Very long post from very confused Texan

[Guest guest]

This is my first post, although I have been lurking for several

months. I am 47 years old, no children, and recently divorced, so

none likely.

I found out about 2 years ago that I have fibroids. I had been

having extremely heavy periods with large clots as well as lesser

bleeding throughout the month. Nevertheless, I ignored the problem

until one day I went for a walk and about halfway through, I

simply " ran out of gas " . At that point I tried to head home, but I

would walk about 20 or 30 feet and have to stop again because I

couldn't catch my breath. After about 50 such efforts, I managed to

return the few blocks to my home. That FINALLY got my attention.

I went to the doctor who did blood work and found out my hemoglobin

was 8.4. Not good, although I've heard a lot worse on this list. He

scheduled a pelvic sonogram, which show multiple fibroids. I think

he said 3 submucosal fibroids at the time, the largest of which was

slightly larger than 3 centimeters. Being an old fashioned doctor,

he immediately said I need a hysterectomy. I asked about

alternatives and he said my fibroids were too large for a

hysteroscopic resection. (From what I have read since, that appears

to be inaccurate, although the position of the fibroids could have

precluded resection.) He mentioned myomectomy, but mentioned the

risk of heavy bleeding and strongly pushed hysterectomy because " you

don't need your uterus " .

He also prescribed hormones (Necon), which seems to have lessened my

bleeding problems. No more mid month bleeding, except for occasional

spotting, and reduced periods, although still very heavy and with

large clots. With the lessened bleeding problems and iron

supplements, I eventually returned my hemoglobin and iron counts into

the normal range. I still have a great deal of fatigue, frequent

headaches, etc. I am also becoming aware of the mass of my

fibroids. Although my uterus is not especially large, I have a

uncomfortable, weighty, and crampy feeling most of the time.

I recently decided to go to a female gyn with the hope that a female

would be less likely to be dead set on hysterectomy. No such luck.

She said the same sort of thing everyone on this list hears. She

scheduled another pelvic sonogram to be done and reported that my

fibroids had doubled in size (the largest now 6+ centimeters). She

said I also had a mass on my right ovary. I was distraught at this

time and wondering if I was being foolish to resist the inevitable.

I agreed to let her schedule a hysterectomy. Her nurse called back

the next day with a surgery date in one week. I was shocked. Every

time I needed to schedule an appointment for exam, sonogram, or

follow-up consult, I had to wait 3 or 4 weeks for the appointment.

But agree to surgery and ….voila, 1 week! That wasn't even adequate

time to arrange an extended absence from work. The wrench in my gut

also solidified for me just how much I really didn't want a

hysterectomy and why I had played the " wait and see " game for 2

years. I told the nurse to cancel the surgery and schedule another

appointment to discuss alternatives.

It was at this time I found the embo and uterinefibroids yahoo

groups. (Hey! I'm not the only older woman to want to keep her

uterus.) Based on some suggestions on the list, I requested a copy

of my sonogram report to get a better picture of what I was dealing

with. The content was:

Uterus: 9.2 x 10.7 x 9.0 cm (multi-fibroids)

Endometrium: Could not be visualized due to fibroids

Rt Ovary: Solid mass 4.7 x 2.6 x 3.8 cm

Lt Ovary: 2.3 x 2.7 2.6 cm

Comments: Multi-fibroids the largest measuring 6.2 x 3.2 x

5.0 cm

Not as detailed as I would like. Where are the fibroids and how many

is multiple?

When I went in for the consult, I asked my gyn about the position of

the fibroids and she said submucosal and intramural. When asked, she

told me that she had done 2 myomectomies in the past 6 months. She

also said she would probably want to just remove my ovary, because

you couldn't get tests at the time of surgery to tell you if a mass

was cancerous. If I didn't want the ovary arbitrarily removed, she

would have to take a biopsy, then close me up. If tests came back

positive, she would have to go back in later to remove the ovary. I

asked about possibly getting a referral to an RE, but she said they

would likely refer me right back to her because of my age. She

scheduled an endometrial biopsy (probably overdue). The nurse called

me back a few weeks later, mentioning no uterine cancer cells, but

the existence of a polyp, and that I needed to get my hysterectomy

scheduled.

By this time, I was stubbornly in the " only cancer will cause me to

remove any of my organs " mode. When I last went in, my gyn seemed

pretty fed up with me and simply asked me what I wanted to do.

Because the polyp can be removed hysteroscopically, I suggested maybe

it could be removed and the fibroids evaluated for resection at the

time. From the yahoo groups I have found out that some doctors will

resect fibroids larger that 3-4 centimeters so long as you are

prepared to undergo more than once procedure. Then my gyn said she

didn't think my fibroids were impinging on the uterine lining. OK.

First they were submucusal, then submucosal and intramural, and now

they aren't submucosal at all. Multiple fibroids (number unknown)

migrating around my uterus (location unknown). Mmmm. I start to get

the feeling that I am always told whatever will most likely urge me

to hysterectomy. If I don't have submucosal fibroids, can all the

bleeding be from one polyp?

Because I just don't trust I can go into surgery for a myo and not

wake up with a hyst with my current gyn, and because she proved right

about the RE based on the one I spoke with (who wouldn't do a myo

unless I also needed their egg donor program), I suggested that she

refer my to an IR that was part of my Cigno North Texas HMO and who

was listed as doing UFE.

I wanted to schedule the polyp to be removed ASAP, but my gyn wanted

to schedule the polyp removal and surgery to evaluate my ovary at the

same time. I thought I saw a post on this list (or perhaps

uterinefibroids) concerning the use of MRI to evaluate ovarian masses

as being cancerous or not. My gyn also made it sound at times as

though she really couldn't be sure from the sonograms whether there

was actually an ovarian mass or if a fibroid was simply in the way.

With those 2 factors in mind, I thought that perhaps I should check

with the IR first and perhaps the MRI could tell me whether there

actually is a mass on my ovary and whether I actually need to have my

abdomen cut to evaluate the ovary.

So I am desperately seeking advice and input:

1) Is the doctor correct in that an ovarian mass cannot be

evaluated at the time of surgery? Do the tests take too long?

2) Does anyone remember posts concerning the use of MRI to

identify cancerous masses?

3) Since I have multiple things going on, in different parts of

my reproductive organs, should I forget about even investigating the

UFE option and continue to look for a better surgeon for an abdominal

myomectomy?

4) I spoke with the IR's office to find out if Cigna even

covered UFE (they said yes) and they said they could refer me to

other doctors with myomectomy experience if I was not a candidate for

UFE. It may be that these would be excellent referrals, but can

anyone recommend a doctor with a lot of myomectomy experience in the

Dallas area? Most of you ladies seem to be from the west or east

coasts.

Any suggestions concerning how to best proceed would be appreciated.

Every time I thought I knew my next step, something new just popped

up to complicate the issue. I've made the same post on the embo

group.