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Post by laurenv on Jun 23, 2005 12:25:30 GMT -5
does anyone elses ever feel like it seems like they have tried everything that they can do and nothing seems to work for the pain?
i found out i had endo. when i was 13. it didn't really mean anything to me other than when i had my period i was in a world of pain. i did have some treatments when i was younger that seemed to help with the pain. but now as i've gotten older it seems that nothing can be done to stop it.
i've been lucky enough that one of my best friends is cursed with it as well so we have been eachothers support most of the time, but we have both gotten to the point where the physical and emotional pain is almost to much.
i guess i'm just venting. i don't really know.
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Post by sallie on Jun 23, 2005 19:19:45 GMT -5
Im with you on the pain I have just about given up on anything working to help the pain. I had a hysterectomy last June and now Im taking the Lupron shots for six months. I have had one and here in about a week it will be time for another and I havent seen any help yet! I was hoping it would work so my overies can stay in but Im wondering now. The only thing happening to me is my hot flashes are more and my hair is falling out. I just pray they will work next month! I really want to feel better!!!
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Post by Heather on Jun 27, 2005 10:53:26 GMT -5
I was just wanting to make sure I'm understanding you correclty. You had a hysterectomy a year ago and you still have symptoms? I have tried all the different types of hormones and all the diets, had 4 laproscopic surgeries and I can't get relief. My husband is really pushing me to have a husterectomy.
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Post by sallie on Jun 27, 2005 17:14:12 GMT -5
Yes, but she didnt take my overies and it had came back.
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Post by endomaster on Oct 19, 2005 7:35:38 GMT -5
Just so everone knows, I had a hysterectomy, the doc took EVERYTHING except my cervix, and I still suffer from endometriosis. I am in a lot of pain...always in my lower left abdomen. I guess once you have the surgery, the endo could have already gone elsewhere, and is stuck there. So, hysterectomy or not, you can still suffer.
Has anyone else seen this happen?
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Post by Nan B on Oct 28, 2005 10:00:05 GMT -5
I can't say I know from personal experience as I haven't had a hysterectomy, but from all the research I've done (and I've done a ton of it over the years), having a hysterectomy doesn't necessarily "cure" you of endo, so you're right, endomaster, that you can still suffer. Ain't doctors wonderful?
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Post by Nan B on Oct 28, 2005 10:06:35 GMT -5
Actually, my prior post wasn't that long...I was going to make it longer, but I didn't think what I originally typed in was pertinant to this thread. Sorry about that...
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Post by Katie on Jun 9, 2006 10:35:15 GMT -5
I had a hysterectomy (only cervix was left in) 5 months ago and am right back to the same horrible endo pain. My problem now is that I can't find a doctor who is willing to even look inside me again and treat possible endo, because they all say "no ovaries...no endo"; despite the fact that my surgical ob/gyn admits to leaving me full of endo because "it was the worse case she'd ever seen and couldn't begin to get it all." Unbelievably frustrating. I have an appointment next week with a new ob/gyn out of a woman's hospital; hopefully this will be different - as it will be my 4th opinion!
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Post by ouchy on Jun 9, 2006 11:13:30 GMT -5
Hi, Katie. Since your old obgyn who performed the surgery said that there is still endo inside, could she have another look? Maybe she'd have better luck this time? Or get it in writing from her that she left endo inside? If you feel uncomfortable asking her to write a letter, just get your operative report from the surgery. It should state that there was endo left due to not being able to remove it. Maybe even some photos. You could take that to another doc to prove that there is endo left.
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Post by Katie on Jun 12, 2006 8:35:22 GMT -5
Ouchy: I don't want anything to do with my surgeon anymore. Her nurse practitioner admitted that the DR dropped the ball with me. She's admitted and I have the records to show that she left me full of endo. The problem with her and the other doctors is that they all seem to believe that, even if left full of endo at the time of a hyster, if the ovaries are taken the endo has nothing to feed on and, therefore, dies off. That's why my surgeon had no hesitation in leaving the endo inside. I've learned, however, through research over the past 4 months or so that this is absolutely FALSE. Now I just have to prove it to a doctor. One of the alternate opinions I've had diagnosed my pain as adhesions not endo. Bear in mind, however, that she did this without looking inside, which is the ONLY way to diagnose either endo or adhesions. I'm hoping to get a doctor to agree to a lap for purposes of getting an accurate diagnosis, as well as a doctor who will treat my pain and not just tell me it's all in my head.
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Post by erzulie on Jun 12, 2006 10:08:08 GMT -5
<sigh> Doesn't it drive you crazy that you know more about this disease than the DOCTORS know? I hate it. What is it about this disease that doctors never know anything about it?
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Post by ouchy on Jun 12, 2006 11:08:40 GMT -5
They call endometriosis patches "adhesions." I believe endometriosis and "adhesions" are used interchangeably. Best of luck with everything!!! Yah. I agree time to find a new doc!!! Wow. Doesn't it suck that we have to go through all this crap w/ docs??? I think every OBGYN should have to have a rotation dealing w/ nothing but gynecologic pathologies!!!
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