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What to do about this flare?

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  • #16
    Happy Birthday! If it makes you feel any better its also my birthday and i am in a flare and expected to be at work in 4 hours. I would definently get some pyridium and take that three times a day with lots and lots of water just relax at home and watch something on TV it will help take the focus of your pain. When you feel a bit better try maybe going to a physical therapisst for it or maybe get an instillation. Somethings got to work!

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    • #17
      Try to stay calm and prioritize

      So sorry to hear of your troubles, like many others here, I have long and lovely periods of remission, but it always comes back. It is so frustrating because no doctor can tell us why we flare or what to do to prevent it. Stress is a big flare trigger for many and your upcoming move may have at least contributed to your relapse. With respect to your boyfriend, most men just don't get it, because very few ever suffer in that area the way women do. Remember, your health, both body and mind are the most important things you have. You must put yourself before any relationship, or job or anything else. Your #1 priority must be to regain your health, and everything else will fall into place after that. When I have a flare, I like to start a journal and write down the treatments I have tried and those I would like to try, and document what is working and what is not. One new thing I am trying now is a rescue instill. It is just xylocaine and heparin. You might want to look into trying some of these. I also failed DMSO. So far, I have had no pain with the rescue instill so I will try at least 6-8 weeks of these. Also, If you have called a urologist's office and told them you are in so much pain that you are crying and sleepless, and they still put you off for several weeks, then you should get out the phone book, and try to find a doctor who is compassionate. That long of a wait is not acceptable. You are in crisis and should be seen on an emergency basis. One final thought, I agree you should be checked for a UTI, but, I also think you should see if you could find a doctor who will try a course of antibiotics. This is somewhat controversial, but studies have shown that because of the compromise to the epithilial surface of the bladder and its coating, IC patients are much more vulnerable to even a few bacteria that could have been introduced during sex. Most uro's will throw away your specimen without culturing it unless it is teaming with bacteria, because the assumption is that a few bacteria are just a contaminated specimen, and are causing you no harm. The specimin should always be submitted for culture. If you are not allergic and tolerate antibiotics fairly well, it would probably be worth a try to do a course of a broad spectum antibiotic like levaquin. If that does not help, then you can move on to the next thing. I have also started taking the Desert Harvest Aloe caps. I think they are helping. (No miracle cure, but any help is better than none). A few things to try. And I agree, totally follow the diet. Drink nothing but spring water until you start to improve. And believe in your heart that you will get better, and you won't stop trying until you do.

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      • #18
        Hi Sara,
        I know the hopelessness you feel. But the way your feeling will get better, you have to believe it. Force yourself to feel better emotionally. Rent Will Ferell movies, he is hillarious, laugh out loud and you will begin to feel better. Have you tried natural suppliments to coat and help heal the tissues of your bladder/urethra lining? Suppliments and a reduction of stress have saved me, they might help you while you wait to see your doctor.
        I take:
        4fish oil capsules a day (coat irritated bladder)
        Glucosamine (helps rebuild tissues)
        MSM (helps rebuild tissues)
        detoxifier ( I take daily detox)
        all of these are at high health
        drink plenty of h2o and try stretching, tums and an ice pack to help take that edge off
        *maybe try a supplent that will regulate hormones
        Say a prayer or yourself, your going to be okay! As far as your man is concered I understand what its like to have your man not understand, theirs no point in getting upset so be happy hes there for you and leav it at that. you must tell yourself it's going to get better and it won't be like this forever , you have too. watch comical movies to life your spirit, when I laugh I feel better.
        God bless and all the best

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        • #19
          I want to know how you are doing? Please check in with us! I hope that you are better.

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          • #20
            Hi good wishes from me ,I have had a bad flare up all this pass week its hard I could cry but doesnt take the pain away,Im on Elmiron as well and Sab-opium and ant-depessions as well, take care of yourself ,Im going for dmso at this hosp this coming tues hope it helps have had that treatment for 10 years or more take care

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