Introduction and Request for Help/Info (long)

[Guest guest]

Hi everyone,

I made a post/reply this morning in the thread " Re: Fertility and

myomectomy in central PA " but wanted to come back and actually

introduce myself and give a little info. I've been lurking for

awhile, so have had a chance to read current threads, as well as

browse the archives. This seems like a wonderful place with so much

info and support! It's been a huge help to me to be able to read your

stories and advice. My story might seem mild compared to some of

yours, but here goes...

My fibroid-related trouble started about five years ago with heavier

periods and some cramping, breakthrough bleeding, etc. -- not

previously a problem for me. Played what I like to call " BCP

roulette " with my gyn for about six months... that is, kept trying

different BCP's to see which would solve the bleeding problem.

Nothing really worked. Meanwhile, periods and breakthrough bleeding

were getting worse.

Dr. was theorizing that I had a small fibroid or polyp in, so did a

hysterosalpingogram in office in which she " saw something " and

recommended diagnostic hysteroscopy to remove the suspected

polyp/fibroid. I did my research, weighed the options and decided it

was the best solution at the time. Short version was that the doctor

didn't see anything in the uterine cavity during the procedure, but

noticed and photographed a rounded distension into the fundus. And

then she perforated my uterus and ended the procedure -- still unsure

as to what my problem actually was. (BTW, had no insurance at this

point so was $3K out of pocket for an inconclusive procedure and

perforated uterus.) That was four years ago.

After that I decided to take a " wait and see " approach, but every

year the periods have gotten worse -- 14-16 day duration, extremely

heavy bleeding, excruiating cramping, and a " clot day " during which I

spend several hours passing large clots (yuk and sorry, TMI). My

doctor was theorizing adenomeiosis (sp?) and seemed pretty

comfortable that she had deduced my problem. However, I was miserable

and whatever was wrong with me was definitely affecting my quality of

life. Trying to work during my period was a nightmare. Trying to plan

around the estimated clot day (never knew exactly when it would be)

meant cancelling plans and camping out in the bathroom. Vacations?

Let me check " my calendar " first. New clothes? Not unless we're

talking black pants.

Nine months ago I had an ultrasound that showed that I did indeed

have a submucosal mass distending into the fundus, approximately 5 cm

in diameter. I was also pretty anemic (hematocrit 32). During a

follow-up consult, my doctor presented a variety of options,

including wait and see, Lupron, myomectomy, UAE, progestrone-based

IUD, hysterectomy. No recommendations from her, and whatever I want

to do was fine.

After a lot of consideration, and what I hope is enough research,

I've decided on an open myomectomy. I'm 38 and married, but with no

children. While my husband and I are unlikely to have children, I

don't want to totally close the door on the possibility until nature

does. Also, at my age, and with with only one fibroid (but apparently

it's working hard -- my surgeon said I have " admirable bleeding ;->),

I can't see the point in a hysterectomy. In fact, I'm pretty

vehemently opposed to the idea for myself. I like the idea of keeping

my uterus; despite this little war we're having.

*So, I'm scheduled for the procedure next Thursday (yikes!!!). Once I

made the decision for the surgery, I just want to get it over with.

So, the main thing that has me freaked out now is the " hysterectomy

release " -- and here's the question: how many of you who have had

myomectomies have had to sign this thing? My doctor has said nothing

about such a document. And for me it's a showstopper -- I can't go

into a surgery assuming that I'm having a fibroid removed and worry

about waking up to find that they've taken the whole uterus! That's

like going in for ACL surgery and having your leg amputated! [OK,

peeling myself off the ceiling.] I feel like I'm so close to getting

my life back -- but not at the risk of a hysterectomy. I mean, if I

wanted to agree to that surgery, then that's the procedure I'd be

having instead.

So that's my story. If you've made it this far, thanks for listening,

er, reading. Any advice/info re: myomectomy and this " hysterectomy

release " would be much appreciated.

Anni