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I got a removal and Indiana pouch but two months later the frequency is back

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  • I got a removal and Indiana pouch but two months later the frequency is back

    I’m so stressed, all my IC symptoms were completely gone for two wonderful months after the surgery and suddenly, when I arrived back home in Seattle, they returned but only in my urethra. Burning and feelings of needing to pee for hours even though I don’t have a bladder. It’s so hard to sleep. My surgeon was dr evans in North Carolina though I live in Seattle. Does anyone know anything about this or have a similar experience? Please only post if you have something helpful or informative I’m not ready to answer questions about my life and surgery yet/right now. I will later when things are less out of hand. I’m 26 and healthy besides the bladder removal.

  • #2
    I still have my bladder, but have read posts by others who have had this surgery. I remember one who posted that when she had the feeling she needed to go she sat on the toilet and it seemed to help. I hope you will have responses from those with experience. I have also read that it can take a long time to heal and your body hasn't adjusted to the change. If you look at other posts in the Bladder Removal forum you'll find posts from folks who have gone through this.

    Sending warm well wishes,
    Stay safe

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    • #3
      Hi Stamen, Im 6 years out and I still have phantom pain. The worst part is that physicians dont want to believe me. Ive even been to pain clinics who wont perscribe what is needed to help me. Bladder removal is a not a cure otherwise everyone would have one. Believe me, I understand. With me, the pain is worse with bowel movements before and after. Im still trying to get help after all these years