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Did that doctor really just say that!?

I have a disease called I.C. Or some know it as painful bladder syndrome. They don't know what causes it or how to stop it. The doctors in my small town don't know much about it all. I have a team of urologist in Nashville, Tn. And none of them agree on the cause. I did learn from Mayo Clinic that it is actually a chronic pain disease and the bladder is just where it starts destroying the lining and causing scar tissue. As it progresses they said it will "copy" several chronic pain disorders i.e: i.b.s, fibromilagia, lupus (which it is a former of auto immune disease) etc. The only treatment is done by cath inserted and medicine put directly into bladder...so I was at my primary getting labs done for pain pump trial and I was just having a bad day. I go from anger to sad..I just can't wrap my mind around the fact they can't just cure this and I was venting this to my p.c. and she said,"you don't have to get the pump. Pain won't kill you." Seriously?! It's hard enough dealing with my whole life being taken away and having seizures from lack of sleep and the guilt that I can't be the mother,wife and b.f. that I use to be but having your doctor tell u "we can tamper you off all that medicine they (Vanderbilt and pain management ) have you on and you won't be so tired and can be a better mom to your kids again." I left in tears. There is not judgement ppl can have towards me that I haven't already mentally beaten myself up about...I wish I could never go to a doctor again and get my freedom back. I am dealing withat enough and now I feel like I have burdened my doctor. How messed up is that?
Shereece
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Comments

  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 324
    There is a Buddhist saying, "Pain is inevitable. Suffering is optional." I had been told that throughout much of my life until a doc told me, "Well why did they allow you to suffer so much?" So now I have a team helping me do away with suffering and I get a lot of strength for that right here on these forums.

    Horrible of me to think but let's see how much your former doctor can withstand in pain before she screams "enough"! Pain will cause a person to lose their will to live! I am also blown away by the fact that I keep hearing "there is no cure....' "We have treatments that may help..." BS! (And getting angry helps!) Make sure your doctors know that you are willing to treat this pain aggressively and you want them to join in the fight or step away.

    We're here to help! You won't have to feel alone again!
    Sheila

    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • My doctor that is putting the pump in called so see if I was having headaches from the trial. I told him what my primary said and he simply said,"time to look for a new primary." I battled not going on pain management for years and I have been wondering how much of it is "us" and how much of it is us afraid how the world will see us. We all know there is a huge stigma that comes with pain. thank you all for your support.
    Shereece
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