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About endo info and research.....From: PennyDoll (anonymous@obgyn.net)Tue Aug 8 09:00:44 2006
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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