Endometriosis....part 2

Discussion in 'Fibromyalgia Main Forum' started by 2BPainfree, Jan 16, 2003.

  1. 2BPainfree

    2BPainfree New Member

    Thanks to all of you who answered my original post.
    Lin.....I would really like to get the name of your Doctor!

    I have had surgery 5 times.(every 8 months to a year) I will be going in next week for yet another laparoscopy. (GYN/ONC) seems to think the pain is coming from adhesions (last time everthing in my pelvis including my colon was stuck to my bladder!).......I'm not sure what to do. He mentioned if he sees more Endo he will just "Burn it off" welllll....I know only too well from experiance "burning" or what they called laser ablation is NOT good enough for severe endo. I told him so (ha!) he said "your probably right...." like he had to think about it for a minute..."well, if it's deep we'll get it"

    Sheesh...he is suppose to the "best" because he is an Oncologist and can "see" microscopic disease. Sorry guys, don't mean to keep talking about Me, me, me (I do try to answer other peoples posts, LOL!) I am just questioning myself....wondering how or if I could find someone better, or just be confident in this Doc.

    Tough one, Huh?!

    Thanks for listening to me blabber....no one else wants to hear it....or....offer ideas.

    Susan B

    SOooooooo tired of having surgery....as is My family/HUSBAND!
    [This Message was Edited on 01/16/2003]
  2. karen55

    karen55 New Member

    I had endometriosis and had several surgeries for it. The problem with recurrent surgeries is that you keep getting more adhesions or scar tissue from each one, so you get caught in that viscious cycle. I ended up having a hysterectomy in 1995 and I STILL had endo 3-4 months later. I changed doctors at that point. The new doctor took me off of my female hormones completely and put me on some male hormones for several months. I felt like hell and was very depressed and miserable, but finally, after all of that, was free of endo and was able to start my female hormones again. And I would love to say that everything's been fine since then, BUT I am seeing an endocrinologist next week as advised by my rheumy for some specific testing, which includes some hormone tests. So it may be that what finally got rid of the endo for me has actually, in some way, had something to do with everything I'm now going through with the FMS/CFS.

    Dont have any advice for you, but I certainly wish you luck.

  3. lin21

    lin21 New Member

    Hi Susan,

    I sent you all the information in an e-mail.
  4. pamj

    pamj New Member

    I have had 3 surgeries (and almost a 4th, also to be done by a highly recommended Oncologist), each about a year & a half apart, and I've been through the Lupron treatment twice. I have found that the best treatment for me is taking the birth control pill continuously.

    Are you able to tolerate any of the birth control pills? I had to try several different ones, but it was worth the trouble. I don't go off them for a week each month to get a period, I just take them every single day & I haven't had a period in about 4 years now. I'm 37 years old & I now do not have any endo symptoms at all, no pain, no bloating, no more scarring/adhesions, and it's great having no periods.

    It does get scary once you've had more than a couple of surgeries, cause the scarring does start to worsen each time. I'd be extremely cautious of the idea of a hysterectomy! I've been told (and I've read a lot on my own) by many specialists that a hysterectomy does NOT end the problems with endo. If you have any other questions regarding that issue, I'd be happy to share any info I have.

    take care,
  5. lin21

    lin21 New Member

    Hi Pam---

    Here's more information you may find helpful
    All the Doctors I had seen up until and after my diagnosis handed out birth control pills like they were candy, they think they cure everything. After my last and final laparascope and my daughter's birth the endo returned with a vengence, so the Doctor started me on Depo Provera shots which is also used for birth control. I lived on them for almost 8 months until my body built up immunity to it and all my symptoms returned. My last and final choice was a hysterectomy because of the severity of my case.
    I was also on Lupron for a time in the beginning when I was first diagnosed and the side effects I was experiencing weren't worth it.
  6. 2BPainfree

    2BPainfree New Member

    Birth control or even many hormones. I've already had a total hysterectomy, I'm 38 yrs old (have 2 boys 11 & 15)
    I never went the Lupron route because I had heard of all the neg side effects....couldn't tolerate any more fatigue!
    Now I'm glad I didn't, sounds like it very toxic.

    Well...It will be interesting to see what the lap next week shows...I just hope that will be it, I want to be done with surgery's!!

    Tonight I have been doubled over in pain. I don't understand how these Docs say, "just take your pain meds"
    I WANT RELIEF NOW! You would think they would fit me in ASAP. I have taken percocet dose:10/625 (thats like taking 2 percocet at a time) It just takes the edge off. Must be working some cause here I am typing.

    Thanks guys for the info. Lin I did get your message, thank you! I will try to post back tomorrow.

    Susan B