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Endometriosis and pain management choices -my storyFrom: Ilene (anonymous@obgyn.net)Thu Oct 31 12:14:49 2002
This is quite a long message but I wanted to share my story with those who may be interested. You may choose to read it or not. If any anything this is a type of therapy, to tell my story and maybe help someone else. I have been reading many of the messages posted on this site. My heart breaks for all of you who are suffering as I am. With 4th stage at 33 with no children, two surgeries later and the prognosis of total hysterectomy I am fighting that decision all the way. I hope any women who is considering a hysterectomy would do more research before coming to that decision. I have heard so much about the disease coming back in women after a hysterectomy, whether they keep their ovaries or have them removed and then go on HRT afterwards. As they say the disease is estrogen dependant. I personally have opted to find other options. I refuse to have a hyst I feel it is the easy way out for the doctors, that way they don't have to look at other ways of treating this difficult and misunderstood disease. Please no one take offense of this I don't mean to hurt or upset anyone. I don't judge any of you for the decisions that you make. I am simply stating my PERSONAL feeling about the treatments offered to women. As for pain managment, I feel the key is to find a doctor who IS sympathic to your condition. I don't care what kind of the doctor they are, if they are sympathetic to your condition and understand it they will be more apt to help you, instead of brushing you off. Myself, I still have rough days, more than I'd like to have thats for sure. But I have found a wonderful general practioner who have helped my immensly - more that the gynycoligist I had that did my 2 laps. Basically his attitude was, there is nothing more I can do for you, get a hysterectomy or go on lupron or one of the other drug therapies offered. Some of the drug therapies offered pack a wallop of side affects as well. The general practioner I have, looked at my body as a whole, not just focusing on the one area. First of all, I agree that the immune system plays a huge role in endo, along with other contributing factors such a genetics and pollution. Boosting ones immune system can help fight this disease, or at least possibly help keep it somewhat under control. B12 is a vitamin that help boost the immune system. I recieved vitamin B12 injection every 2 weeks, and I swear that when I miss my shot, guaranteed, by the third or fourth week without it, everything in my pelvic area starts to go crazy. The pain becomes far more chronic and overall feel terrible. If I keep up with my shots, I do find a reduction in pain. Not to say that the B12 is a cure all, I just find that it does take the edge off of this disease. When I do suffer pain, generally my pain seems to be like burning spasms. I have found that I was taking SO much pain killers to calm down the spasms that my stomach ended up in pain because I think the pain killers were burning a hole in my stomach. I discussed this wth my GP doctor and explained to him what my pain was like. In the end we have found that clonazipam and simple advil helps my pain immensly. The clonazipan helps to ease the spasms and the advil calms the inflammation. Clonazipan is a relaxer and is very easy on the stomach. I only have to take 1/4- 1/2 of a 2 mg pill to ease my pain. When I have a full blown incapacitating attact I take a whole one - which totally knockes me out - so forget going to work on those days. But I can function pretty good with just a 1/4 of one and a couple advils, I'm a little sleepy and relaxed, but at least I can go to work. And hey I don't get quite as stressed at work when things get hairy because "HEY!!! I'm on good drugs"!! hee hee. You gotta keep your sense of humour. Which is easy today, becuz today is a GOOD day! While it IS a really frustrating disease to deal with and maddening that there isn't more answers or help out there for us, I think if we keep reaching out to each other we can help one another cope with this disease. Arm yourself ladies with knowledge, because knowledge IS POWER!! And when I am have a really bad day or bad 2 weeks of pain everyday I do get depressed and mad and frustrated. I think we are all entitled to those days and those feelings. I pray for more understanding of this disease in the world, from our doctors, families, friends and coworkers. I think that is the most of frustration of this is that WE DO SUFFER and many people just don't understand how much. Prayers to all of you.
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