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My 1st visit to see uro doc and I'm pain free!

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  • rpinion1
    replied
    what is it?

    i have had burning since i was a todler im 17 now and have found that sex can make it worse, it was never bothersome till i was about 12 or 13 and then it started to become crippling i do have pressure and unable to hold it fro a long time especially if im sitting down but the burning is what gets me its teh worst part im afraid to pee because i think it will burn and it always does, ive been from dlc to doc ive seen urologists, nephrologists even gynos and everyone just shrugs thier sholders and sends me home with vicodine and pyridium, my pediatritian even suggested to my mothe that im faking it because they can never find an infection, i keep telling them its not an infection and my mother too but now ive had to drop out of school because of pain pyridium is slowly losing effect on me and everyday becomes harder, iv been to the hospital for caths and dehydration because im afraid to drink anything but sprite cuz i kno il have to pee if i drink, sprite seems to help, i cant live my life like this anylonger what should i do what could this be

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  • bob04951
    replied
    Don't go hurting yourself girl! Anyone who lives with pain will tell you there are good days and bad, and docs understand (hopefully). And look up bladder cancer, my dad had it, it was not painful for him anyway. A lot of things can affect your pain levels, from a diet boo-boo, the weather (low pressure systems), stressing, too strenuous physical movements, and on and on. The pain can come and go, we only hope day to day that it goes. You are not nuts and it sounds as though your doc is on top of things, so he knows that too. Good luck and hope your pain free days continue for a long, long time, that is the goal after all! Jill, wife of Bob

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  • bubbe1
    replied
    first visit to uro and no pain

    Originally posted by 425runner View Post
    Well, I was officialy dg. with interstitial cystitis based on my symptoms and ruling out other conditions, I've had all kinds of tests done before - all negative. The doc is worried about the blood in my urine, suggesting that it might be bladder cancer. I sure hope not...but it would explain why I've been so unexplainably tired for the last few months. Anyway, he put me on Elmiron and suggested Bladder-Q as an alternative. I already take Cystoprotek and it seems to help a lot!

    He also said to call the office next time I get a flare and they'll do a rescue instillation. What do they instill? Lidocaine?? Also, he scheduled me for an in-office cystoscopy next month. That plus following the IC diet which I already do.

    Weird how things can happen to the human body. I was always healthy, energetic, and cheerfull up until last October. Ever since then it's been a downward spiral. But we're taking care of it now, so that's good.
    Hi,
    I'm glad that the doctor took you seriously and you will be working on treatments.
    I know what you mean about feeling fine and all of a sudden not feeling fine, but it does get better.
    You sound like you have a good attitude which can make a huge difference, I think.
    Keep us up to date, and good luck!
    Laurie

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  • cmclien
    replied
    Originally posted by 425runner View Post
    Well, I was officialy dg. with interstitial cystitis based on my symptoms and ruling out other conditions, I've had all kinds of tests done before - all negative. The doc is worried about the blood in my urine, suggesting that it might be bladder cancer. I sure hope not...but it would explain why I've been so unexplainably tired for the last few months. Anyway, he put me on Elmiron and suggested Bladder-Q as an alternative. I already take Cystoprotek and it seems to help a lot!

    He also said to call the office next time I get a flare and they'll do a rescue instillation. What do they instill? Lidocaine?? Also, he scheduled me for an in-office cystoscopy next month.
    Lots of people with IC have blood in their urine, I'm surprised he didn't mention that. Most likely because of the inflammation and possibly pinpoint bleeding in the bladder lining. Try and not worry too much about bladder cancer, from my understanding it is rare but they like to rule it out.

    The cystoscopy will rule out the cancer. I had one done in office about 6 weeks ago myself. Luckily it wasn't a big deal. My doctor put a catheter in, put sterile saline into the bladder, looked on screen with a camera and I could see it on a tv screen etc. Emptied it out to look for blood. Filled me back up and had me pee it out. Mine didn't hurt at all, the worst part for me is always the discomfort of simply being cathed. Some doctors will numb the urethra.

    Rescue instillations -I haven't had one done yet but there are a variety of things they use. Usually something that contains an anesthetic, sometimes a steroid, sometimes something like elmiron or heparin that re-coat the gag layer. There are others people here who know lots more then me about it!

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  • 425runner
    replied
    Well, I was officialy dg. with interstitial cystitis based on my symptoms and ruling out other conditions, I've had all kinds of tests done before - all negative. The doc is worried about the blood in my urine, suggesting that it might be bladder cancer. I sure hope not...but it would explain why I've been so unexplainably tired for the last few months. Anyway, he put me on Elmiron and suggested Bladder-Q as an alternative. I already take Cystoprotek and it seems to help a lot!

    He also said to call the office next time I get a flare and they'll do a rescue instillation. What do they instill? Lidocaine?? Also, he scheduled me for an in-office cystoscopy next month. That plus following the IC diet which I already do.

    Weird how things can happen to the human body. I was always healthy, energetic, and cheerfull up until last October. Ever since then it's been a downward spiral. But we're taking care of it now, so that's good.

    Leave a comment:


  • cmclien
    replied
    Thats pretty funny but I wouldn't tempt fate! Clearly diet effects you and you might be able to totally manage where you are at by being "good" and following it most of the time. I'm happy for you that things are better.
    You could just be in the beginning phases of the condition where Dr. Parsons says you could have a bout or two a year and then be perfectly fine the rest of the time. If thats the case, I hope you stay that way.

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  • ICNDonna
    replied
    Laurie is right. Please don't do anything that will cause you pain. IC symptoms can vary so much that your doctor will understand.


    Donna

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  • bubbe1
    replied
    first visit and no pain

    Originally posted by 425runner View Post
    I feel like a fake. Last week I was in so much pain I could hardly function, took Vicodin etc. but after eliminating all the offensive foods/drinks and taking Cystoprotek I feel fine, except for minor burning.

    I almost feel like I should drink some diet Coke or take some ascorbic acid (vit.C) to be in pain again so he would believe me today.

    It never fails! It's like taking your car to the mechanic because it's making the most horrendous noise, and when you get it there, nothing!

    I'm so glad you found ways to make your bladder feel better. Now, don't do anything to make it mad again. Just tell the doctor what happened and let him take it from there.

    Good luck. Let us know what happens.
    Laurie

    Leave a comment:


  • 425runner
    started a topic My 1st visit to see uro doc and I'm pain free!

    My 1st visit to see uro doc and I'm pain free!

    I feel like a fake. Last week I was in so much pain I could hardly function, took Vicodin etc. but after eliminating all the offensive foods/drinks and taking Cystoprotek I feel fine, except for minor burning.

    I almost feel like I should drink some diet Coke or take some ascorbic acid (vit.C) to be in pain again so he would believe me today.
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