Kathy: Addressing Adenomyosis w/e & Sonja's stories

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In a message dated 4/23/2004 8:17:05 PM Eastern Daylight Time, ringlein

Dear Kathy:

First of all: I'm happy to hear the reassuring news about your endo

biopsy--as I'm sure YOU must be!

You should know, I'm hardly an expert on adenomyosis. I should have ALSO

specified in my post that I had only FOCAL adenomyosis--a small area, which can

be

removed during myomectomy not DIFFUSE adenomyosis. (i.e.widespread adeno,

which cannot).

Furthermore, I had no idea I had ANY adenomyosis whatsoever, until AFTER the

fact(i.e., upon learning the results of my myomectomy) . However, that's NOT

because of any negligence on the part of the medical profession. It's just

consistent with how very, very difficult it is to actually diagnose adenomyosis.

I've read that only 10-20% of adenomyosis cases are actually able to be

diagnosed PREoperatively.

I've also read: " Clinical diagnosis of adenomyosis can no longer be

considered as a reliable preoperative indication for hysterectomy. "

That means on pelvic examination, no matter how much your doc believes he can

detect it, he can't be absolutely sure of adeno. It's easy to confuse with

uterine fibroids, endo and other conditions. I wouldn't want to have a

hysterectomy just to learn which it was.

How was YOUR diagnosis made?

The best test we have today for detecting adenomyosis is MRI, especially on

the T2 weighted images.

Furthermore, be aware that adenomyosis is often FALSELY made as a diagnosis.

Two interesting relevant cases that come to mind on this list are fellow LOL

Sonja and e. Both women were told they had adenomyosis. Later, both

learned definitely that they did NOT.

Actually, prior to my myomectomy I was strongly expecting that my current

doctor would find not adenomyosis, but rather, some ENDOMETRIOSIS during

surgery.

That's because about a decade earlier, my previous gynecologist had found and

removed endo on two occasions (and by the way, I have the videos of those

surgeries, if you're ever in town, and want to come by and see a reallllly

action-packed flick!!)

In typical " G.O.D " (=Gyno of Doom) fashion, this 1992 gyno had predicted with

absolute certainty that my endometriosis would progress to a point that

hysterectomy would be inevitable. Ah, such gloom and doom!!! Abandon hope, all

ye

who have benign gynecological pathologies.

Well, it ain't necessarily so. And t'wasn't so. After 1992, contrary to his

ominous predictions, there was no further trace of endometriosis. None at

all in my 1996 surgery, and none in 2003.

As for focal adenomyosis--that was easily removed last year and the uterus

was resected.

As for your situation, I couldn't help but notice that you write that you

have NO SYMPTOMS!

Kathy, if it ain't broke....why tamper with it?

It's not that I'm trying to put a Pollyanna spin on this, but where is it

written that adenomyosis patients MUST have a hysterectomy? Hysterectomy may be

a

sensible choice when a patient is symptomatic, but if you're not, why oh why,

have any surgery?

Sounds like you are the perfect " watchful wait " patient. If I were in your

shoes, with no symptoms, I'd wait it out till menopause--which, I'm assuming is

just around the corner, if you haven't reached it already. Things almost

surely will get better.

Then, too, as a WWW ( " watchful waiting woman " ), you may be one of the ones

that benefit from the new treatments in the pipeline at some future date. If

there is promising research developments in progress, chances are good that

Carla Dionne will share it with us, the moment it's published--perhaps even

BEFORE

your doctor!!!! ;-) So STAY TUNED to the Carla Channel !!!!

MYO MALARKY

You, I and sooo many other of us have heard over and over again: " Myos are

ONLY for those who want to preserve fertility. " Oh, balderdash! That's one of

those " MMMM " Medically Meaningless Myo Myths. (As you probably have figured out

by now, I'm fond of inventing acronyms, on an " as needed " basis)

There's no MEDICAL basis or logic for that.

That belief should have gone out with chastity belts, frontal lobotomies

and the stupid, old-fashioned thinking that children should be seen, but not

heard.

A belief and practice premised on the idea that a woman's womb was nothing

more than a " baby carriage. " As they say in Moscow, that's utter BOLSHOI!!!

Oh-one final thought. Something to investigate, as poster " THEMIS973 "

mentioned today, is UAE in the treatment of adenomyosis. Something to check out.

http://www.amc.edu/getnews.cfm?newsid=133

I also seem to remember Dr. Spies down in DC conducting studies on UAE with

adeno. There may be others. Might be worth a consult with them.

Let me know what you think.

-Roma

@juno.com writes:

My diagnosis is adenomyosis only, so far

Can you tell me more about your surgery and your doctor?