Re: ADHESIONS digest 1769
From: Chris936963@aol.com
Wed Jan 30 05:35:22 2002
Hi All:
I've been reading the boards and have to say you are a wonderfully supportive
group of people!
I've had chronic intractable pain from adhesions, endometriosis & multiple
surgeries for the past 19+ years now. I have scarring throughout my pelvis,
including scarring of the R Femoral nerve, the R & L Sciatic nerves, and on
other nerves as well. The endometriosis has spread into the uterine wall,
bladder, bowels & intestine. Additional surgery is out of the question
(thank God!).
Bless all of you who know first hand what I endure daily. May we all be
cured SOON! For me, the unbearable pain began with complications from a
miscarriage -- a ruptured ovarian cyst. I bled internally for 3 weeks before
Kaiser was able to diagnose me. Then I was rushed into emergency surgery. I
never felt well again. I've gotten worse over the years, and multiple
surgeries even caused my fallopian tubes to become gangrenous. Even then,
the Drs. told me "there's nothing wrong with you. The discomfort you feel is
all in your head", etc. Again, I nearly died from the gangrene, by the time
it was diagnosed. The surgeon told me (afterwards) that in over 30 years of
practice he'd never seen a worse pelvis. It was an extensive mass of
adhesions.
I have three questions, and also welcome any one who wants to write to me.
I'm near the end of my rope and things are about to get worse.
First, I need a referral to a pain specialist in the Northern California
area. Specifically, if possible, in Oakland.
I don't have medical insurance, or Medicare/medical, so have been forced to
go to the county hospital when I need emergency treatment. The head of GYN
has no treatment plan for me at this point (I was unable to tolerate Lupron -
it caused severe depression), and the hospital has no pain control clinic or
specialists. The last thing the Dr. said to me was "what do you want me to
do?". Not helpful.
The Dr. who has been treating me for pain for the past 10 years has told me
he's going to "get me off the pain meds". I'm taking codeine and xanax, as
the combo increases the efficiency of each, so I take a lower dose than if I
took only one or the other. I also take Elavil (100mg @ night, to help me
sleep & increase my pain tolerance), and Wellbutrin (I know the Rx are not
supposed to be taken together, but for now I have to (long story).
Wellbutrin is the first antidepressant I've taken that actually improves my
mood. The side effect (of the Wellbutrin) is that of feeling like I've been
smoking crack, I get so shaky, nervous, speedy & unable to sleep for days at
a time. I also have to take Sythnthroid, Triamiterene (a diuretic -- the
pain is worse if I have edema), Ibuprofen, acylovir & pyridium. I'm allergic
to latex, sulfa & some other Rx.
Second, have any of you woken up during surgery? I have. Three times. The
last time (during a Laparotomy) was the worst, as I could see, hear and FEEL
EVERYTHING that was going on. The only way I was able to alert the Drs. was
via my vital signs. The anesthesiologist was talking with the surgeon & not
paying attention to his work. It was hell. I still have nightmares, and it
happened over 10 years ago. I'm interested in hearing your experiences -- I
hope no one has anything to report, but I imagine there are others like me
out there.
And, thirdly, what pain meeds work for you? I may have to suggest Rx to my
Dr., until I can find another, more appropriate Dr.
Thank you all for your time and support. Take care,
Chris
(chris3663@aol.com, or chris 36963@hotmail.com)
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