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  • #16
    For information, please click on http://www.ic-network.com/patientlinks.html

    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


    • #17
      i have never tried gelnique, but if it is an anti-spasmotic drug it might be making u retain..
      I cannot take any of the drugs that are for overactive bladder as they put me in retention and i cannot pee at all.
      I hope u are better by now.

      Comment


      • #18
        for those of you who have been give pain relievers

        how did you convince the doctor that you need them?

        was it your regular doctor who prescribed them or the urologist or gynocologist?

        ive been given tylenol 3 but it has caffeine in it, is that ok?

        would appreciate any advice about this. I cant seem to get any doctor to give me something strong enough to make it through the day without major pain.

        Comment


        • #19
          I recently tried Gelnique, and it did nothing for me. Detrol worked much better. I was disappointed because I really wanted it to work.

          Comment


          • #20
            Hi Donna,

            I cannot find The Patient Handbook anywhere on the site, where can I find it I'd like to purchase it.

            Thank you,
            Shamay
            Live Well
            Love Much
            Laugh Often!




            Diagnosed:
            Dec 2005
            Diagnosis:
            IC
            Cysto/Hydro:
            Dec 2005
            Other Conditions:
            Anxiety, Insomnia, Chronic Sinusitis, Bursitis of the hip, Chronic Fatigue Syndrome, PFD, Inflamitory Arthritis of the neck, Allergy to Yeast and Dairy
            Meds for IC:
            Prosed/DS as needed which works much better for me than Pyridium, Prelief, Coffee Tamer, Claritin 5mgs and sodium bicarb as needed.
            Alternative Treatments
            Physical therapy for 8 weeks, Acupuncture (just started).
            Other Meds:
            Skelaxin (as needed)
            Didn't work:
            Detrol LA (didn't help symptoms), Pyridium 200mg isn't working very well anymore.
            Tried:
            Elmiron (Major Dizziness), Hydrodistention (Greatly exacerbated IC symptoms), Urised (hard time breathing), Ditropan (bladder pain the next day), Rescue Instillations - Lidocane, sodium bicarb (all over body rash with itching),

            Comment


            • #21
              It's at http://www.ic-network.com/patientlinks.html

              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


              • #22
                I just got this message when trying to find it....

                Uh oh! You have reached a page which has been recently moved or is no longer available on our website. Please use the links below to navigate our website!
                Live Well
                Love Much
                Laugh Often!




                Diagnosed:
                Dec 2005
                Diagnosis:
                IC
                Cysto/Hydro:
                Dec 2005
                Other Conditions:
                Anxiety, Insomnia, Chronic Sinusitis, Bursitis of the hip, Chronic Fatigue Syndrome, PFD, Inflamitory Arthritis of the neck, Allergy to Yeast and Dairy
                Meds for IC:
                Prosed/DS as needed which works much better for me than Pyridium, Prelief, Coffee Tamer, Claritin 5mgs and sodium bicarb as needed.
                Alternative Treatments
                Physical therapy for 8 weeks, Acupuncture (just started).
                Other Meds:
                Skelaxin (as needed)
                Didn't work:
                Detrol LA (didn't help symptoms), Pyridium 200mg isn't working very well anymore.
                Tried:
                Elmiron (Major Dizziness), Hydrodistention (Greatly exacerbated IC symptoms), Urised (hard time breathing), Ditropan (bladder pain the next day), Rescue Instillations - Lidocane, sodium bicarb (all over body rash with itching),

                Comment


                • #23
                  I just clicked on http://www.ic-network.com/patientlinks.html and it took me right to the index of the patient information.

                  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


                  • #24
                    I'm wondering if it's worth trying gabapentin again. I took it for two months (can't remember the dose, probably a lower dose) and I think it sorta made me feel different for a few days, not much though, then nothing. Wondering if it's worth trying a higher dose. Problem is I've been on Lyrica, which worked a treat, but then it stopped. I built up a tolerance to it sadly.

                    Since Gabapentin is similar, I'm worried it'd do the same, but then again it is slightly different to lyrica so maybe that could mean it'd effect me differently. Is it worth another shot? anyone been in this position before? I might see a different doctor, the one I'm seeing is running outta ideas. Only med that's had any effect long term is Tegretol and that only works on the urgency/frequency. Not pain. Just something I was wondering, any input would be appreciated. Thank you!

                    Comment


                    • #25
                      When I go to the pain page, it says the same thing to me - no such page.

                      Comment


                      • #26
                        Hi. Im new to ICN. What is tha patch...and what is the injection in the tailbone. I just do BI treatments and elmiron and I am CRYING bc I am tired of being in pain and afraid to make love to my husband.

                        Comment


                        • #27
                          Hey, The doctor I went to in Bloomington Minneapolis Minnesota said I have PFD, a-long with all of my other pain...so the list goes on he wants me to do PFT with a PT . He had no problem giving me pain meds of Tramadahl s.p. 50mgs for 60 days. and then he tells me to have a trial interstim put in for IC, IBS, CPP, PFD, and CBackPain curv in spine. He tells me they are all linked through the spine and this Interstim will help, I have 3 months to decide. I have an appointment with the pain center here on the 8th and my first PT for PFD on the 11th. I also have bursitis in R-hip and knee, FMS, endometrosis, have had 2 posterier repairs, a burch, sling, and bladder tack, CFS and depression, TAH ...etc...
                          I hope I have some good news when I am finished with the pain cl...I have not heard any good things about this pain clinic in ND

                          Comment


                          • #28
                            I also had ot quit wearing tampons and recently discovered that them as well as pads have chlorine in them so I went to my nearest health food store and bought me some chlorine free pads. Made my periods much more tolerable this month. Have had two in the last two weeks. Have PCOS so kind of goes with the territory.

                            Comment


                            • #29
                              Hello Donna, I have tried to get my doctors to relieve my pain,but have had no success. Do you have any suggestions for me? I live in pain everyday. Thank you!

                              Comment

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