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  • Long suffering

    Hi! I’m 68 y.o. Female. I was diagnosed with IC over 20 years ago. I was in remission for quite a while but it has reared its ugly head in the last 6 months. I am having more symptoms, ones I didn’t have before. I don’t understand the Vulva and external pain and burning I’m feeling. I need to find a urologist but honestly I’ve got PTSD over it. My trips to the Urologist started when I was 10. First cystoscope in the office😳. Any advice would be welcome. Thank you!

  • #2
    Hi there, So sorry to hear the old symptoms are back, and that they've brought a new friend with them. You sound a lot like me as I've had IC that long, although mines never gone into remission sadly. I've had to try and control it via a strict diet as after being messed around so badly by my Uro's I couldn't stand the thought of going back to them again. Sadly I'm not in the US so can't recommend much, but I'm sure somebody will be along very soon with some good advice.

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    • #3
      to the IC Network.

      Our childhood experiences can have a real effect on us for our entire lives. It's unfortunate that you had a bad experience so young.

      Are you following the IC diet? That can be the most important treatment for IC. You could also keep a detailed diary for a few weeks, listing everything that goes in your mouth, how often you urinate and about how much, activities, and pain levels. Sometimes that will identify problems we aren't aware of.


      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


      • #4
        Hi, Mollie I have the same pain as you do. Mine includes severe itching in my urethra. It could be nerve entrapment. I have IC for over 20 years. I self Cath. Please try to go to urologist. Maybe have a friend come e with you to help ease your fear of going. I am in pain mgmt. Which helps. Good Luck.
        Last edited by Toniann2340; 10-28-2021, 02:30 PM.

        Comment


        • #5
          Originally posted by Mollie Page View Post
          Hi! I’m 68 y.o. Female. I was diagnosed with IC over 20 years ago. I was in remission for quite a while but it has reared its ugly head in the last 6 months. I am having more symptoms, ones I didn’t have before. I don’t understand the Vulva and external pain and burning I’m feeling. I need to find a urologist but honestly I’ve got PTSD over it. My trips to the Urologist started when I was 10. First cystoscope in the office😳. Any advice would be welcome. Thank you!
          Have you been able to see a urologist? If it would help, you could check to see if there are any female urologists in your area. Also --- it's very important to keep in mind that you are an adult and you don't need to have any test or procedure if you don't feel comfortable about it. And you can ask 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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