Scared newbie - Large fibroids

[Guest guest]

This is my first post here, forgive me if it runs long.

I'm 37 years old and I was diagnosed with fibroids almost a year

ago. I'd had no indication that anything was wrong at the time. My

doctor recommended a hysterectomy if I wasn't planning on having any

more children. We decided to monitor them for growth.

Now the largest is 16cm (length) x 10cm. There are a couple more

that are about 5cm each. The doctors say my uterus is about 20-week

size. I have no pain, pressure or heavy bleeding. I got a second

opinion from another doctor, (another doctor at the Cigna medical

center) and she also recommends hysterectomy pretty soon as it is

obvious they're not going to go away by themselves. She also said

that she would want to give me Lupron in order to shrink them before

surgery.

I asked about Myomectomy, she said that they could try it, but I'd

have to be really open to having them do a hysterectomy if they

opened me up and found that it was too complicated to remove the

fibroids. I also asked about UAE/UFE and she said that it wouldn't

shrink the fibroids enough, hence her Lupron recommendation.

I've been warned to stay away from Lupron, as the side effects can be

horrendous.

I'm not sure what exactly what I want to ask, I guess I just wanted

to communicate with others who have fibroids.

The idea of having surgery has me truly frightened. Because of the

size of the largest fibroid (about 6 inches) it seems that a

hysterectomy is inevitable. I'm told I'll be down for at least 4

weeks, more likely 6 and maybe even as long as 8 weeks.

Oh, I do have one question: Can anyone recommend any doctors in the

Metropolitan Phoenix area?

Any suggestions, thoughts, or just words of encouragement will be

appreciated.

Thanks,

[Guest guest]

Hi, -

Just to play devil's advocate for a minute, how much shrinkage is 'enough'?

Although my fibroids are/were not as big as yours, I figured I could always

have a hysterectomy in the future if there was not sufficient shrinkage as a

result of the UAE to cause the cessation of my symptoms. Happily, it looks

like the UAE is doing the job. Why not go for a consulation with an IR and see

what he/she says. I've found that gynecologists have a tendency to be

notoriously misleading when giving 'advice' regarding UAE. (My original

gynecologist, like yours, suggested Lupron and hysterectomy as my ONLY

options. I'm very happy that I ignored her advice and found a new doctor.)

UAE is non-invasive and has a drastically shorter recovery time than

hysterectomy. Even if you end up having to have surgery down the road, it

would probably be simpler, I would think, if the fibroids were smaller due to

the effects of the UAE.

Ellen

[Guest guest]

DD, did I understand thatt your fibroid is 17 cm? How did you find a doctor

to do the myo? My gynocologist wants to do a hysterectomy due to the size of

the fibroid (9.3 cm) and the fact that I have a cyst (1 inch) on each ovary.

He said there were no other methods due to the size. Does anyone know how to

go about finding a good doctor to perform or consider a myo. Thanks much.

[Guest guest]

Hi ,

I'm scheduled for a myo in Jan and my fibroid is larger than yours. Its about

17cm and I have a 20+ week size uterus from what may very well be just this one

giant 7-8 inch fibroid. I was very concerned I wouldn't be able to find a

doctor to do a myo with a fibroid this large. The gyn I saw last year told me a

hysterectomy was my only option. Thanks to the ladies on this list, I decided

to consult an RE, rather than a regular ob-gyn. My doctor (who's in CT, so

unfortunately out of your area), doesn't expect any problems doing a myo. He's

told me he's removed larger fibroids than mine and has removed as many as 30

from one patient. He's says he's never had to convert a myo to a hysterectomy.

I've also just had my first shot of lupron to attempt to shrink it a bit prior

to surgery. So far, no side effects. I was also told the recuperative period

would be 4-6 weeks, with 4 or 5 weeks being the average. Everyone's different of

course.

I personally think when a doctor says a myo may be too complicated, they mean

too complicated for his/her skills. I would be concerned about having surgery

with a doctor who said she " could try it " but you would have to be open about

converting it to a hysterectomy. I don't think any doctor can absolutely

guaranttee a hysterectomy won't be necessary, but I think a doctor should be

able to tell you how many myos he/she has performed, how large and numerous the

fibroids, and if any hysterectomies had to be performed and under what

circumstances. " Too complicated " is not good enough.

Good luck,

DD

[Guest guest]

Hi Ellen,

Thanks for responding. I have no idea what the doctor considers to

be 'enough' shrinkage. My assumption is she meant small enough to

make her job easier. I'm scheduled to meet with my regular Gyn in a

few weeks, I'll tell him that I need to meet with an IR to talk about

UAE.

If I end up having to have a hysterectomy, fine. I just want to be

sure I check out other possible options, and hopefully I won't regret

my decision.

[Guest guest]

Hi DD,

It's reassuring to know that because of the size of this one fibroid,

I'm not doomed to have an hysterectomy.

You said you consulted an RE... What type of doctor is that?

[Guest guest]

There are doctors that specialize in taking out the fibroid with minimal

risk to your body period. Find one that specializes in doing it right the

first time. Myomectomy is my choice and I'm being scheduled for

Friday, November 15th once my insurance issues are confirmed.

I'm not freaking out because with the proper research, openness and

frank discussions with the right professionals you will get better solutions

for you.... Getting distraught and worrying over everything that you can't

control just makes the situation that more difficult.

Breathe, read, gather and go with your best intentions.....

[Guest guest]

-

Hmmm, or your doctor could have been concerned more about her not

having a job to do with respect to your case if you went the UAE

route. I've learned to become very suspicious of gynecologists'

intentions. It took me 4 'second' opinions before I finally found a

gynecologist who would take the time to actually go through my history

and discuss all of the options with me. The MRI and consultation with

the IR was well worth the time even if it turned out that I didn't go

that route.

Keep going in the direction you're going and get armed with as much

real information as you can before making a decision.

Ellen