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I'm done. I want this bladder OUT!

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  • #16
    (((((((((hugs))))))))))) So sorry about your pain and the miscarriage!!! This is really tragic. I hope you find some relief soon.
    I myself have thought about gettting my bladder removed. I don't think I will -though anytime soon anyway. So many people still have phantom pain where the bladder was.
    Try to take some joy in the small things today and this weekend!!


    • #17
      Just wanted to send you some (((hugs))). I do hope things get better.

      Shopping??? Did someone mention shopping? I'll get my hat... ;-)

      Where I can be found most days.

      Link to the ICN Patient Handbook:

      Link to the IC Diet:

      IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


      • #18
        Dear Robin,

        My heart goes out to you as you struggle through this. I had my first cystectomy in Natick, MA in 2002. I hope some of the other treatments that you haven't yet tried will reduce your pain level to a livable level.

        Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

        "One hour at a time, this was NOT my American Dream but it has to work out somehow."

        I also have some journals of my journeys, past and some present at: and

        Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.


        • #19
          Bladder removal

          As the others have said bladder removal may not end your pain. I don't think it is the answer for you right now.

          I would get on an antidepressent asap and tell your Uro how desperate you are. You need pain meds for times like this. Maybe see a Pain Specialist. Hopefully the Uro can give you pain meds to hold you off until you see a Pain Specialist.

          Good luck



          • #20
            The Patient Handbook lists many treatment options. I think it's important to try all possible treatments before considering bladder removal. You've had remissions in the past and hopefully will soon begin another one.

            Sending warm hugs,
            Stay safe

            Elmiron Eye Disease Information Center -
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            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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            Diet list:

            AUA Guidelines:

            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

            Anyone who says something is foolproof hasn't met a determined fool


            • #21
              Lesa, I read your story. that is amazing. I can't believe all you've been through!!!! I feel like I've been through a lifetime of this and I've only had it for 1 year. I'm so happy for you that you found a solution. That's awful they held you for so long without food or drink. I do have a soft spot for UCLA though - I went there for a short time.
              I hope someday I can be painfree. Do you take any pain meds now?
              I am not ready to get my bladder removed. I'm 26, but I would really like to be rid of it someday. I love hearing how you can eat what you want and have pain free sex!!!!! Wonderful!


              • #22
                September 19, 1984

                I don't have a clue what you felt when you had your miscarriage but I know how I felt.

                Just let me know if you start instillations. That is what I do and for me it works.
                Last edited by Judith56; 06-25-2007, 10:58 AM.
                TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                My Helpful Hints for Home Instillation:

                Institute of Female Pelvic Medicine (J. Dell, My MD)
                Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                I post to encourage and offer total support for rescue instillations.
                Find me on facebook: L. Clark Thomas


                • #23
                  Sorry I missed this post earlier. It's kwazy here in my office and I started summer school to take a class in advanced web site management.

                  Mom... I really do hope you are feeling better but, even more so, I hope you understand that there are many options worth trying before bladder removal. Yes, yes, we've all been there. I remember asking my doc to remove my bladder about a year after my IC started. Thank god he said no because I really did get better.

                  The instillations can have fabulous results... as Kadi shared above. Please please talk with your doc about these.

                  Also... if you'd like to brainstorm by phone... I'd be happy to talk with you personally! You can call me at the ICN office at: (707)538-9442.

                  Do you know where is your pain coming from??? Bladder, muscle or both???

                  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.


                  • #24
                    Thanks so much for taking time to respond to my note. I'm doing a bit better emotionally but still having a rough time with the IC. Everything I've tried (atarax, elavil, paxil) causes retention which freaks out my pelvic muscles and makes things worse. Unfortunately, I can't take elmiron because it causes severe back pain in my kidney area. Wierd, I know!

                    I can't take the antidepressants because they too cause retention. That, in and of itself, is making this worse.

                    Anyway, I've got an appointment with my gyno this afternoon to check on VV and yeast issues (I would give anything to have him say, oh yea, you have yeast and that's what's been flaring you for months!) and another appointment with my uro next week to talk about other options. I'm thinking that intillations will be my next step and both Kadi and Sarojini have been kind enough to send me their recipies so that I can take them to the uro.

                    So...I'm moving forward one step at a time. Geez, this is rough. My remission had been pretty blissful and it's really hard to feel like I'm back at the beginning of all of this again.


                    • #25
                      My heart goes out to you! I have felt those feelings before! They stink Stink StinK! But as Judith stated getting your bladder out may not be the answer. I didn't seriously consider bladder removal until I had no options left and was completely bedridden for several months, mine was succesful and I feel blessed. But please please look into your other options. also I would definalty follow up on your depression you are doing the right thing by talking to your doc about it. feel free to PM me if you need to talk!
                      Blessings & Hugs,