Re: New member - my story

From: DT (DT2005@comcast.net)
Mon May 9 18:14:22 2005


Hi Rachel,

I am 39 and have been in chronic pain for more than a decade also. I understand how you feel and it is difficult enough for family to understand, let alone try to keep friends. Unless one of them has the same condition after awhile they all get a little tired of hearing that you "don't feel that great" and have to go home early or can't go out tonight.

I know many spouses get tired of hearing the same thing - no matter how much they love you after awhile its almost like they forget that you have CHRONIC pain and suddenly want you to be better or just forget that you are in pain completely and act as though you are out of your mind when you say something about it.

I am concerned about your surgeries although I am also happy for you that you are actually able to have laparoscopies still and get some relief from them.

I am no longer able to have them because the surgeon's can no longer get instruments in safely - the scar tissue has blocked off all the area and they can't see their way in. As a result, unless it is an emergency I really cannot have another operation because I have had too may laparotomies.

A lot of the problems that I had early on were a result of polycystic ovaries and endometriosis. My gnyo's would not take out my ovaries despite repeated cysts that ruptured and caused infections. I have always believed that if one Dr. along the way early on would have given me a hysto I would have been much better off.

I looked up all the information and tried to take charge of my healthcare, but got the brushoff anyway so many times by Dr.s who insisted they knew better. 17 surgeries in 12 years later and here I am. Last year I had to have gall blader surgery because of a ton of gallstones and the incision had to be extended to 10" just to find a clear(er) path in. My recovery took nearly 8 months. This was for a simple operation.

I am scared now because the way my disease has been progressing, I generally only get about 2years before the adhesions grow so much they block off everything. I am about 2years out from the last time they were cut down and the only reason my surgeon agreed to take them down was because I lost 50lbs in about 14 weeks. At the same time my stomach got so big I looked 6 months pregnant. (The Dr.'s thought I had tropical disease at one point.) There was no choice and recover from that took nearly a year.

I haven't started to lose weight yet but my stomach is growing out again.

I have no idea what will happen but I'm putting off surgery for as long as possible.

After all this, I don't want you to think that I am knocking you for having so many surgeries. I am certainly not. Each one of us has to make the best decisions based on our own bodies - and as I said earlier I am glad that you still get relief. I hope that your new Dr. works out well...she sounds wonderful wanting to read your full chart. I wish you the best and hope that someday we will all be lucky enough to have an asnwer to our problems. I work full time also - and I volunteer with two organizations. As much pain as I have - the volunteer work helps keep me going even when I would rather be in bed.

The best advice I can give right now is don't give up. Ever. I wish you the best. DT


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