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Re: Endometriosis and pain management choices -my story
From: anonymous (anonymous@obgyn.net)
Thu Oct 31 15:41:38 2002
At Thu, 31 Oct 2002, Ilene wrote:
>Hello I was happy to read your story, I have had endo for 14 years and my new doc has suggested a hysto. and of course I don't want it! He says he can not give me anymore pain killers and there is nothing left to do, did the lupron,had 4 laps, did the hormones, which gave me a blood clot and a pulmary embolisum and 4 days in the ICU. So now after I get the hysto I can never take another hormone. I do have 2 children but would like to convince my husband for one more. My doc has given me to December to schedule my hysto. I am now going to look for another doc to see about the B12 shots. Thank you!!!!!!!!
>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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