MammaJ Mia! Self-Diagnosing/Myo after UAE

[Guest guest]

MammaJ Mia, or should I write.... Mama Mia! (...just one " m " )

By now you should know that your fibroidal uterine status, while causing you

much distress, really is not that *unusual*-- by this group's standards.

Yes, like you, Mama, I do some independent medical research. But over time,

I've disciplined myself NOT to research the hypothetical.

It's tempting to self-diagnose and speculate on what one's symptoms *could*

mean, but, BEWARE!!! You can really open up a Pandora's Box of Needless

Anxiety.

In fact, General Roma, your Commanding Officer, FORBIDS you from going on a

medical " fishing expedition-- " before seeking appropriate medical care.

Even when you have been given a firm diagnosis, a lay person can STILL be

led down a path of seemingly convincing misinformation and unproductive

unnecessary worry-- by the fruits of his/her own research. Not to mention

wasting a

whole bunch of time going down a blind alley. Hoisted by your own petard, you

might say. To paraphrase: " The Patient Who Has Herself for a " Doctor " has a

fool for a Patient, and a Fool for a Doctor! " That applys to Dr. Roma, too!

We have our own fears and biases. More importantly, we lay people lack the

medical knowledge and training that's paramount to the art of diagnosing.

When I first was diagnosed with my hem. malignancy, I read in a lot of the

literature that the medium life span for my condition was 18 months!!!!!

(Sheeeeeeez! So many NUFF posts/songs to write, I thought--...and..... SO LITTLE

TIME left!!!!!!!)

Thank God, I wasn't the patient of a " H.O.O.D " (= " Hem-Onc Of Doom " !!!!! " ),

the equivalent of the " GOD " (Gyno of Doom!!!). My Hem-Onc Doc was able to

provide me with much-needed perspective, solid fact-based reassurance and

updated

information, specific to MY BODY--looking at ALL THE PARAMETERS.

Of course, this same Hem-Onc Doc turned into a bit of a " HOOD " himself when

he said I should " just have a hysterectomy " because having a myomectomy would

be a " life-threatening " surgery for me. But the hysterectomy would NOT BE

!!!!!! ?

HUH?!

And then he went on this silly but impassioned soliloquy about how the uterus

has NOTHING to do with the female orgasm. I interrupted and stammered and

stuttered something, in an attempt to dispute his glaringly unscientific

gynecological claims.

To his credit, he stopped and then actually agreed that his argument was

baseless!! (re: that I had a greater risk in myo than hyst.) and regarding the

orgasm speech, he quickly backed down and said: " Well, er, um, maybe so . . . .

I'm not a woman--I really don't know! " HA! HA!!! That (male) " H.O.O.D. " was

BUSTED by Judge Roma . . . on one charge of BUFFOONERY!!!!! Heheeheheehe!!!!

But, I digress.

Mama, You need to balance any of your independent research with a thorough

examination and conversation with the appropriate medical specialist--who, by

taking a thorough medical history of you, sees YOUR BIG MEDICAL PICTURE.

And always remember what FEELS bad-- may not BE BAD and/or WORRISOME. Some

of the most godawful pain can be inconsequential and benign. Although we lay

people INVARIABELY think of the WORST scenario. . . FIRST!!

Good example: If you've ever had a classic migraine, it may feel and affect

you much like a BRAIN TUMOR would.

(severe pain, vomiting, loss of appetite, distortions of taste and smell,

sometimes aphasia--the inability to think of words, etc.) But a migraine is not

a

brain tumor!

A migraine variant that I've ALSO had ( " silent migraine " ) --is weirder

still. It mimics the symptom of a stroke--or brain bleed !!! No pain-- just a

very

vivid, wild light show, and or partial loss of vision. But it's essentially

benign and harmless, UNLIKE A STROKE.

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You asked me if I was so pleased with the results of the UAE . . . .why did I

go ahead and have a myo AFTERWARDS??

I've already written about this a number of times on this list , so those of

you LOL who've already read my saga, you may be excused now!!!!!! --just try

to stifle your understandable <YAWWWWNNNS!> . . . and simply scroll down to

the next list message now

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Mama, my particular uterine fibroid situation was compounded by a lot of

non-gynecological conditions, which I will reiterate, in a few paragraphs.

But first-- I would characterize my UAE (done on my 21 week size over the

navel uterus) as being successful for the following reasons:

1) My periods, which had become as long as 9-10 days in the year or two

before UAE, were reduced to four or five fairly light days.

2) Flooding incidents and major clotting with my menstrual periods was the

kind of bleeding that was a thing of the past, after my UAE. COMPLETE,

PERMANENT RESOLUTION OF THIS PROBLEM.

3) Pressure on my bladder was COMPLETELY improved. After UAE, I no longer had

to get up 3 or 4 times out of my seat while watching a movie, to avoid

bladder pressure which would was downright painful.

4) Prior to UAE, holding liquid in my bladder for a pelvic Ultrasound was

excruciatingly painful, as well. After UAE, I could hold those 32 oz. for a

sustained period with minimal discomfort. Pressure from the transducer was no

longer painful during ultrasound.

5) My uterine volume diminished by over half its original size (55%)--within

the first six months after the procedure. Curiously, in the three years after

UAE, my uterus appeared to still be shrinking even MORE, albeit very modestly,

after that first dramatic year. And.while the fibroids had not disappeared,

the fibroids had indeed " softened, " so the shrinkage *seemed* i.e., *FELT*

more dramatic to me, than it was.

6) Pre-UAE I was regularly asked by strangers about my due date. After UAE, I

NEVER had anyone make a comment about my supposed pregnancy.

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***

That said.....

What influenced MY decision to have a myomectomy earlier this year after UAE

was

not about unresolved symptoms per se (although there was one remaining

symptom that UAE had NOT completely resolved: and that was some sensation of

bowel

pressure.)

It was more about signs (and NOT symptoms) that appeared on imaging studies

that made me think about a having a myo.

Follow-up ultrasounds had revealed that the hydronephrosis of my

kidney--first the one kidney, then, the other had initially gone away post

UAE-- but

that reprieve from hydro. was not NOT to be permanent. While this hydro.

problem

was probably mild, it was a cause of concern to me, nonetheless. I had no

symptoms associated with this.

Furthermore, the latest ultrasound on my kidney indicated that there had been

some one-sided kidney shrinkage and something fairly serious called Renal

Artery Stenosis. It wasn't clear what was causing this, but I had a lingering

doubt it might be my still-enlarged uterus, compressing the blood supply of one

of the ureters. (This is only speculation, while the hydronephrosis was indeed

definitely caused by the enlargement of my uterus).

I didn't consider a second UAE, because all of my fibroids appeared " dead "

(calcified) on ultrasound.

Couldn't kill 'em all over again now, (even if I wanted to) Could I !!!?

Additionally, as I mentioned, I have a complex, rather overwhelming medical

history, including an incurable (but treatable) bone marrow condition that make

s me at significant risk for stroke, TIA, and DVT.

Surgery only heightens that risk a hundred -fold. In fact, although my counts

are currently controlled, prior to my myomectomy, I was on an obligatory

short course of chemotherapy to reduce all my counts to a more normal range.

As the years go by, unless there is a cure, this condition will only

worsen., and my surgical risks will increase because of this illness, and the

aging

process, and my overall state of decrepidness as I head into my declining

years!!

ALSO, because of my condition, I have an ENLARGED SPLEEN. As the disease

progresses, there is a strong likelihood that it will only get bigger. We're

talking about growing in the 20 cm. ++ range. This can be painful, and I don't

know how much worse it might feel with my still enlarged uterus, in the years

to come.

Since this same condition can potentially cause unpredictable uncontrollable

bleeding/and or clotting, I also wondered whether at some point in the

future, should I ever really need a myomectomy (or even a hysterectomy), . .

..would

the surgeon --of MY choice-- be unwilling to take me on as a patient due to

this even higher risk situation?

On a more banal level:

I was just terribly weary of monitoring another of my health situations. As

a rule, while I have found some terrific specialists for all of my other

medical problems, I have never been really satisfied with the care/competence of

my

gynecologists.

The prospect of one less condition to concern myself with, and one less

reason to go see a gynecologist--- for was too irresistible to pass up!

So, I took the myomectomy plunge. My gynecologist was reluctant to admit

that my UAE may have made his job easier. But the fact is that UAE decreases the

vascularity of the fibroids. How could this not work towards reducing blood

loss during surgery?

This is undoubtedly more information that you wanted to know. But, it does

underscore the fact that each one of us (and our situation) is as unique any

given snowflake.

By the way, the " swiss cheese " " stretched out " post-myo uterus is nothing

more than a myth--a gynecological urban legend. What competent gyno in his/her

right mind does not resect the uterus after removing the fibroids? Fibroids

do not " gobble up " uterine tissue, (although it may appear that way on

ultrasound!)

For the record, my own uterus is now normal-sized, and, yes, certified

" hole-free! "

Hope this overly-long post was at least somewhat helpful and informative to

you.

Arrivederci,

Roma

--- ARomaWithAView@... wrote:

>

> >Dr. Roma, Medical Dilettante cannot assess your

> >overall situation without

> >specific

> >information about growth. Can you give us a precise

> >idea of how much your

> >fibroids have grown-- and when? How about your other

> >health concerns?

>

> Well, they began in my pelvic area and now are above

> my navel. They seem to be all over the place. Who

> knows, perhaps I could beat your record of, what was

> it 46? :-) My uterus is huge. I don't have the stats

> in front of me, but I believe 14 cm. is my largest

> one.

> And all this growth has been in the past two years.

> And they seem to be getting harder and pressing more.

> Like you, I am huge on research. I went to a medical

> talk the other night and many people asked questions

> afterwards, but when I asked mine, the doc asked if I

> was working toward my medical degree. Anyway, the

> medical talk was on lymphedema and it made me nervous

> to hear her talk about how the pressure from fibroids

> can cause this. The catch-22, of course, is that

> abdominal surgery is a real culprit for lymphedema as

> well. My leg has been experiencing all the symptoms

> she described so I literally feel like I am between a

> rock and a hard place-which is how these fibroids

> feel.

>

> >You seem reluctant to pursue a myomectomy.

>

> I am reluctant to have any kind of surgery or anything

> invasive for that matter. If the UAE worked so well

> for you, why did you have a myo. And did your

> stretched out uterus shrink?

>

> >PS As for the movie about the 23-year old with the

> >unlikely diagnosis of

> >uterine cancer, you and I do have to check it out.

> >We'll have to see if it's a

> >suitable flick for the " First Fibroidian Film

> >Festival!!! "

>

> First, we've got to check out " Under The Tuscan Sun. "

> I met the author when she first wrote her book. It is

> SO not like the movie. The only similarity between

> book and movie is the buying of a villa in Tuscany.

> The situation, the circumstances, her marital status,

> etc. all totally different.

> Ahhh, Hollywood.

> MamaJ

>

>

>