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  • Frustrated

    I am sitting here just so sad, angry, frustrated. I know I have many things to be grateful for--I have a wonderful pain management doctor who really does get what IC actually means and a family that truly supports me and loves me in spite of this freakin disease but I have been blasted with the flare from hell! I feel like all I do is go up and down and it is taking a toll on me. I had been doing so well for so long--I was able to substantially cut back on my pain meds--but for the past 2 months or so I never know what the pain is going to be. I fight going up on my pain medicine because that is like admitting the remission (my own version of remission) is over! Yesterday I had a bladder spasm that made me pull off the road it hurt so much. I have had IC for over 25 years and I guess this is just one of those days we all just want to scream ENOUGH! There is nothing I haven't tried from instills,elmiron,PT you name it and I have tried it. I just want to cry right now. I can't imagine a life where I did not have to think about IC every single day. As I write this I realize that the truth is when it does get better and the pain lessens, sure we all need to be vigilant about diet and what ever else works, it does not take over my life and I am not going to let it do it now! So I am sorry to have taken up this space but sometimes writing it out, especially to the people who really understand what it means just helps SO much! The ICN board helps me so much--Thanks everyone--I know this post is pretty disjointed but so am I right now! You all are the best-Malone

  • #2

    I am sorry you're feeling so crummy.


    • #3
      I'm sorry you are struggling so much. I totally understand what you said about thinking about IC every day. I too would love to be freed from obsessing about peeing and bathrooms every day. I hate just looking at a toilet...however, I love them at the same time because they provide relief.

      I wish I had better words to comfort you.
      Last edited by Toto; 08-16-2011, 11:13 AM.

      Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

      Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

      Other conditions: Migraines, allergies, mild IBS.

      "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)


      • #4
        I wish I could help.

        Stay safe

        Elmiron Eye Disease Information Center -
        Elmiron Eye Disease Fact Sheet (Downloadable) -

        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.

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        Diet list:

        AUA Guidelines:

        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.

        Anyone who says something is foolproof hasn't met a determined fool