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Interstitial Cystitis recoverers

Discussion in 'General Discussion Subforum' started by twocups88, Sep 9, 2022.

  1. twocups88

    twocups88 Well known member

    Did any of your pain get worse when your bladder filled and then felt better when relieved? I have been struggling with IC for 11 years and over the past year developed IBS. My IBS hasn’t gone away since my IC is back but it definitely doesn’t bother me as much. Now I’m in the worst of Ic flares. It hurts so bad when my bladder fills. I urinate 6 times at night. And I can’t sleep. I actually miss the IBS. At least I could sleep. Sorry if I come here seeking reassurance. I just don’t know what to do.
     
  2. Booble

    Booble Well known member

    Is it only at night or during the daytime too?
     
  3. twocups88

    twocups88 Well known member

    Did any of your pain get worse when your bladder filled and then felt better when relieved? I have been struggling with IC for 11 years and over the past year developed IBS. My IBS hasn’t gone away since my IC is back but it definitely doesn’t bother me as much. Now I’m in the worst of Ic flares. It hurts so bad when my bladder fills. I urinate 6 times at night. And I can’t sleep. I actually miss the IBS. At least I could sleep. Sorry if I come here seeking reassurance. I just don’t know what to do.
     
  4. twocups88

    twocups88 Well known member


    Day and night time. The nighttime has been bothering me because I can’t sleep well. Maybe getting three hours a night. Before the flares I slept like a baby.
     
  5. Booble

    Booble Well known member

    I don't know....I think I'd do a quick urine test with a doc to rule out any bacterial infection. It would serve two purposes -- if you do have an infection you will be able to get rid of it quickly and easily with some antibiotics. And if you don't have an infection it will ease your mind which will make it easier not to worry about it.
     
  6. twocups88

    twocups88 Well known member

    Thank you. I tested it for infection. It’s negative. It hurts so bad. They looked at my bladder ten years ago and said it had some small pecs of blood like irritation and they don’t know why. Now they are saying those are normal
    On the bladder. I don’t know. I will be ok if I could just sleep. Lack of sleep makes everything worse.
     
  7. Booble

    Booble Well known member

    Glad you've ruled out anything bad. I think that actually is normal.
    Night time is a great time to do some journaling/writing. When your brain is nice and tired the good stuff comes out. Maybe worth a try?
     
  8. twocups88

    twocups88 Well known member

     
    Booble likes this.
  9. Booble

    Booble Well known member

    Yep, been there. The hyper focusing, the endless fear.
    The good news amidst everything -- things cycle around. It doesn't feel like it right now but this too shall pass.
    Take care...
     
  10. twocups88

    twocups88 Well known member

    thank you. I think it will pass but then it will go to something else like IBS or another thing. I’m tired. I just want to enjoy life. I love life but my mind doesn’t let me enjoy it.
     
  11. Booble

    Booble Well known member

    I think your body is trying to tell you something, TwoCups.
    You've got some work to do! Time to pull out the Sarno?
     
  12. twocups88

    twocups88 Well known member

    I think you’re right. I have a lot of trauma.
     
  13. Booble

    Booble Well known member

    Step right up. You have the power to make it all melt away.......
     
  14. twocups88

    twocups88 Well known member

    Thank you but I don’t believe anything good will ever happen to me in regards to anxiety and pain. Been to 15 different therapists and 15 different drs and I’m worse than ever.
     
  15. miffybunny

    miffybunny Beloved Grand Eagle

    Yes I had "IC" many years ago and that is what I experienced as well. The key is to lose the fear and believe your bladder is totally fine. The nature of the urgency and spasms is so hellish and relentless and "attentional" that it generates a great deal of fear imo. It's also incredibly hard to shift focus. In some ways it's similar to tinnitus I would imagine...there's just something particularly maddening about it. Your job is to stay as calm as possible and not worry. Do you take anything to help with sleep? It could be beneficial to get you over this hump.
     
  16. Booble

    Booble Well known member


    That's because it's one of those, "If it's to be, it's up to me" kinds of things.

    Anxiety might be lifelong but there are tons of us who have managed to set it on the backburner for years at a stretch. Yes, it rears it's ugly head from time to time but we learn tips and tricks that work for us to live a relatively normal and a happy life. You can too.
     

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