Re: Need Advice, Suggestions, Etc.

[Guest guest]

Investigate uterine artery embolization. At 46 I was in the same place: facing

abdominal hysterectomy, but luckily did some research first. Don't commit

until you feel that you have evaluated all of your options, and don't expect

your gynecologist to tell you all the options you have. (sound cynical? you bet,

for good reason)

Ellen

[Guest guest]

Hi Nilgun,

I'm also 51 and boy don't we wish we were in the group that hit meno

at 45??? First of all, are the fibroids causing any problems? If

they are have you considered UAE? The bottom line is that if you

don't want to give up your uterus, you probably don't have to. Take

some time to learn about your options. Get some books from the

library, and read through the archives on this site. Since you said

you're from Mass, you might want to check out the web sit for the

Center for Uterine Fibroids in Boston. www.fibroids.net A lot of

women join this list having been told they need a hyst and come to

find out they don't. You'll learn a lot here.

Gerri

[Guest guest]

Hi Nilgun,

I'm also 51 and boy don't we wish we were in the group that hit meno

at 45??? First of all, are the fibroids causing any problems? If

they are have you considered UAE? The bottom line is that if you

don't want to give up your uterus, you probably don't have to. Take

some time to learn about your options. Get some books from the

library, and read through the archives on this site. Since you said

you're from Mass, you might want to check out the web sit for the

Center for Uterine Fibroids in Boston. www.fibroids.net A lot of

women join this list having been told they need a hyst and come to

find out they don't. You'll learn a lot here.

Gerri

[Guest guest]

Nilgun, Brigham and Women's has a complete Fibroid Dept. They also have a

website devoted to fibroids that I ran acrossed. That's where I'm going, if my

gyn. doesn't agree to UAE. Someone in this group mentioned a Dr. Levine in

Boston as the Dr. to see. I haven't tried to locate this Dr. since I plan on

going to Brig & Wmn.

in Westport, MA

[Guest guest]

Dear Nilgun,

I had a myomectomy about 3 weeks ago and am doing pretty well.

I also had a 20 week uterus, about 7 fibroids, most intramural, the

largest

about 8.3 cm. My doctor, Dr. Stanley West (an Reproductive

Endocrinologist,

not a gyno), removed the fibroids in a 2 hour surgery, no

transfusion. Dr.

West uses a " Cell Saver " , which recycles blood.

Since your fibroid situation sounds similar to what mine was, I don't

like the

fact that your gyn is making you think that a myo would be a

particularly

difficult sugery (unless you have other health issues which you

haven't

mentioned). I'm also somewhat younger than you (37).

I also don't like that your gyn seems to be pushing a hyst and

apparently has

not advised you of the option of Uterine Fibroid Embolization (UFE).

If I was you, I'd get rid of this gyno because, for whatever reason

(probably

ignorance), your gyn is not giving you a full picture of all of your

treatment

options. Also, the whole song & dance regarding the myo (6 hours,

transfusion, etc) says to me that this gyno does not have sufficient

experience

performing myos.

A number of women have posted that there's a very good doctor in the

Boston area. I don't recall his name, but check out the archives

here.

Since fertility is not a concern, UFE may be a good option for you.

I am not

too familiar with UFE, but many ladies on this board are.

Another option is to " wait and watch " . The idea is to get an

ultrasound every

6 months or so and see if the fibroids grow, shrink, etc. If you do

not have

symptoms, (excessive bleeding, pain), you may want to wait & watch

until

menopause kicks in.

I watched and waited myself into an abdominal myo because, although I

had

few symptoms, the 8.3cm fibroid was pressing on my bladder and could

have

lead to kidney problems if I did nothing. Also, the fibroids caused

fertility

problems.

I believe that Dr. Glassner is in Philadelphia.

Bottom line: Knowledge is power, so I think it would be good for you

to

familiarize yourself with treatment options. A great place to start

is the web

site connected to this board (www.NUFF.org). Also, suggest you read

some

books:

" Sex, Lies and the Tru About Uterine Fibroids " by Carla Dionne

" The Hysterectomy Hoax " by Stanley West, MD)

Second Bottom line: Unless (G-d forbid), there's cancer (and

Fibroids are

NOT cancerous), you do NOT have to have a hysterectomy in order to

treat

your fibroids.

Lastly, unless you're in pain, don't feel you have to rush to make a

decision.

Take your time and feel comfortable with whatever decision you make.

Good luck and let us know how it goes,

Greta

[Guest guest]

Nilgun wrote, " ...I am 51 years old (two children...not menopausal yet)...just

diagnosed with uterine fibroids...the size of the uterus 20 weeks, and 6-8

fibroids , mostly intramural and the largest one is 8.6 cm....The GYN suggests

hysterectomy because myomectomy is difficult....

Yes, with numerous intramural fibroids, myomectomy will be difficult. It

is quite likely that you have more than the 6-8 that appear in the ultrasound

scan. But it can be done, if that's what you prefer. You mentioned Dr Glassner,

who is near Philadelphia. You are in the Boston area; I have seen

recommendations

on this mailing list for a Dr Mitch Levine. Also, Brigham and Woman's Hospital

does research on fibroids and offers several treatment options (though I

have the impression that different doctors on the staff have their favoured

treatments and don't all agree with each other).

At 20 weeks gestational equivalent size, I should think your uterus is

too big for the lap. assisted vaginal hysterectomy you expressed interest

in. But although abdominal surgery has a longer recovery period, some people

say the long-term results are better as the surgeon has better access to

do repair work (support for the bladder, pelvic floor, etc) and the cervix

can be left intact if it is healthy and not covered by the fibroids.

Before opting for surgery, however, you should also consider the less invasive

alternatives.

Brigham and Woman's is doing a trial of focussed ultrasound - I think your

fibroids may be too large for this treatment, but on the other hand I read

someone saying that they weren't accepting women with small fibroids under

5 cm for this trial? As for Uterine Fibroid Embolization, you sound like

a good candidate, as long as you have the procedure down before your fibroid

uterus gets much larger. Did your gynaecologist even discuss UAE with you?

Take some time for consultations and considering all the options, but don't

wait until your fibroids grow much bigger before taking action.

[Guest guest]

In a message dated 10/7/2002 10:00:38 AM Eastern Daylight Time,

cailleach@... writes:

> Brigham and Woman's is doing a trial of focussed ultrasound - I think your

> fibroids may be too large for this treatment, but on the other hand I read

> someone saying that they weren't accepting women with small fibroids under

> 5 cm for this trial? As for Uterine Fibroid Embolization, you sound like

> a good candidate, as long as you have the procedure down before your

> fibroid

> uterus gets much larger. Did your gynaecologist even discuss UAE with you?

> Take some time for consultations and considering all the options, but don't

> wait until your fibroids grow much bigger before taking action.

>

I'm about the same age (50--51 in February) and I spoke to an administrator

for the ultrasound study and she indicated that they would prefer to have

subjects who aren't so close to menopause. Also, the experimental treatment

involves being in an MRI for 4 hours. I'm claustrophic and that was all that

I needed to hear to decide it wasn't for me. I am seeing

who's at Brigham and Women's and participates in research at the Center for

Uterine Fibroids to get a second opinion. That might be something the

original poster could do as well since OP is in the Boston area.

[Guest guest]

To Nilgun, Another GYN you may want to consult is Dr. Sandhya Shah in

Brookline. she did my myomectomy a month ago. i am age 50, but did not want a

hysterectomy and she didnt try to persuade me. she is a good surgeon; i've had

good experiences with her for 15 years and 2 myomectomies.

Robin