New Member - Same Problems

[Guest guest]

Hi everyone -

I'm a returning member of the group. I've had 2 laproscopic

myomectomies (97 at Kaiser Permanente...another nightmare

story...took me a YEAR and passing out in the hospital with a

hematocrit of 13 to be diagnosed and 02)and a blood transfusion

(before the 97 surgery), and am on my way to a possible 3rd surgery.

This go round started with killer pain back in November. I switched

to a new gyn ( in Largo, MD) who ran tests (Prolactin

and CA-125) and sent me for a sono. Sono came back with the return of

the fibroids after only 2 years and an elevated CA-125 of 77.3. She

immediately refers me to an oncologist, ( Cosin at Washington

Hospital Center). Cosin sends me for ANOTHER sono and tells me to

come back...in the meantime I should do a pain diary and take Motrin.

He does not re-run the CA-125 and tells me it's probably

endometriosis along with my fibroids. He says after the sono, we'll

talk about surgery options.

I get another sono and go back to Cosin mid Feb. His resident comes

in and asks me why I'm here. I tell him that Cosin sent me for

another sono and I'm following up on that to discuss options. He

thens says that " Well, we pretty much KNOW you've probably got

endometriosis and why would you want to go through another

surgery...the answer is for you to just have a baby! " After I pick my

face off the floor and compose myself, I ask for copies of everything

in my chart and schedule a second opinion appointment. I then go to

another ob-gyn (Alice McKnight, andria VA), results in hand and

ready to talk about how stop all this pain. Mind you it's now almost

March and my periods and ovulation are becoming more ridiculously

painful each month. I have about a week when I feel no pain. Over

Christmas and Thanksgiving, I was medicating with anti-inflam's and

Chardonnay. Nothing worked.

McKnight looks over my paperwork and says she can't touch me b/c

cancer has not been denifitively ruled out. She at least empathizes

with me about my run around, but promises to refer me to a GOOD gyn

oncologist that their office works with often. She refers me and

gives me a Rx for Vioxx, which for real is not real working all that

much for my pain. I go to Dr. Frederick Helmkamp that next Monday,

having been lucky to get an appointment so quickly. (I made it

Friday ..2 days before). Dr. Helmkamp and his nurse Reagan were

actually GREAT, took the time to sit down with me before and after

the exam to discuss my history and what options were available for

me. He re-ran the CA-125 and did a CBC. He also referred me for a

hysterosono, which I got done 3 days later. By Friday, he had left me

a message with all my results (which THOROUGHLY IMPRESSED ME that HE

CALLED HIMSELF, not a nurse). He states that he doesn't think it's

cancer since the CA-125 only went up from 77.3 in December to 78 now,

but feels comfortable with referring me back to McKnight for surgery

and/or medication therapy via BCP's.

The largest fibroid I have now is 9cm and is pedunculated. I can feel

it when I button up pants and it is painful to wear belts because of

the pain. Dr. Helmkamp says that it may not be able to be

laproscopically removed and feels I may need abdomiminal myomectomy

this go round. I am trying to get a follow up with McKnight, but I

also have a 3rd opinion appointment scheduled with

(also in andria VA) that I scheduled about a month ago before I

was referred to McKnight. McKnight's schedule is looking like it's

booked (she is one of those popular gyn's in this area and may not

have a spot until the end of April) and I don't want to have to

endure another month of pain that makes me want to roll over and die.

From reading Carla's book and so much other stuff on the importance

of maintaining your own records, I have all of my current copies of

tests and doctor's notes. I am trying to get copies of the Kaiser

records and the records from my last ob-gyn.

My questions are:

1) Should I wait McKnight out or keep the appointment this Friday

with the 3rd opinion dr. so she can look at all the records for the

past 4-5 months and either help me find a quicker solution or send me

back to McKnight?

2) With pedunculated fibroids, is abdominal surgery the best way to

go?

3)Is there still a possibility I could have endo, which would explain

the pain and possible the dymenorrhea (I bleed for about 1-2 days and

it looks like breakthrough bleeding, but the PAIN...LORD!)

Sorry for the book, everyone!

Kim M.