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 (firstname.lastname@example.org, or chris email@example.com)