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  • Questions about bladder removal

    Hello,

    I'm 13 years in with Refractory IC and currently going on disability for the 2nd time with it. I've always had 24/7 pain and frequency. This past year, it's worse than ever and I'm bed-ridden more often than I want to admit from the pain.

    My doctors and several specialists say bladder removal is NOT an option if pain is a main symptom. They said the reason is because the bladder has nerve "memory". So, the nerves grow back with the pain memory thus not resolving...the PAIN. They said, this is a proven fact, not a theory, and for this reason insurance will not typically cover bladder removal where pain is a primary symptom.

    My questions are these: My bladder capacity has so far remained normal. My problems are 24/7 PAIN, spasms, frequency, and this past year alot of vaginal/urethra and bladder spasms. Did any of you who had your bladders removed have pain as a primary symptom? Did you also have urethra and/or vaginal pain/spasms and if so, did the bladder removal clear that up for you?

    Also, was pain one of your main symptoms? Why are my doctors stating it's a "no" for bladder removal if pain is a main problem, yet I've seen where other IC'ers have had relief from pain with bladder removal?

    I'm just at my witt's end with all of this. I've seen the top specialists on IC in my area and they cannot do anything more for me except pain management, and I guess I'll be bed-ridden 75% of the time.

    I never thought I would explore bladder removal, but something has to give. This is just no way to live. If my insurance approved it, I think at this point I would go for the surgery.

    Did you who have had bladder removals have doctors tell you this same thing?? How did you go about getting it approved?
    Last edited by jeanniebug; 11-13-2016, 06:12 PM.
    Jeannie
    "She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown

    IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies

    Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed

    Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.

    Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
    As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.

    Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!

  • #2
    Re: Questions about bladder removal

    Originally posted by jeanniebug View Post
    Hello,

    I'm 13 years in with Refractory IC and currently going on disability for the 2nd time with it. I've always had 24/7 pain and frequency. This past year, it's worse than ever and I'm bed-ridden more often than I want to admit from the pain.

    My doctors and several specialists say bladder removal is NOT an option if pain is a main symptom. They said the reason is because the bladder has nerve "memory". So, the nerves grow back with the pain memory thus not resolving...the PAIN. They said, this is a proven fact, not a theory, and for this reason insurance will not typically cover bladder removal where pain is a primary symptom.

    My questions are these: My bladder capacity has so far remained normal. My problems are 24/7 PAIN, spasms, frequency, and this past year alot of vaginal/urethra and bladder spasms. Did any of you who had your bladders removed have pain as a primary symptom? Did you also have urethra and/or vaginal pain/spasms and if so, did the bladder removal clear that up for you?

    Also, was pain one of your main symptoms? Why are my doctors stating it's a "no" for bladder removal if pain is a main problem, yet I've seen where other IC'ers have had relief from pain with bladder removal?

    I'm just at my witt's end with all of this. I've seen the top specialists on IC in my area and they cannot do anything more for me except pain management, and I guess I'll be bed-ridden 75% of the time.

    I never thought I would explore bladder removal, but something has to give. This is just no way to live. If my insurance approved it, I think at this point I would go for the surgery.

    Did you who have had bladder removals have doctors tell you this same thing?? How did you go about getting it approved?

    If I were you I would continue to search for a surgeon. That's what I will do if my trials fail, I will NEVER accept this bad a quality of life and you shouldn't either. Even traveling to top IC surgeons I would do. This is an inhumane way to leave someone and I'm sick of IC doctors allowing their patients to suffer until they harm themselves! Keep searching, I understand how you feel I really really do. Sending you a big hug!!
    Health Issues
    IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
    Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
    Symptoms:
    I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

    Failed
    Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

    WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
    Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

    Comment


    • #3
      Re: Questions about bladder removal

      Thank you MissM! I feel the same way. My Uro/Gyn did call me tonight and he's doing a CT scan of bladder w/contrast to rule out any new findings...some meds too...then I see him again on Dec. 6th.

      He's a wonderful specialist. I've seen some of the top in the country. Every single one of them say, they will not remove IC bladders where pain is so prominent. I hear what they are saying in that it does not solve the pain in alot of cases...and it's a very serious surgery. It WOULD certainly suck to go through bladder removal only to have the pain come back, and possibly worse. I have seen that happen to a few IC'ers, on these boards and in the real world. It's just for me, if it's the last resort and I'm already this bad off, there doesn't seem like there is much to lose by trying. It's so complicated.

      But I hear you. Nobody should have to exist like this it's ridiculous. I told him, even the strongest pain meds barely touch this pain. And, I told him I would know...because I had an abdominal hysterectomy 9 years ago. I told him...that was a CAKEWALK compared to my IC pain.
      Jeannie
      "She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown

      IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies

      Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed

      Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.

      Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
      As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.

      Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!

      Comment


      • #4
        Re: Questions about bladder removal

        Have you looked at the AUA Guidelines (link in my signature) to see if there are any more options for you? I'm so hoping you will see something there that you haven't tried.


        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        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.

        Patient Help: http://www.ic-network.com/patientlinks.html

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        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.
        [3MG]

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

        Comment


        • #5
          Re: Questions about bladder removal

          Hi Donna!

          I just checked all the treatments again from your signature link.

          The only ones I haven't tried are Botox, Interstim, and Cyclosporine.

          Botox is because I'm not willing to take the risk of having to self-catheter at home for several days weeks or months, which can be a side effect. We have reasons for that mostly because I tend to get back-to-back UTI's with catheters. And, I have horrible urethra, vaginal and bladder spasms as it is. Catheters aggravate the spasms for me very badly.

          The Interstim...we decided not to risk because I already have a portable TENS unit I wear externally which minimizes risks of a surgical implant. And lastly, I can't take Cyclosporine because I am auto-immune and am already on a long-term immunosuppressant, Prednisone. I had read about Cyclosporine a few months ago and was ready to give it a whirl, but my Dr's said no, due to my autoimmune issues.

          It sure is a challenge right now. I know the clear CT scan will help put my mind at ease that nothing new has developed. Once those results are in, it's back to the drawing board.

          Thank you for the suggestion!
          Jeannie
          "She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown

          IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies

          Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed

          Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.

          Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
          As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.

          Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!

          Comment


          • #6
            Re: Questions about bladder removal

            So sorry you are stuck between a rock and hard place. Hopefully in the near future things will change for you. My bladder was removed because it had no capacity and had bands of fiber growing in it along with other issues. I put off having the surgery for as long as I could.

            Comment


            • #7
              Re: Questions about bladder removal

              Jeannie, have you thought about seeing Dr. Robert Evans? He is a surgeon and I've talked to many of his patients and they say he will take you seriously, no matter what stage you are in. He's on my list in case Stanford guy doesn't work out. And I'm in CA, my friend who's also in CA sends her daughter to him, says he's amazing. Just thought I'd mention it
              Health Issues
              IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
              Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
              Symptoms:
              I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

              Failed
              Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

              WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
              Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

              Comment


              • #8
                Re: Questions about bladder removal

                Hi,

                Where is Dr Evans located? I just sold my home due to IC/Disability and am moving to Asheville, NC to live with my mom the last week of Dec.

                I'll still see my specialists in TN quarterly at first, for insurance & disability reasons. I'll eventually transition to new doctors hopefully in or around Asheville.

                I'm so sad to have to leave my career, life and friends of 30 years here in TN due to all this. It still seems unreal that it's come to this.

                But, I'm trying to stay brave and positive. I'm lucky I was able to do well on the home sale, bank some equity and have a place to live on disability pay.

                I am still dreaming of any sort of remission.
                Jeannie
                "She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown

                IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies

                Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed

                Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.

                Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
                As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.

                Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!

                Comment


                • #9
                  Re: Questions about bladder removal

                  Here is his link http://www.wakehealth.edu/Faculty/Evans-Robert-J.htm

                  I believe he has two offices, but this one is in NC. I am also seriously considering flying to see him. You shouldn't have to lose your whole life cuz of this! I'd get a second opinion from him if I were you.
                  Health Issues
                  IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
                  Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
                  Symptoms:
                  I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

                  Failed
                  Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

                  WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
                  Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

                  Comment


                  • #10
                    Re: Questions about bladder removal

                    Hi I live in Hawaii, and not very many specialists here whom know ic very well. I have thought about seeing Dr. Roberts Evans if worse comes to worse. Can you tell me how I would go about being able to see him if need be? Would I need insurance clearance and a doctor referral?

                    Comment


                    • #11
                      Re: Questions about bladder removal

                      I'm a patient of Dr. Evans, I just got a referral from my urologist to see him. When I called for my initial appointment they just had a cancellation but said it takes a few months to get a new patient appointment with him. Thankfully I live near his office. The good thing is he's with a not for profit hospital system (Wake Forest Baptist Medical Center). I have just been making my regular specialist dr. appointment copays as I did with my other urologist and insurance has covered the rest. The office visits with him are coded as doctor office visits and not under hospital billing. He just did my botox injection today in his office, apparently they check with my insurance first to make sure it be covered. On his website it says he even takes medicaid and medicare. If you do go to see him the company I work for runs a not for profit family house of those coming to the area for medical care. Right now its just $40 a night and North Carolina has low expenses for just about everything compared to national averages. Hopefully the costs of coming to see him will be as minimal as possible. I know I've seen where other national specialist are in private practice. I still can't imagine having to travel to see a doctor but I would if I lived far away after being a patient of his. Let me know if you have any questions.
                      Current treatments: Botox, Bladder installations, Elmiron, Amitriptyline, Gabapentin, Hydroxyzine, Sprix.

                      Comment

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