Thank You

[Guest guest]

Many thanks to Cecile, Margo, Rhonda, Faryl, Sydney and

who responded to my post yesterday, and to and Minna

who did so privately. It really helps! And to JenD who has been

my phone buddy and listened as I cried for an hour to her last

night. All of you are the best and the bravest.

I did see Dr. " Tough Love " again for a (brief) consult this

afternoon and my b. f. Marc went with me. I told her that at this

moment in time I couldn't think of hysterectomy unless my

diagnosis was cancer. Just not ready yet and needed a second

opinion. " Yes, you should, it's America " , she agreed, as if I

needed her permission. " But nothing else will work and you'll be

wasting a lot of time, and you'll do the hysterectomy anyway in

the end. " So went the " medical hex " – " If you won't do things my

way, I'll make sure to make you doubt anyone else's

suggestion " .

" You won't be punishing me if you go somewhere else. I can

wear white pants in summer. I can walk out of here and be fine

with it. I don't need more business. (Smile). "

" Well, it isn't about you, though, is it? It's about me, " I reminded

her. " And I'll need my MRI films. "

Marc got her to admit that she didn't know everything and if the

endometrial biopsy turned out normal and all of this was due to

perimenopausal hormonal changes, I could be treated with

Provera and it might stop the bleeding. But she sang the same

song as yesterday that it was useless to hang on to my old

uterus and she would not do anything less than a hyst. She

pooh-poohed UAE/UFE as dangerous because of " deaths " that

had occurred. I know there are risks and no guarantees but a lot

of people here have been helped by this treatment. Whether my

HMO permits it is another matter.

Yes, her manner is repulsive. She's on the best doctors lists

consistently as a gyn oncologist, whose job it is to remove

organs, not save them. As much as I find her offensive, her

suggestion may be the right one for me though I am not ready to

accept that yet. I am DES – exposed, there's cancer in my family

and I may be at risk for keeping the cervix down the line. I spoke

to an older DES specialist on Long Island with Long Island

Jewish Hospital (Burton Krumholz—anyone know him?) who

agreed with her recommendation. But he knows and respects

her opinion and I sensed that he was not going to suggest any

other option even if he met with me.

I have 2 other appts. With other Drs. and one pending but I am

running out of options in my HMO, and am scared that I will have

to endure another flood next weekish with my period. My PCP

prescribed chromagen today, (I got the generic version) but I am

seeing a hematologist on Friday. My ferritin is 22 and my

hemoglobin 8; hematocrit 29.8 as of last week. It'll be higher by

now, but just by a bit from all of the Feosol I've been taking. I saw

one hematologist last week who wanted to start me on IV iron.

These periods are so frightening with the huge clots.

Sometimes it doesn't pay to put a pad on – I'll just sit on the toilet

for an hour or two with a book and a phone. I've been to the ER

for the last 2 periods on an IV for fluids. I don't want to do that

again. I wanted to have had a procedure by now that would have

helped me. Whatever is happening, it's happening fast and that

scares me too. I didn't even know I had fibroids until last year. So

far almost no one admits that my thyroid troubles and this are

related, but I think so.

I feel a lot of discomfort with these fibroids even though they're

not that big. I feel bloated and just feel them in there and have

cramping and a little pain in the last few days. Today I coughed

as I was bending over and was paralyzed by pain from

something – a muscle cramp, I hope and not a fibroid doing

something odd.

I can't believe I'm here at this place. I always wanted to be a

mom but somehow, as Sweeney says – " Oops! I forgot to

have a family! " Somehow my dream got away from me and I

have to deal with the loss of that. It's devastating to realize that I

probably won't ever have a child of my own and that these

problems could come on so suddenly and necessitate such

drastic solutions.

Well, I'm glad that there is a place for me to air all of this. I'd go

crazy without it. Thanks to everyone for reading and who took the

time to respond and support me. I hope that I can do the same

for another some day.

Hugs to all--

Jan