Please respond!! ?? on Endometriosis/Hysterectomy

Discussion in 'Fibromyalgia Main Forum' started by tandy, Sep 22, 2005.

  1. tandy

    tandy New Member

    Hi ladies~
    I'm hoping someone here can shed some light on something extremely important.
    For those who don't know me here,..I've had Endo for 8 yrs and have had 1 DX Lap,and 2 "clean out' Lap. surgerys
    over the yrs. Well, symptoms are very bad again and even with Depo shots I'm bleeding(tho not heavy)
    and having HORRIBLE IBS/bowel troubles.
    My gyno highly sugests a Hysterectomy but I'm not so sure that that would end my pains?? If the endo is all over my colon and areasthat are too hard to excise/lazer off
    (which is the case) then taking all my female parts is'nt gonna solv my endo problems would it??

    I went to a few sites about hysterectomys and just read,read read!! and sure... many have had a successful outcome as for the Hyster.
    BUT,..there are just as many woman out there that were not helped after a hysterectomy!! They've had suregrys since there Hyster.,for reaccuring Endo on other organs!!
    I just wanna know if you have endo,..would you be very hesitant like I am??
    God! if I go thru a major surgery like this and still have bowel pains,stomach pains,etc
    I'm just really wanna know what I'm doing is right.
    and I'm very un-easy about this whole hysterectomy thing!!
    Don't ya think since I'm having so much bowel trouble I should FIRST have a colonoscopy?
    anyone,any thoughts or suggestions? please.
    hugs and thanks
  2. tandy

    tandy New Member

    I'm jumping over there right now~
    I have 15 minutes to spare before Mother chores of getting the kids to bed.
    I'll post agin tomorrow :)
  3. victoria

    victoria New Member

    I was dx'd with sever endo 23 years ago, and after a 6 month protocol of birth control pills, I followed a very strict candida diet; Candida was a 'new' dx then, and I was desperate as I wanted to have kids and didn't want a hysterectomy or to take any of the 'usual' rx drugs, side effects sounded horrible.

    The candida diet helped immensely with pain symptoms, never again had the cramping where I was rollling on the floor. And I went on to have 2 kids. I'll have to say the endo pain was far worse than labor pains or any other kind of pain I've ever had. I also found any mold or yeast food would cause endo reactions (pain).

    While I did get such a huge reduction in symptoms, ie, when I was very strict I had NONE, about 10 years ago I had abdominal pain and was dx'd with an ovarian cyst; had laparascopy again, and altho cyst had disappeared by then, I had them laser out as much endo as possible, I was still dx'd as severe. They (MDs) suggested hysterectomy at this point, but I didn't do it, as I knew it didn't necessarily help.

    However, I have never had to take any hormones or anything else. i've now gone thru menopause, still don't have any problems at 54, but still have to avoid mold/yeast foods and over consumption of sugar, altho I'm not as strict as I used to be. (Altho I really think I should be, and working toward that goal again)

    I know it's hard to do this, but the Endo Assoc. took a poll once, and it was found that the candida diet had THE best response regarding cessation of symptoms, altho somehow it remains and doesn't dry up/disappear.

    I know someone who had to walk with a walker at 20 years of age, while she had severe endo she also had seemingly unrelated pain in her thighs, used to not be able to get out of bed at times. When she tried the candida diet, it all cleared up, she could walk normally without the walker and was pain-free!

    Give it some serious thought, you have nothing to lose by doing it, it is probably one of the cheapest possible solutions!

    But once you do decide to do it, please also find a knowledgeable MD who can prescribe either nystatin or diflucan... just don't take those RXs without doing the diet.

    Natural antifungals are good too, check them out at the HF store, like grapefruit seed, etc; BUT again, don't take them unless you are also complying with the diet strictly, as the yeast can take different forms and you don't want to feed them. And take a lot of probiotics. Lots of books out there, the classic is by William Crook, MD, he wrote several.

    Hope this helps!

    [This Message was Edited on 09/22/2005]
  4. JLH

    JLH New Member

    My daughter had to have a hysterectomy when she was 31 because of her endo.

    She had to have a total hysterectomy because of it, and could NOT have a vaginal hysterectomy. She had to have the type with the incision so that the doc could see inside and make sure he got all of her endo.

    He did. Her surgery was a success and she is glad that she had it.

  5. CanBrit

    CanBrit Member

    From my mid twenties until I was 34, I suffered with terrible cramps and heaving bleeding. The main cause was seven large fibroids in my uterus.

    When they performed the hysterectomy, they discovered I also had severe endo which had attached itself to all my inner organs. The Dr cleaned up as best as he could but I ended up losing one of my ovaries as well.

    I'm now 49 and have had the pleasure of no periods for 15 years. I coudn't have a vaginal one due to the size of the fibroids but after a week or so, I was feeling pretty good. I still had to take six weeks off work but I wasn't complaining!

    I still have IBS, but I didn't expect that to change.
    I had several barium enema's done in the past, and nothing showed up. In two weeks I have my first colonoscopy. Yeah!

    Sorry, I'm being long-winded. If I were you, I'd go for it.

  6. EllenComstock

    EllenComstock New Member

    I really feel for you. At one point my doctor tried to get me to have a hysterectomy. I really didn't want to have one since I have heard that this doesn't always take care of the endo, especially if you have endo in other places other than the female organs.

    Have you gotten a second opinion? My husband took me to a specialist at the Cleveland Clinic. I took the photos from my last laparascopy with me and he determined that my endo is at a stage one not a stage three as the other doctor told me. I have more problems with the FMS than endo now. This doctor said that half of his time is spent telling women they don't need a hysterectomy. Also, someone who specializes in endometriosis may be able to remove some of the endo even if the more difficult areas.

    I was so glad that I got that second opinion. I was in such a turmoil as you are now. But it does sound like you are having a lot more problems with the endo than I am with mine.

    Are you a member of the Endometriosis Association? Even if you aren't a member, I bet if you called them someone would be happy to talk to you and give you good advice. They are located in Milwaukee, Wisconsin. The women there all have endo, too, and are so wonderful. Of course they are not doctors, but I bet they would advise you to get a second opinion. I would go to a doctor who specializes in endometriosis. When was your last laparascopy? Do you have any photos or maybe get a copy of the surgical report?

    I feel so bad for you, Tandy. I think, though, that you are smart to question this. I, too, have read a lot like you have and not all women with endo are helped by a hysterectomy. I think some doctors are too knife happy and doing hysterectomies is a great money maker for them. However, if your second opinion also advises a hysterectomy, you may have to consider this.

    Keep us posted. Sending gentle hugs your way ((((hug))))

  7. tandy

    tandy New Member

    to check out~
    I plan on spending alot of time today researching.
    Like I said,..I just wanna feel somewhat confident that this is my answer. I don't wanna jump into something as drastic as this if I'm having alot of doubts~
    My last lap was 2002.
    I had it easy for 2 yrs after,..then symptoms progressively got worse for me.
    When your faced with somthing like this,..its not an easy decision to make~
    Take care
  8. sunflowergirl

    sunflowergirl Well-Known Member

    I had endo from the get go. Bad cramps since I started period at l0 and then IBS diagnosis at l9. When I was 24 had a cyst removed and they confirmed endo. Really bad IBS UNTIL I went on that no sugar, no white anything, etc. etc. I think the sugar was causing fermentation down there which was giving me all that gas. When it got bad I even discovered taking 2 charcoal tablets which are wonderful. Within 30 min. gone!

    I have to also add that since I started taking the magnesium oxide (which I recently found out is more like a laxative) I have no more IBS. That means that I went thru basically almost 50 years of suffering. I still take 500 of the magnesium oxide at night but also take a good magnesium and malic acid for the FM.

    And I forgot to add. Most definitely a colonoscopy because of all that trouble.
    [This Message was Edited on 09/23/2005]
  9. namow

    namow New Member

    I wish I never had the hysterectomy, after the surgery with removal of both ovaries, due to endometriosis (13 years ago) my life has been absoulutely miserable, the fibromyalgia showed up and my hormones have been all over the place ever since. PLEASE PLEASE PLEASE research this asmuch as possible because once you do it is not turning back.
    Wish you the best of luck
  10. tandy

    tandy New Member

    for her reply here~
    I know I'm late at it :) sorry

    I'm STILL researching and postponing the hysterectomy for now. I want a second and maybe 3rd opinion before I agree to this operation!!
    all I've read so far says that a complete hyster. is not the answer for endo. (once in awhile,..yes, or maybe)
    I realize theres no turning back and thats why I really want to know what I'm doing is right. first

    and thanks again

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