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  • #46
    Re: Nothing is helping!!!!!!!!!!

    Ohhhh I see! Thanks for the info. I don't think medical MJ anything is legal here in TN, yet. I'll ask my pain Dr about it though.

    MissM - When I tried to reply to your PM's I got a message that said your inbox storage was exceeded. Sometimes that just means you need to delete some sent messages etc. I will try to re-send again later. -- Thanks for the info!!
    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


    • #47
      Re: Nothing is helping!!!!!!!!!!

      **Just updating**

      My pain pump trial at UCLA is scheduled for Jan 3rd, 2017. I've booked my flight already, so I'm preparing, only 1 month away! I will update on my YouTube channel as to what happens with the trial.

      I also sent my records to a new Urologist at Stanford. So I'll be scheduling an appt with him soon to take over my care since I left my last IC doctor.

      Just updating y'all and I emptied my inbox so hopefully I can receive new messages on here again.
      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


      • #48
        Re: Nothing is helping!!!!!!!!!!

        Hurray!! Best of luck to you on the trial MissM!

        I sure hope it helps your pain, nobody should have to live like this.

        Please keep us updated when your new youtube videos are posted!
        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


        • #49
          Re: Nothing is helping!!!!!!!!!!

          Hi. I am a severe case myself. Tried everything to much dismay. My doctor says I am his worst case and we work together to try and find new stuff. If I research something, he will go along as long as it's legal. To which I must say, marijuana is my best friend when it comes to controlling frequency. It takes my 5 minute spasms and shuts it off almost completely. Like a huge vacation. Pain comes and goes. I don't leave the house much. But I wanted to tell you my Botox experience before you travel that path. It was my last hope. Got it put in while awake. HUGE mistake! My bladder has the capacity of about a quarter cup when completely full. I was screaming on the table from the doctor stretching my bladder for the Botox injection. Afterward, I had excruciating pain for four and a half months. Then it eased off slowly as the Botox wore off. Did not help the frequency or urgency at all. Bad experiment for me. I have had this for over ten years. It does get better but a cure would be awesome.

          Comment


          • #50
            Re: Nothing is helping!!!!!!!!!!

            Bmalarki, I know the case in German forum, the woman had very small bladder like you after shrinking during the years of IC. She was not diagnosed early enough.. But she started at one point using Uropol (Uracyst) instills, and she told she was surprised that after some time, 1 or 2 years, dont remember, the bladder size actually improved!
            IC is sort of eating our bladder wall, making it inflamed and bloody and red, my case even visibly. Me and my uro both saw it 3 years ago during in office cysto, I did not even need hydro for it! I had had not diagnosed IC 3 years until that point... So, I started first with Gepan instills, every week, then every 2 weeks, then evey month. 2,5 I years later uro wanted to do new cysto: and my totally bloody and inflamed bladder looked white and like new inside. I would call it miracle, while many cases IC is not so far like mine was, I mean visible by eye, and now it was so good like nothing there! I know inside layers can still be inflamed, but def less and also I believe Uracyst is somehow heeling the broken places.
            You have practically nothing to loose, as I see, I mean, you already tried Botox. Please find a way to start it, and continue, even if you do not get quick results.
            I still need medications: I take Tramadol every day twice and Tamsulosin, and also Amitriptylin, which takes the burning away. Have you tried those 3?

            Comment


            • #51
              Re: Nothing is helping!!!!!!!!!!

              Bmalarki...I'm in the same boat as you...had IC 15 years now, tried everything & nothing has worked. I can't leave the house much either. On my better days I always try to hike & get some sunshine. Just do what I can when I can. Thank you for sharing your experience with Botox. I am so sorry you had to suffer such pain for 4 1/2 months. You were so brave to try it!

              It's interesting because Botox is one treatment I never tried. I was willing...but 3 Urologist have told me if pain is a major factor, Botox is NOT worth the risk. They warned of possible severe retention up to 6 months. I said noooo thank you. I know Botox has greatly helped a lot of IC'ers w/ frequency, but from what the Docs tell me (& what I've read from some IC'ers feedback)...when Botox goes wrong, it goes really wrong.

              Have any of you been to see a Dr Robert Evans for severe, long-term resistant IC?? My Dr's are asking me to go see him. He's 2 1/2 hours drive from me in Winston-Salem NC. I'm skeptical he would have any tricks up his sleeve since I've tried everything at this point. But I hear he's very dedicated to helping patients obtain a better quality of life.

              Krist656...Uracyst is an installation medication correct? Is this a newer installation med or has it been around awhile?

              Sorry for all the questions. I swear sometimes my head is spinning trying to think of things I haven't tried.
              Last edited by jeanniebug; 03-20-2017, 04:25 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!!

              Comment


              • #52
                Re: Nothing is helping!!!!!!!!!!

                Originally posted by jeanniebug View Post
                Bmalarki...I'm in the same boat as you...had IC 15 years now, tried everything & nothing has worked. I can't leave the house much either. On my better days I always try to hike & get some sunshine. Just do what I can when I can. Thank you for sharing your experience with Botox. I am so sorry you had to suffer such pain for 4 1/2 months. You were so brave to try it!

                It's interesting because Botox is one treatment I never tried. I was willing...but 3 Urologist have told me if pain is a major factor, Botox is NOT worth the risk. They warned of possible severe retention up to 6 months. I said noooo thank you. I know Botox has greatly helped a lot of IC'ers w/ frequency, but from what the Docs tell me (& what I've read from some IC'ers feedback)...when Botox goes wrong, it goes really wrong.

                Have any of you been to see a Dr Robert Evans for severe, long-term resistant IC?? My Dr's are asking me to go see him. He's 2 1/2 hours drive from me in Winston-Salem NC. I'm skeptical he would have any tricks up his sleeve since I've tried everything at this point. But I hear he's very dedicated to helping patients obtain a better quality of life.

                Krist656...Uracyst is an installation medication correct? Is this a newer installation med or has it been around awhile?

                Sorry for all the questions. I swear sometimes my head is spinning trying to think of things I haven't tried.
                Dr. Evans is well known in the IC community --- I live in Oregon, which is clear across the country from him. It might be worth it to see him at least once --- or perhaps ask your doctors to contact him for advice.

                Uracyst is Chondroitin Sulfate Sodium and yes, it's an instillation --- but not approved by the FDA at this time. Its available in Canada. Like other medications, it helps some ICers, but not everyone.

                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


                • #53
                  Re: Nothing is helping!!!!!!!!!!

                  Originally posted by jeanniebug View Post
                  Bmalarki...I'm in the same boat as you...had IC 15 years now, tried everything & nothing has worked. I can't leave the house much either. On my better days I always try to hike & get some sunshine. Just do what I can when I can. Thank you for sharing your experience with Botox. I am so sorry you had to suffer such pain for 4 1/2 months. You were so brave to try it!

                  It's interesting because Botox is one treatment I never tried. I was willing...but 3 Urologist have told me if pain is a major factor, Botox is NOT worth the risk. They warned of possible severe retention up to 6 months. I said noooo thank you. I know Botox has greatly helped a lot of IC'ers w/ frequency, but from what the Docs tell me (& what I've read from some IC'ers feedback)...when Botox goes wrong, it goes really wrong.

                  Have any of you been to see a Dr Robert Evans for severe, long-term resistant IC?? My Dr's are asking me to go see him. He's 2 1/2 hours drive from me in Winston-Salem NC. I'm skeptical he would have any tricks up his sleeve since I've tried everything at this point. But I hear he's very dedicated to helping patients obtain a better quality of life.

                  Krist656...Uracyst is an installation medication correct? Is this a newer installation med or has it been around awhile?

                  Sorry for all the questions. I swear sometimes my head is spinning trying to think of things I haven't tried.
                  Yes! I actually know many of his patients. He is known to be a great surgeon, if all else fails here in CA, id even consider flying out to see him. I'd say since you're so severe, it might be worth a try getting an appt with him.
                  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


                  • #54
                    Re: Nothing is helping!!!!!!!!!!

                    try wormwood green black walnut hulls and cloves tincture? im on my about 50th thing ive tried and that seems to be working. parasites?

                    Comment

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