MEG: Myo (& UAE) Myths

[Guest guest]

Dear Meg: (galations522@...)

I 'd like to encourage you to reexamine and question some of the information

you've been told--and has been portrayed to you as-- " Gospel truth " -- both

about myo and about UAE.

For starters...

Contrary to what some physicians claim, UAE is NOT experimental and it's

certainly NOT new: arterial embolization has been around for 20 plus years!!!

The

only twist is that -originally- it wasn't used to reduce fibroid size and

fibroidal symptoms. That didn't happen until the late '80's. But bear in mind,

even in the early UAE years it WAS used to treat woman with fibroids--to

successfully prevent them from hemorrhaging.

When doctors (usually gynos) describe UAE as " experimental, " it only reveals

either a complete lack of familiarity with the topic (and then I wonder WHY

they aren't staying current with ALL fibroid treatment options) or---else it

reveals a bias against a procedure that they don't perform (i.e., aren't

compensated for)--even though it may be the very BEST option for the patient.

As a comparison, just think: embolization was performed A FULL TEN YEARS

before the first laparoscopic surgery to remove patient gallbladders was done!!!

Nowadays very few patients would hesitate having their gallbladders removed

laporoscopically, EVEN THOUGH IT HAS BEEN PRACTICED FOR _ FEWER__ YEARS THAN

UAE. But no physician these days would consider laparoscopic gall bladder

removal to be " experimental. "

AS FOR MYOMECTOMECTOMY:

I realize that you've already had consults with three (preusmably) skilled

myomectomy surgeons, who have told you that myomectomy would not be indicated

for you due to " massive blood loss " .

But.....ah, yes, Meg, MOST of us here on this list have heard that myomectomy

is " bloodier than the Battle of Bull Run " --or some equally dramatic variation

on that theme.

Of course, it's so very hard to discern fact from fiction when you're in the

examining room.

But the truth is, in the hands of a truly skilled myomectomy surgeon, (many

of whom-- but NOT ALL-- are Reproductive Endocrinologists) patient blood loss

shouldn't be a problem.

I had 46 fibroids removed through myomectomy, fibroids ranging in size from 1

to 9 cms.

Was this some extrodinary one-of-a-kind surgical feat ? You might think so,

unless you're a regular reader of this list--and have read about all numerous

women with large numbers and sizes of fibroids who have them removed

successfully via myomectomy--and without considerable blood loss.

Total blood lost during MY surgery? About 4 oz. (less than a quarter of a

cup). Not too scary, huh? Especially given the fact that I have an underlying

heme disorder which predisposes me to both bleeding and/ or clotting.

A far cry from the blood bath I had been warned about by gyno after gyno

after gyno.

And of course throughout my fibroidal years, gynecologist after gynecologist

usually (brusquely) informed me I wasn't a candidate for ANYTHING except

hysterectomy. Just buck up and get the " hystie, " one former gyno told me. After

all, every single hystie patient of his was " thrilled " about their surgery. Oh,

and he was the same doctor who claimed ALL of his patients on Lupron were

" thrilled " about their Lupron experience. THRILLED?? One hundred

percent????....oh, except for l'il ole UN-THRILLED ME, who just couldn't

tolerate some

terrible side effects.

My pentultimate (ex)gyno warned me that I'd have to be sliced from breast to

pubic bone in order to remove my massive uterus--via hysterectomy, of course.

Then, later, my hem-oncologist practically forbade me to have a myomectomy

because of my propensity to clot and/ or bleed.

According to his right-off-the-top-of-his-head assessment, I would be MUCH

better off having a hysterectomy, than a myomectomy. WHY? I challenged him

about this assertion, and to his credit, he thought about it a bit, and

completely

reversed himself. He agreed that hysterectomy would be no more " safer " for me

than myomectomy. He also conceded that he knew NOTHING about myomectomy.

Okey-dokey.

(Sigh...) Another FICTION exposed.

I don't begrudge any doctor who, for one reason or the other, doesn't

practice a given procedure or surgery. I do, however bregrudge physicians who

withhold diagnostic and treatment information and who fail to REFER patients to

their

medical COLLEAGES who DO have the skill and experience to do a less invasive

or less drastic procedure for their patients.

I can no longer tolerate gynos who are all too ready to dismiss or revile or

make distortions about UAE (or myo for older women) or ANY recognized fibroid

treatment option.

In fact, I've gone so far as to create the PPPP (Purple Patient Protest

Pillow), and am prepare to toss one vigorously straight into the next G.O.D

(Gyno

of Doom) that crosses my path!! :-)

So, what's the best advice that I or anyone on this list would give you?

Ask many questions, and cross-examine the real experts. (BTW, the the expert

on UAE's is an Interventional Radiologist, not a gynecologist--and your

16-week size uterus is not " too large " for UAE.)

Disssect every syllable of the answers.

Do research from a variety of sources, first try to determine whether there

is any bias. Read the handful of fibroid book " classics " , that have stood the

test of time, beginning with Carla Dionne's _Sex, Lies & the Truth About

Uterine Fibroids_ and Dr. H. 's _A Gynecologist's Second Opinion_.

Seek advice from the LOL (Ladies of the list...i.e., us!!!) and be sure to

consult the archives of this list, a goldmine of information.

Take every detail of your health into your questioning, but persistent,

truth-seeking hands.

-Roma

P.S. I also wanted to address your menstrual migraine problem, but I think

I've gone on long enough for one post!!

In a message dated 4/20/2004 12:52:33 PM Eastern Daylight Time,

galations522@... writes:

was dx'd 2 months ago with a 16-wk-size uterus, one 6 cm

fibroid and multiple small fibroids. My symptoms are a " pot belly "

due to uterine size, urinary frequency noticeable mostly at bedtime,

and heavier bleeding on days 2 & 3 of a 5-day flow. I have also

suffered with severe, prolonged menstrual migraines for over 5

years. I am currently 47. I have had three gyn surgical

consults and am particularly happy with one gyn surgeon at Mayo. All

have recommended a vaginal hysterectomy or watch and wait (if I

prefer that, it's okay with them if monitored).

I've seen a prominent headache neurologist at Mayo for five years.

All treatments (including every migraine preventive, Botox,

acupuncture, etc.) has failed. Second opinions have verified that

all possible options have been pursued at this point. I am currently

on disability due to the extreme frequency of migraines. I was

diagnosed with anemia when my fibroids were found, but the anemia

quickly resolved with iron therapy. Iron therapy seems to have

?helped a bit with daily headaches, but has not touched my hormonal

migraines. Abortive medication for the migraines works sometimes,

but hardly at all at other times.

The most current treatment idea from my gyn surgeon (who knows I'm

watching and waiting on my fibroids) and my neuro and family doctor

in consultation together was to put me on Mircette BCP in hopes of

stabilizing my estrogen levels. They hoped stabilizing my estrogen

level would have a positive impact on my hormonal migraines,

hopefully reduce heavier bleeding during the heavier days of my

period, and should stabilize fibroid growth since I shouldn't have

any huge spikes/fluctuations in estrogen production. I was told the

Mircette was such a low dose (20 mcg) that it should not cause the

fibroids to grow. My research regarding Mircette and other low-dose

BCPs seems to confirm this.

Has anyone else who has fibroids taken Mircette? ALSO, if my " only "

symptoms are a " pot belly " and urinary frequency at night, I am

normal to want to watch and wait and not pursue a hysterectomy? I'm

hoping I can wait until medical therapy like raloxifene or asoprisnil

or another is safe and FDA-approved or menopause helps to shrink

my fibroids. I have thoroughly researched UAE/UFE and I do not

desire this procedure at this time; all my physicians have expressed

their concern it is still too experimental and my uterine size

probably too large. I do not wish to pursue UAE at this time.

Anyone on Mircette or another low-dose BCP or have you taken it in

the past? What has been your experience? Thanks!

Meg