Re: About endo info and research.....
From: Audrey (anonymous@obgyn.net)
Thu Aug 10 19:42:35 2006
Kris,
What do you feel is the most informative site for Endometrosis,
laprascopy and Lupron treatment?
Thanks,
AB
At Tue, 8 Aug 2006, PennyDoll wrote:
>
>To those of you who are new, I thought I would offer my 2cents about
>info. After years of pain, and no doctor believing me, I found I had
>stage 5 endo spread from top to bottom front to back. That was just
>last January 21, 05. I had cysts burst, ER stays, and surgery for total
>removal of my left side since all my repro organs were enveloped in a
>large mass. Looked like a jumbo grapefruit, and couldn't see any
>organs, just mass. So within no time, and just turning 22 I had a major
>surgery, and told almost all my insides are stuck like glue. I was at a
>clinic at the time due to no insurance from moving, and they didn't like
>to deal with me or my case. They didn't believe in pain relief either.
>I actually had one doctor tell me that percocets should only be used on
>dieing cancer patients for pain!!! Finally in June, (after 2 more laps
>by that awful place) I got a wonderful Dr. I had more surgeries, but he
>also realized the pain from the endo, surgeries, etc. He worked with me
>very closely. Even tho I'm "so young to be on any narcotics" as 99%
>say, he understood. There were points where he would joke I was on
>enough meds to knock out a horse or a man 3 x's my size. (Since i'm
>only 5'5" and 105lbs.) Finally after playin with all the pills, I went
>to the patch. I bless that thing and hold it in high reguards. But
>ever since I had Dr's who don't believe me, help, or are just naive, I
>did my own work. I have a folder of endo info from beginning to end.
>Slight to severe, and all types of stories. I'm actually working on a
>intensive website for a large mass of info to be in one place, chat
>rooms, support, etc. Just taking a while. But what I found out is that
>you can research every med book, document, story, and to the end of the
>web and find every piece of information there is, but it still doesnt
>answer alot. I've realized it can help, but in the end each case is
>different and you must apply what you know, try new things, and what
>works for you. There's a zillion different things. And how complex
>this disease is, and how little is known or done to find ways to stop or
>help it doesn't help. Until then, do your homework. Make a folder,
>cards, references, etc. I have tons. Some useless, some helps. I
>think this forum is the best thing. It actually gives you the chance to
>talk to others who may be in the same boat. Not just a text story. And
>learn from their experience.
>
>Lastly, push to find a good Dr. Every day I ask myself if I had pushed
>harder for the years and years I was in pain, would they of found it
>when it was minute and able to do something earlier to help save my
>organs, and the inside of my cavity that is now a spiders web of glue?
>But there is no answer. And I have lots more to go through. And even
>with a full hysterectomy and cervix removal, will I lose it physically
>and mentally...knowing I may still have to deal with this obsurd battle
>the rest of my life due to Dr's saying "You're too young!" It's ravaging
>and does put alot into your life, or should I say take away. And alot
>of people don't know about it, and don't understand. So find a good
>support, you'll need it! If nobody gets you, come here......it's
>absolutely wonderful. I've been on here almost since the beginning
>(Last april I guess.) off and on, and it really helps. Plus u can ask
>and question your heart desires, and it's ok!! Good luck to all.
>
>--
>PennyDoll27@aol.com
>Kris
>
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