Re: ADHESIONS digest 1769

From: Lisa (lilylover5555@aol.com)
Wed Jan 30 14:23:06 2002

At Wed, 30 Jan 2002, Chris936963@aol.com wrote: >
>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)

Chris- I didn't wake up during surgery, but during one of my c-sections I was awake, and the epidural wore off and I could feel everything! It was horrible and it seemed to take forever to get more pain killers in my system, so that I was numb again. 

--
Lisa

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