable doing. Don't let

anyone scare you unnecessarily into a hysterectomy. If you do decide to have

one, you'll feel better about it if you know that you have truly considered

all your options.

Take care,

May 3, 2001