Is Ellen Comstock around??

Discussion in 'Fibromyalgia Main Forum' started by tandy, Sep 28, 2005.

  1. tandy

    tandy New Member

    Hi Ellen~
    Me tandy~
    I really need to ask you a few questions.

    Let me try this for your attention first.
    Then if you respond,...I'll ask away~

    It has to do with my upcoming Hysterectomy for Endometriosis.

    Hope you see this :)
  2. ksp56

    ksp56 Member

    Yes she is around. I read several posts from her, last night.

    I think she works, so it may be later when she finds this. If I am on, I'll bump for you. She is good at answering!

  3. tandy

    tandy New Member

    Thank you KIM!!!

    yes,..please do keep bumped.
    This is important~

    :) Hugs
  4. tandy

    tandy New Member

    again and again~
  5. EllenComstock

    EllenComstock New Member

    Just saw your message. Anything I can do to help with your decision-just ask away.

  6. EllenComstock

    EllenComstock New Member

  7. tandy

    tandy New Member

    Here goes~
    theres so much on my mind that I hope to get across even a slight understanding.
    Yes,... I'm sceduled for a complete hysterectomy on the 20th of Oct. My doc. feels that this is the answer.
    Although I made it clear that I really did'nt want one for fear that it would'nt take away all my endo pain. (or that it would reaccur) He did'nt seem to think I'd have a problem.(don't they all??) sorry to sound like a pessimist.
    So anyways~ I basically took the darn OR date and told my gyno that I'm gonna research the whole thing for pros and cons. If I decide I do not want the hyster. ,...He will agree to another clean out Laproscope. But he did'nt think that getting a 'clean out surgery' every 3 yrs was the right thing to keep doing~ (why?? I don't know). maybe because more and more adhesions could grow??
    although the last surgery I had 3 yrs ago, I was'nt that bad as far as amounts of endo found. maybe it was more the location that causes me most pain??
    (again,..I don't know)
    So,...the last 3-4 nights for hrs at a time,... I've been searching hysterectomys and from what I'v etaken in so far,.. I'm so scared that this is'nt gonna work for me!!
    Not only that,..I think its gonna cause MORE troeuble possibly with a whole host of other issues.(hormonal)which then causes adrenal problems and a cascade of problems~
    (not always,..but theres a good darn chance!!)
    so,..I'm just wondering why you never agreed to a hysterectomy yourself?? are you as frightened of the outcome as me??
    (I hope to not sound like a a huge whining baby!!)
    Cause if I had more of a chance that this surgery would help me,..I'd do it tomorrow!! I'm scared yes,..but not chicken when I know the outcome is worth it.
    I just feel so hesitant about taking all my female parts out,..for something NOT life threatening,..and NOT guarenteed to end my endo pain!!!
    Can I get your take on my situation??
    I'm just curious cause you know what I'm dealing with, with the Fibro and IBS,poss. IC and Endo.
    What a wreck I am.!
    Thanks for reading and helping~
    I'm 42 BTW and was hoping that eventually menopause would lessen my symptoms of endo.
    (doc. says it may possibly help but I've got a looooonnng wait till menopause!!) what a jack as*!
    I know some woman who started that around my age now,..or 45 yrs old.

    Blabbin again.
  8. tandy

    tandy New Member

    back up top for Ellen~
  9. tandy

    tandy New Member

    from page 3 back to 1
  10. EllenComstock

    EllenComstock New Member

    I just got in this morning and saw your message. You sound just like me a year ago when the doctor I had my latest laparascopy with was pushing for a hysterectomy. If you haven't got a second opinion, I would definitely get one.

    I know exactly how you feel. All I could do was picture myself after the surgery still having problems and feeling so upset having everything removed and no improvement! A hysterectomy is such an unnatural thing to have done to your body and of course it throws you into instant menopause. I am fortunate in that the specialist I saw at the Cleveland Clinic said my endo wasn't as bad and I didn't need a hysterectomy. I read an article once that something like half of the hysterectomies in this country are being done when they are not necessary! It also said to beware of any doctor who pushes a hysterectomy before trying less invasive treatments. And if you have endo other places other than female organs, a hysterectomy won't remove them.

    It sounds that your endo is worse than mine. I am at a stage 1 and I am guessing that you must be at a higher stage than that. Of course we both know it really depends on where the endo is as to how much pain it causes. It isn't so much how many growths you have. Where exactly is your endo? I know that the colon, cul-de-sac and bladder are bad places to have it. The tissues are more delicate and the chances of damaging the organ are higher. However, the specialist I saw at the Cleveland Clinic said that laparascopy procedures are improving and some areas that were difficult to remove endo from before are more possible now. One of the dangers of having many surgeries is a greater risk of adhesions. That's why it is so important to go to someone who is an expert in doing laparascopic surgery. This will definitely lessen the chances of adhesions. Do you live anywhere near the Cleveland Clinic or maybe call them and ask about any specialists in your area? I really wish you could go to Cleveland. I saw Dr. Falcone there and he was really wonderful. He spent so much time with me and was very compassionate. Please get a second opinion to ease your mind!

    Since you are so upset about having this surgery now, I don't really think you should do it. I think if you were really ready to have one, you would be more at peace with your decision. And we both know you are not. Why not for now have another laparascopy? Does your doctor take pictures of the surgery for you to keep? You could take them to another specialist like I did to get his/her opinion.

    I think you said before that the Lupron shots didn't help you? The specialist I went to said he could put me back on them if my periods got to be more of a problem again, but so far they haven't been too bad.

    I think it's good that your doctor is willing to do another laparascopy if you decide at the last minute you just can't go through with the other surgery. Of course this has to be your decision, but why not hold off for now? You can always schedule it for later if you get a second opinion that says you should have it.

    I hope this has helped you some. Keep me posted.

    Ellen ((((((hugs)))))))

  11. EllenComstock

    EllenComstock New Member

    When did your mother go through menopause? I don't know how true this is, but I've heard that whatever age your mother went through menopause, will be around the time you will go through it. I am a little older than you-46. My mother was in her early 50's when she went through the change.

  12. EllenComstock

    EllenComstock New Member

  13. tandy

    tandy New Member

    and giving me your thoughts Ellen~

    Lets see if I can recall all I need to answer. LOL,..yea,..big joke!
    My Mom had a hysterectomy at 40 yrs. and get this,..She does'nt even remember why?? !! lol How could you NOT remember why!!? thats just beyond me.
    (she's 70 now)
    As for stage of my Endo. This was never really discussed. However I know I have it in crucial or delicate areas such as culdesac,colon and surrounding my ureter on one side. My guess is maybe stage 3??
    I asked one time and my doc. did'nt BELIEVE in staging illnesses that were'nt terminal. (thats what he said) jerk!
    My gutt instincts agree with you and think I should just go for the Laproscopy for now. I just don't know what follow up BC to use cause I've been on Depo for over 6 yrs straight and I feel I need a rest from that stuff too. I was thinking of doing the Lap. and then learning to use natural progesterone cream to treat or calm down any remaining Endo left behind.
    A dr. Lee uses this approach and his site online has me very curious if this could help me.

    Its hard to tell family members who don't understand it all cause they all say "Oh,..I'd have the hysterectomy",...
    "Just think, more periods!"

    Its not that easy and its not a cure for endo. I don't care what doctors say,...I've read enough to know better.
    especially when you have it in spots that I have it in.

    I think American Drs. do far too many needless hysterectomys too!!

    I did do 6 months of Lupron after a surgery for this crap back in 98. It helped me while I was on it.
    I had minimal pain. but I figured some of the relief was being that I had just had a surgery to clean out endo too.
    I did'nt have bad side effects which I was warned about with lupron.
    I have 4 books signed out from the library on Endo,.and Hysterectomys. I'm crawling into bed again tonight and reading away!!
    But, far I'm really thinking of just trying the Lap. one more time.?? some may think its the easy way out~ I like to think I'm being cautious and just wanna be sure before I do something I'll regret.

    I'll surely keep you updated when I make a final decision. which will be within a week.
    I hope!
    Thanks so much for being here and sharing your ideas/thoughts~ You've helped me out alot~
  14. tandy

    tandy New Member

    I'm so glad you wrote~ :)

    Whats the name of the low dose pill you take?
    cause I will surely keep that in mind.

    I have no problem getting a laproscope done,then follow up with whatever.
    I just don't think hysterectomy is right for my case. Hopefully when I go thru menopause naturally then my endo will die down on its own.(at least some??)
    thats my hope anyway.
    Thanks again :)
  15. tandy

    tandy New Member

    Rainfyer~?? Do you take the nordette (hope thats right??) everyday?? with no blank pills.
    a low dose every single day so you never get any break thru bleeding?

    Last question,for now!!lol

  16. tandy

    tandy New Member

    would'nt that be the icing on the cake!??

    (just maybe it'll work for me too)

    I'm gonna ask about that at my pre-op next week.

    (fingers crossed :)
  17. EllenComstock

    EllenComstock New Member

    I'm not here on the weekends so just reading messages this morning. I'm glad the other lady responded with another option for you. The endo specialist I saw at the Cleveland Clinic said I could go on the Lupron shots indefinitely if I have more problems with the endo again. I never had any bad side effects from the shots and it was great to not have any periods for awhile.

    It sounds like you are coming to a decision at least for now. I always urge people to get a second opinion and to read. When you are an informed patient, you can make an informed decision. As we both know, endo is such a frustrating disease-no easy answers.

    Wouldn't it be great to be able to just crawl out of our bodies and get new healthy ones? (I would be sure to get one in a smaller size, too!) Keep me posted.