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    jimmydickens
    ICN Member

  • jimmydickens
    replied
    Originally posted by WetOnePDX View Post
    Hi I am a middle aged guy, had ic diagnosed a while back, hydro biopsies the works. I took all the meds, and did bladder instillations and eventually got into a long remission.

    Now I am back with syptoms for the past 7 months, and it seems I've been in a really bad flare for the past 5 weeks.

    I started elevil again last night and got some sleep, that was great. The last three days though I have had a new symptom that is very distrubing.

    I can go 2 hours or longer without peeing (just live with the pain) but all my pain spots will be worse, but in the last two days after peeing my bladder hurts worse than ever, and this spreads to everywhere down there.

    Also, when I am in bed, if I stay on my back, the pain in my bladder slowly gets better, if on either side, it intensifies.

    Any other guys with this? What do you do about it?

    Any one else with the bladder that hurts worse after peeing?

    I do not have an infection.

    Very frustrated with long flare, and the effect this is having on my life and everything.

    thanks!
    How long did you go before the IC problems returned?
    I can't go longer than one hour before I 'must' pee or I think something will explode! I have long painful stabs before and after. That bladder / penis pain is level 8 but if I slip about the IC diet I'll jump to 10 in a second!
    I just started smoking K2 (synthetic marijuana) because it is legal where I live. After I had the correct amount down, it helped a great deal....
    I didn't get any relief of bladder pain using ELMIRON until 17 or 18 months. Now I'm going to use a 'TENS' unit (just ordered one from Amazon.com) and I'll post the results.
    jimmydickens
    ICN Member
    Last edited by jimmydickens; 02-28-2011, 05:49 AM.

    Leave a comment:

  • suzannes
    ICN Member

  • suzannes
    replied
    My bladder does hurt when empty, it goes away after 5-10 minutes.

    Suzanne

    Leave a comment:

  • Linda May
    ICN Member

  • Linda May
    replied
    Maybe you need to start a series of instils again if they helped the first time they should help again.

    Leave a comment:

  • bob04951
    ICN Member

  • bob04951
    replied
    Ah, those darn flares. Watch the diet for sure. My hub is also mid-age (55) and suffers from those, but he gets bad when he feels good. They can go on for weeks and months, the diet is sooooo essential. Behave yourself for a few weeks and really stick to it.

    As far as relief, lots of water and bladder friendly tea and beverages, flush, flush that bladder (no cranberry!). Bob also has trouble sleeping for more than an hour or two, the longer he sleeps, the worse the pain is when he wakes. You are not alone there. The sleep deprivation can really get to you and you will do anything to just have a few hours, and then BAM. You will find the right thing. Right now Bob is in a flare, he was bad when I let him out of his cage LOL and will suffer for days. Best not to have "bad" stuff in the house so you are not tempted.

    Hydroxyzine at bedtime helps Bob get at least 2 hours sleep when it kicks, and see other guys here whom it has helped. Much better than the 30 minutes he was getting. Might want to look in to it, talk with your doc for sure. Always make sure there are no interactions with your other meds.

    Sorry you are going through this as well, but glad you found the ICN. A lot of helpful info here, on the whole site and not just the support forum. Read up, go to your docs with info, we actually printed some stuff out when first diagnosed and our NP was intrigued, he never had a male IC patient. He did his own research and is now our best buddy. Doc "shopping" is unfortunately a part of this, but a necessary, you want to have a doc or NP who gets this.

    Stick with the diet guy, it is not so bad. Imagine having a low salt, low carb, low fat on top of it. That is Bob, but he deals with it fine. Hang in there, you will feel better. The flares do usually subsiide for most. Jill, wife of Bob

    Leave a comment:

  • ICNDonna
    ICN Staff

  • ICNDonna
    replied
    Are you following an IC diet? That can be a huge help. I hope you begin feeling better very soon.

    Donna

    Leave a comment:

  • WetOnePDX
    ICN Member

  • WetOnePDX
    started a topic Any one else?

    Any one else?

    Hi I am a middle aged guy, had ic diagnosed a while back, hydro biopsies the works. I took all the meds, and did bladder instillations and eventually got into a long remission.

    Now I am back with syptoms for the past 7 months, and it seems I've been in a really bad flare for the past 5 weeks.

    I started elevil again last night and got some sleep, that was great. The last three days though I have had a new symptom that is very distrubing.

    I can go 2 hours or longer without peeing (just live with the pain) but all my pain spots will be worse, but in the last two days after peeing my bladder hurts worse than ever, and this spreads to everywhere down there.

    Also, when I am in bed, if I stay on my back, the pain in my bladder slowly gets better, if on either side, it intensifies.

    Any other guys with this? What do you do about it?

    Any one else with the bladder that hurts worse after peeing?

    I do not have an infection.

    Very frustrated with long flare, and the effect this is having on my life and everything.

    thanks!
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