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I don't know where to go from here I don't know where to go from here

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Unread 10-05-2003, 07:28 AM
I don't know where to go from here

Good Morning to All,

I really don't know where to begin because I am so frustrated. Every doctor I have been to look at me like I'm crazy. Maybe my pain is all in my head. I am 1 year + 2 weeks post-op and I still feel like I did before the surgery. It is so painful to move or walk. I have had an MRI, CT-scan, ultrasound, and an obstruction series X-Ray. The doctors never get back to me, so I am assuming that nothing was found. I have the report on the first 2 tests, but I have to pay to get the report on the other 2. I just don't have the money. When the doctors examine me and they push on the spot where the pain is they can see from my expression that something is wrong. The ultrasound tech almost laughed when she looked at the screen. She said, " there is no ovary, so there is no cyst!! " The pain is just to the left of the incision. It is causing so much painful pulling and burning. Now I have been diagnosed with diabetes, which has caused a very bad yeast infection. I don't know why the doctors here won't help. They keep talking about going to Pain Management. I tried that once. The injection (which contained steroids) only lasted 2 hours. I really don't have the money (co-pay) to keep going for only 2 hours. Does anyone have any idea as to what it could be? I really would like to have some idea that I can tell my doctor to look for. I am really at the end of my rope. Thanks in advance.
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Unread 10-05-2003, 07:49 AM
I don't know where to go from here

Hi Deb,

I am so sorry you are having such trouble getting your pain resolved.

I don't have many ideas for you... I am going on 13 years now of pelvic pain and am investigating a possible presacral neurectomy now.

You might want to give the pain management idea more time. Not just for the shots but for the medical therapy. If you have nerve damage they may prescribe drugs to help with that (like Elavil, Neurontin and Klonopin)... or they may have some better ideas for how to control your pain in general.

I went to Pain management and the doctor gave me two nerve blocks at the presacral nerve. It helped quite a bit for several hours. Since it didn't last I am going to look into actually having that nerve cut. Sometimes the nerve blocks can have longer lasting relief after they are done 2 or 3 times.... sort of like rebooting your PC.

You could have adhesions causing the pain. Those can only be seen with surgery (is my understanding anyway). You don't mention why you had the hyst or if you had endo... it can always show up again, especially if you still have an ovary or are taking HRT.

I know all this is expensive. That is the troubling part. I have traveled across the country and been to a pelvic pain specialist. I found his name on the International Pelvic Pain web page. He helped quite a bit and performed a conscious pain mapping on me which identified exactly where my worst pain was coming from. That was back in 1999. The web page is www.pelvicpain.org
They have a list of members by state... perhaps there is someone near you who may be a resource.

Pelvic pain is a very frustrating condition for both the patient and the doctor. It can be very difficult to identify the cause and find relief. Perhaps you need to check into some other doctors... and I also think finding a compassionate pain mgt doctor is also a good idea. I have also found pain mgt counseling very helpful in learning how to cope (This is not to imply any of it is "in your head" or was in my head!!)... it was just very helpful in changing my attitude about the problem and coping more constructively with the problem.

I hope that helps some. Keep us posted on what you find out and if you find any relief.

Many s


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