Confused About the Alternatives Open to Me

[Guest guest]

First, let me say how much I appreciate this board as a resource.

It's been a godsend to me.

After reading through the archives as best I can, I wanted to ask for

some insight from anyone who may have been/is in my particular

situation. I'm a little confused about the best course of action to

take at this point in time.

I have been suffering from uterine fibroids for 2 1/2 years. There

appear to be three main fibroids: a 2.1 x 1.5 cm submucosal, a 1.1 x

1.5 cm intramural, and a 6.0 x 5.1 cm pendunculated. My main symptom

for about the first year was heavy, gushing periods with extremely

large clots that triggered much heavier cramping than I had ever

experienced before, including bouts of labor-level pain. During the

last year, the gushing episodes have not been quite as bad, but I

bleed almost continuously and the level of cramping has increased

alarmingly. In January, I had such a horrible bout of cramping that I

was in labor-level pain for five hours at a stretch over a 36 hour

timeframe while I passed liverlike clots.

1 1/2 yrs ago, my OB/GYN recommended I consult an RE to evaluate me

as a candidate for hysteroscopic resection for the submucosal fibroid

since that was presumed to be the fibroid causing the bleeding.

After a sonohysterogram, he decided he could not do that procedure

and instead indicated he'd have to do an abdominal myo to remove the

fibroid because of its position. While the pendunculated fibroid

could be removed laparoscopically, we didn't focus on that one

because it didn't appear to be causing my symptoms. Since I wasn't

ready to committ to abdominal surgery at that point in time, I put

things on hold.

Of course, my situation only worsened and I'm now having bulk

symptoms in combination with the non-stop bleeding and cramping. A

month ago, I consulted an IR regarding a UAE (again based on a

recommendation by my OB/GYN). After initially recommending

hysteroscopic resection (I filled him in on my history there) he said

I was an acceptable candidate for UAE. Most of our discussion

centered around the potential complications in sloughing the

submucosal. We did not really discuss any complications arising from

the pendunculated fibroid. After giving it some thought and doing a

lot more research (particularly on this board and elsewhere) I

decided the risk was worth.

But then I stumbled across quite a bit of information that recommends

against UAE for pendunculated fibroids. Now I'm thinking that

abdominal myo may be my only option.

Has anyone here had a UAE under these circumstances and have any

experiences to share? I'd greatly appreciate it. I'm starting to

think that my best viable option is abdominal myo, which sort of

scares me, since I've never had surgery before. Also, the RE I saw is

in Philly, which is a good 40 miles from my home, creating all sorts

of problems for me regarding post-operative followup. But I don't

know if my ob/gyn is really proficient enough in myo. These aren't

questions I've asked her yet, because we were pursuing the two other

alternatives first. Des anyone on this board have any

recommendations for REs in the Philadelphia, PA area?

Chris

[Guest guest]

Like you, I had a pedunculated fibroid. My doctor told me that UAE

was not advisable for pedunculated fibroids because there is a higher

risk of compliations with pedunculated fibroids. Also, UAE was not

advisable in my case because I want to have another baby, and UAE's

effects on fertility are not understood well enough.

It's always scary going in for surgery. I've had surgery 7 times, and

I still get extremely nervous about it. The good news is that myos

for pedunculated fibroids are usually quicker and less complicated

than other types of myos, and the patient's recovery time tends to be

faster. My myo took an hour, I didn't recover a blood transfusion, I

went home from the hospital the next day, and I returned to work the

third week after my myo (I worked at home for two weeks). If you'd

like to read a detailed account of my myo, see:

http://home.comcast.net/~cmagadieu/myoreport.html

As for doctor referralls, I had my myomectomy in Mass., so I can't

recommend any gynecologists in your area. However, here are some

resources that might help:

Letitia Wetterauer has compiled a list of doctors based on

recommendations posted in fibroid newsgroups that she has

participated in:

http://www.public.iastate.edu/~lkwetter/Docs.html

The database at

http://health.groups.yahoo.com/group/uterinefibroids/database lists

some doctors that members of the Uterine Fibroids group have

discussed. The doctors listed in the database are not necessarily

listed because they're referrals; you should read the related posts

to see what members had to say about the doctors.

Cheryl

I'm starting to think that my best viable option is abdominal myo,

which sort of

Does anyone on this board have any recommendations for REs in the Philadelphia,

PA area?