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  • #16
    Thank you for sharing your story. I am glad that you haven't been in constant torment for over 40 years.

    Have you had hydrodistention after its effects wore off after two years?

    It is starting to look like my trigger is ejaculation...

    Comment


    • #17
      After a full good day, everything is back to horrible again. Either it is just flaring up at random, or it is reacting to me eating cheese, or my bladder can be soothed by camomile tea which I had a lot of two days ago, but not yesterday...

      Comment


      • #18
        If I eat food X and then have a symptom-free day, does it mean that food X doesn't trigger IC flares for me? Or is it the case that foods that trigger flares can sometimes not trigger them?

        Comment


        • #19
          If there's a food or drink that you're not sure about, my suggestion would be to try a small amount every day for four or five days -- there are a few things I can get away with occasionally, but if I repeat several times it can build up and cause a flare.

          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


          • #20
            Thank you, Donna!

            As you can imagine, it would have taken forever for me to figure this (that just because a food hasn't caused a flare, doesn't mean it won't cause flare in the future) out myself.

            How long does a typical flare (caused by accidentally eating the food that gives one flares) usually last? A day or two, a week, or longer?

            Also, how long after consuming the food would one expect to start having a flare?

            Comment


            • #21
              Is it the case that once one finds triggers for one's IC flares, and avoids those food triggers, one's bladder will then feel normal until one accidentally consumes one of the triggering foods?

              You have probably already heard about this: It looks like IC is caused by positive ions in urine
              https://pubmed.ncbi.nlm.nih.gov/32677166/
              Perhaps this means that eventually there might be a cure... I wish they were to tell us what we can experiment with in an attempt to neutralized those positive ions.

              The paper below is informative and is shocking. It might be a good idea to let newbies know about it...
              https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4708543/
              Last edited by BillB; 01-25-2021, 06:57 PM.

              Comment


              • #22
                Donna, you wrote the following to another person: "It's not unusual to have the discomfort in the urethra, which is very close to the vagina. Also --- when I had my first cystoscopy in my doctor's office, my bladder looked healthy and normal. At that time (1975) the major diagnostic tool for IC was hydrodistention --- when my bladder was distended under anesthesia, the IC showed its ugly self and I was diagnosed. Happily, hydrodistention is not used as much for diagnosis as it was then."

                Would you know what is used for diagnosis if not cystoscopy and hydrodistention?

                Thank you for your kind help, Donna!

                Comment


                • #23
                  I am getting a lot worse.

                  I took amitriptyline for the first time. My bladder felt like it was bursting and made it impossible to fall asleep even after I took amitriptyline. I couldn't lay still in bed - the torment was too much and made me feel like running away from it, and the least I could do was to get up. But then I felt so sleepy and drugged that I had to move back and forth in my chair to help me keep my eyes open (I see that this isn't easy to explain/describe). In any case, by 4:30 am the bursting sensation felt a Little better, enough to allow me to fall asleep. I fell asleep because this was a second sleepless night + the 10 mg of amitriptyline. I woke up multiple times, and felt very little relief even right after urination. Nevertheless I was still able to eventually fall asleep every time. When I woke up at 8:30 am, the bursting sensation got a little worse making me unable to continue trying to sleep.

                  Is that what a flare is suppose to be like? I am 98% ready to begin taking steps to arrange my suicide.

                  I live in Canada, but I think that I can visit one of the specialist doctors in the US who publish papers about IC. Of course this will be challenging to arrange. If IC is incurable, is there a reason to do that, though?

                  Is it the case that if I try a cocktail of Prelief, Bladder Rest, Bladder Builder, and Cystoprotek, there is a chance that I will be able to sleep? And then eventually I will figure out what is causing flares for me and I will stop having flares?

                  This condition is worse than tinnitus/ear ringing, as it is bad enough to make sleep out of the question...

                  Please help.

                  Comment


                  • #24
                    Originally posted by BillB View Post
                    Thank you for sharing your story. I am glad that you haven't been in constant torment for over 40 years.

                    Have you had hydrodistention after its effects wore off after two years?

                    It is starting to look like my trigger is ejaculation...
                    Yes. In fact, when symptoms worsen and none of my usual remedies don't work, I go in for another hydro --- in the 46 years I have had over forty. This doesn't help everyone --- I feel fortunate that this does help me.

                    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


                    • #25
                      A diagnosis can be reached by symptoms, plus ruling out other potential problems.
                      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


                      • #26
                        Donna, may I ask you to answer the question below
                        Originally posted by BillB View Post
                        How long does a typical flare (caused by accidentally eating the food that gives one flares) usually last? A day or two, a week, or longer?

                        Also, how long after consuming the food would one expect to start having a flare?
                        When you say "a flare", do you mean that you are unable to sleep and are in constant torment 24/7?

                        Comment


                        • #27
                          Also what about
                          Originally posted by BillB View Post
                          Is it the case that if I try a cocktail of Prelief, Bladder Rest, Bladder Builder, and Cystoprotek, there is a chance that I will be able to sleep? And then eventually I will figure out what is causing flares for me and I will stop having flares?

                          Comment


                          • #28
                            Also, what about
                            Originally posted by BillB View Post
                            Is it the case that once one finds triggers for one's IC flares, and avoids those food triggers, one's bladder will then feel normal until one accidentally consumes one of the triggering foods?
                            Thank you, Donna

                            Comment


                            • #29
                              Is there anything that I could ask a urologist for, or ask a family doctor, or ask a doctor at the hospital emergency for that would alleviate this torment enough to allow me to sleep?

                              Comment


                              • #30
                                I'll try to define the terminology I use with my IC. I identify a flare as an increase in urinary frequency and discomfort. A trigger is something that can cause me to flare. When this happens, there are several things I do. Many ICers will add a small amount of baking soda to water and drink that --- I have high blood pressure so I only do that if other things don't work. For me, Tums can be a substitute for the soda and it usually helps me. I also drink more water; I have a tendency to not drink enough so if I have a flare I make sure I'm drinking 6 to 8 cups daily. There are some medications that can help with night-time frequency --- if you're having bladder spasms, a smooth muscle antispasmodic might help. I can usually get out of a flare in a day or two.

                                In addition to IC, I also have nerve damage resulting from surgery to remove cancer tissue almost ten years ago so I am treated by a pain specialist. I have an implanted pain pump that releases morphine directly to the damage area, along with pain pills for breakthrough pain --- I'm sure that this also lowers my IC discomfort.

                                In emergency room I suggest you ask if something can be ordered that will help relax your bladder muscles. If you are in severe pain, it's okay to ask for pain medication, but not a good idea to ask for a specific one (that's what addicts are known for doing). It's unfortunate that addicts have made it so difficult for us, as well as for doctors, who are limited on what they can order. If you need pain control, I suggest you ask for referral to a pain specialist.

                                I'm sorry to have rambled on here. I hope I've answered at least part of your questions.

                                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

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