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  • Carolanne

    Ih this is my first time on the forum, I've had Interstitial cystitis for 7yrs, the first being a year going to the doctor being told I had a UTI and put on antibiotics, The I saw a new doctor who diagnosed IC, Then referred to Urology, I've had every treatment,, bladder stretch twice, botox twice, weekly catheter treatments, nothing has been successful, going to the loo on a bad day every 10 15 minutes all night, so the next step is to have my bladder removed, which sound horrific being told by the consultant what can go wrong. Anyone out there who's had it done and can give some advice I'd be greatly appreciated best wishes Carol

  • #2
    Carolanne, I hope you found our discussion on bladder removal .. there's a large discussion board dedicated to this topic. Just scroll down the page. Also, I would encourage you to watch our new video on the 2022 Treatment Guidelines. It's all about sub typing now! Focusing on trying to figure out the underlying cause vs. effect... whether it be hunner's lesions, bladder wall driven (estrogen atrophy, GSM, chemo cystitis), pelvic floor driven, pudendal neuralgia, and central sensitization! Once you understand the underlying problem, then the best and most effect treatments can be tried!

    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality.

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.