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  • #1

    questions, questions, questions...

    So the PUF test (Pelvic Pain and Urgency/Frequency questionnaire) - I'm almost certain I scored a 15. It perplexes me that people have different combinations of symptoms. Myself, I experience pain and urgency, but not usually frequency. I do go to the bathroom more frequently than my coworkers, but I don't think I go an exorbitant amount. I go on average only once or twice a night. Is this because my body is just different? Are there different mechanisms that cause the different symptoms? My aunt was diagnosed with IC several years ago via hydro/cysto - and she told me her symptoms were only frequency and urgency, not pain. When she's stressed or eats a trigger food, she goes to the bathroom several times an hour and gets little sleep. Could it be that our bladders/brains are reacting differently to the same problem (i.e. depleted/ing GAG layer, etc.). Also, if IC is immune system-related, would that show up in blood tests?

    In my very first post, I mentioned how I had two non-UTIs with negative cultures - yet when I was given Cipro the first time it helped a lot, and Cipro XL the second time it seemed to help even more. Why would I respond to the antibiotics if my UTIs were actually just flares? Is it just because of their possible anti-inflammatory effects? PLUS, when I had another 'flare' two weeks ago on Friday, the pain was so bad I actually vomited. Yet, I had no UTI symptoms like I had previously - no extra pain while peeing, no blood in my urine, and no urgency 24/7 or frequency (every 20 minutes). I'm just confused - I wish I understood this disease more.
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  • #2
    It's very possible to have IC with no severe pain. And yes, antibiotics do have anti-inflammatory qualities so that could easily be the reason you feel better while taking them.

    Are you following an IC diet? That can be very important.

    Warm healing thoughts,
    Donna

    P.S. Your picture is gorgeous!
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
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    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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    Anyone who says something is foolproof hasn't met a determined fool

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    • #3
      I have mild IC thankfully I never had the pain, I had enough pain with menstrual cramps when I was in my late teens in high school to last me a lifetime! I only had the urgency to pee. We are all different & that is what makes it so hard to pin point things. Research, research & research!!!! For me it was talking to others & I also joined Yahoo groups that helped me too. Keeping a good relationship with your doctor is important as well. I started reading every book on women's hormones I could find several years ago & boy have I learned a lot, helped me understand my body even better!

      [FONT="Comic Sans MS"]
      Jen
      Medically diagnosed Post Menopause 9-13, unsure for how long! Have: IC, IBS-C, arthritis, carpal tunnel, hypoglycemia, RLS, seasonal sinusitis, depression, anxiety, infertility, hormone imbalance.

      Please read Screaming to be heard by Dr. Elizabeth Vliet. I do deep cleansing breathing & relaxation morning & night along with doing Yoga everynight now, it's been a huge blessing for my body! Born & raised in Michigan, relocated to Oklahoma in 9/09. Please Don't stop anti depressants or mood stabilizers "cold turkey"!

      http://www.icawareness.com/stories.html

      Jen Meier Cascaddan on Facebook

      Married for 21 years, have 2 cats that are my "boys"

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      • #4
        HI! I totally agree that it's crazy that so many people have different symptoms that all add up to IC! Cipro helps my flares too. My IC specialist said that it does help some...not all....during flares. I'm lucky that it does. My dr. gave me a 30 day supply of Cipro and told me to take it for up to 3 days from when the flare started. That way the antibiotics isn't so hard on the body. I take Probiotics to help counteract the antibiotics. Luckily the MSM has helped tremendously with the flare ups. Good luck to you! Roxie

        Double Spinal Cord Stimulator surgery 8/09
        Unsuccessful MiniArc sling surgery 12/07
        Dx'd Hypothyroid
        Dx'd Chronic Axonal Neuropathy & Myopathy
        June 2007
        Dx'd IC May 2006 (after suffering for 25+ yrs!)
        First Cysto 1979
        First Hydro 1981 (Many treatments since then!)
        Collagin"Durasphere" injections for urethra
        Gall bladder surgery Aug. 2004
        Gastric Bypass Dec. 2004
        Dx'd: Barrett's Esphogus July 2004
        Dx'd: Vaginal Atrophy 2005
        Bladder surgery 2000
        Dx'd: IBS 2000
        Hysterectomy (fibroids) 1999
        Laminectomy 1989
        Dx'd: Degerative Disk Disorder 1989

        For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
        I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

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        • #5
          <<I'm going to try MSM>>

          Is this prescription med? If not, where is it available?

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