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IC started when I was 6 years old.

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  • IC started when I was 6 years old.

    So I was going through records one day from my old primary and saw that age 6 I was complaining about my bladder. I'm 34 now and it is horrific. I've been doing long term abx and I'm getting such severe side effects I have to stop the third one I've been put on, all I do is sleep. So basically on the list of things to do, besides surgery, I've done it all. Pelvic floor PT, Interstim, Pain medication, Medical marijauna, every medication, and a very limited diet one in which I can only drink water. So I can say the only thing that really helped in rapaflo but I have hyper POTS and it brings my blood pressure down even more. I have a crummy cardiologist. If I go to the bathroom enough I feel empty, then I sit down and 30 mins later it is burning and urgent and frequent. That's not long. The main thing helping is a heating pad. But it is burning me. I have no choice. I also have chronic blood cancer and I need rest and sleep; very important. I live in Florida, the capital city, I really really need a good IC doctor that is more experimental and won't go over the diet again. I need someone. I tried the microgen but like I said the abx are causing very severe side effects. I've tried aloe vera pills as well, didn't notice a difference.

  • #2
    I used to frequent the boards here but have gotten away from it when diagnosed with cancer. I am surprised things are as slow as they are here. Used to be many people replying. I am sorry for your IC and I know how you feel. I have had frequency for many years myself. Always have had a painful bladder. Going every thirty minutes to an hour makes my bladder very sore. It is very hard to find a good IC dr. I actually stumbled across one by accident when the large urology practice kept rotating drs. I am sorry for your cancer. It seems we have much in common, unfortunately. lol,

    God bless you.

    Comment


    • #3
      I'm probably sounding like a broken record, but sometimes we can identify problems by keeping a detailed diary for a few weeks. Then we can review the diary and compare it to symptoms --- I also have cancer and it's a hard thing to deal with. My IC was diagnosed 45 years ago --- the cancer 9 years ago. I hope you feel better soon.

      Warm hugs,
      Donna
      Stay safe

      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


      • #4
        Miss Donna, I have known you for quite a while and NO you do not sound like a broken record. You are kind and compassionate young lady. You are wise and I thank you for caring about people. God bless you.

        Comment


        • #5
          Thank you!

          Stay safe

          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


          • #6
            Have you ever ever heard of Botox injections for IC pain? I was diagnosed many years ago and the pain was unbearable! I first had a spinal stimulator put in my lower back (twice) complete waste!! Then I went to a pain doctor and was on every strong pain medication made- nothing worked! I thought my life as I had known it was over until someone I knew told me about his friend who would fly to the U.S. from Asia to get Botox shots for his IC?! I asked my Urologist about it and he said yes, they do that. Insurance doesn't pay for it so they don't advertise it?!? I started doing it 11 years ago and it changed my life!. After getting Botox injections in my bladder I was able to have a baby and reclaim my life!! You are very much in my prayers! I hope you find some much needed relief for your pain🙏🏻

            Comment


            • #7
              Originally posted by SLTA View Post
              Have you ever ever heard of Botox injections for IC pain? I was diagnosed many years ago and the pain was unbearable! I first had a spinal stimulator put in my lower back (twice) complete waste!! Then I went to a pain doctor and was on every strong pain medication made- nothing worked! I thought my life as I had known it was over until someone I knew told me about his friend who would fly to the U.S. from Asia to get Botox shots for his IC?! I asked my Urologist about it and he said yes, they do that. Insurance doesn't pay for it so they don't advertise it?!? I started doing it 11 years ago and it changed my life!. After getting Botox injections in my bladder I was able to have a baby and reclaim my life!! You are very much in my prayers! I hope you find some much needed relief for your pain🙏🏻
              Thank you for sharing your success --- and to the IC Network. We learn more from other IC patients than from any other source.

              Huge hugs,
              Donna

              Stay safe

              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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