Re: Endometriosis and pain management choices -my story
From: anonymous (anonymous@obgyn.net)
Thu Oct 31 20:16:37 2002
To anonymous who responded to MY STORY, I wish you luck in finding
a new doctor, and one who will listen to what YOU want and how YOU
want to approach your disease. It is YOUR body after all. Take care,
and
please don't let your present doctor bully you into anything you are not
ready
to do. Once a hyst is done you can never take it back. And there are
no
guarantees of pain relief with a hyst. I think it is dispicable that he
will
not give any further pain medication and has given you a deadline for
your hyst. Just do what you feel is right for you, don't feel pressured
into anything. I have felt that pressure in the past and finally I
decided NO WAY I am gonna look and read and research and ask and seek
for every little tid bit of info and find a doctor that will help me and
listen to me. I don't know what the future holds, but for now I am
surviving and better than I was 2 years ago, after my 2nd lap, so go
figure.
Another thing you might want to have checked is your blood glucose
levels. I found out mine were dangerously low, from a senstivity to
sugar. When your blood glucose levels are low (hypoglycemia) your
immune system does not work properly and is weakened, allowing for
disorders to run rampant. I totally cut out sugar out of my diet and
that seems have helped as well. I know it has, becuz accasionally I
forget and start indulging in all kind of sweet things and next thing
you know I'm feeling lousy, weak, tired, sweaty AND my endo starts
acting up again. So definatly I feel endo sufferers need to pay
attention more to their overall health, in order to keep their bodies
strong and to have the strenth to fight this disease. I think I have
accepted the fact that endo is a lot like cancer just not as deadly, but
just a crippling and misunderstood. The difference between the two is
when someone tell another they have cancer people say Oh god that's so
terrible, but if you tell someone you have endo they look at you
puzzled. When you try to explain they say Oh you have bad cramps. Yeah
thats right cramps!! and that's the bloody least of it. People just
can't imagine the whole realm of how this disease effects SO much. Again
take care, and keep me posted on how your doing. Next time could you
give a name so I know who's talking to me. Thanks
Ilene.
At Thu, 31 Oct 2002, anonymous 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!!!!!!!!
>At Thu, 31 Oct 2002, Ilene wrote:
>>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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