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Not dx yet, see Uro tomorrow 1st time

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  • Not dx yet, see Uro tomorrow 1st time

    Hi Everyone!
    I've been coming to this forum for a few days now, it helps to read all of the posts although I'm confused about the lingo everyone is using. I've been going to my General Dr for 3 months now complaining of UTIs. He gave me 2 rounds of Antibiotics although no infection was showing up. He said that I probably have IC and should see a Urologist. After checking out the ICN website, I started the IC Diet immediately. For 2 days I felt a lot better, less pain, less frequency. However last night I started with the pain again and this morning I have pain and frequency issues. I've been taking prelief with my meals too.
    I see the Urologist for the 1st time tomorrow. What should I expect? Can I ask to be put on some of the medications immediately? I'm assuming he'll schedule a cyctoscopy in the next few weeks to confirm the dx but I'd like to get started on a tx plan.
    Can I use regular advil or tylenol to help with pain or will it make it worse? I also have some tylenol with codeine but I'm afraid it may make things worse.
    Thanks in advance for all your advice!

  • #2
    HI! I hope you don't have IC just because it's SO much to deal with. IF you do.....I'd definitly have a plan of action after diagnosis. Lots of us take Elmiron (it takes a while for it to work but if it works for's great stuff!) Elavil for spasms and frequency (both are prescriptions). Things that you can try that aren't prescriptions, that I use are: Freeze dried AloeVera (you can buy though this site), and Azo (Azo you can get at most
    pharmacies) and it's a quick fix for bladder pain as it's an anesthesia for the bladder.
    Advil (any Ibuprofen product) is bad for IC. I can take Tylenol once in a while for pain but not every day or it will cause bladder pain for me.
    Do you take any vitamins or supplements? Some of those can cause bladder pain. I can't take regular calcuim (I have to use the chewable type) or I get spasms. I can't take Vit. C. either.
    Adhereing to the IC diet is one of the best things you can do....figure out what causes flares and what doesn't. Some things if you eat it 2 days in a row will cause flares for me.....where as if I only eat it one day won't cause any's Crazy!!! Anyway.....There's other meds out there, see what your dr. says. Hopefully he's an IC dr. and knows what to try. Good luck!! 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's amazing stuff!!:woohoo:


    • #3
      I'm not taking any vitamins right now, I just got off of taking Cipro(which did nothing to make me feel better) and I stopped all the trigger foods. I have to take Iron Supplements because I have anemia, I don't think they are bothering me, they are a prescription one called Repliva. I'm only drinking water now, I'm going through caffeine withdrawel. I never drank much coffee to begin with, only decaf, but then I would have a diet coke for lunch. Now I'm only drinking water. Since I only started having really bad pain this week, I'm new to the diet and will have to see what works and doesn't work. I'm eating a lot of turkey sandwiches right now. Really, I'm not very hungry, being in pain kind of takes away my appetite. I'm trying to make sure I'm drinking a lot of water because I do think it helps with the pain, even though I'm running to the bathroom all the time.
      My husband is not on board with this IC dx. He's out of town right now and wants to see what the Urologist says tomorrow before he's convinced I have IC. After the appointment I plan on buying some of the books at the IC shop to learn more about IC.
      Thanks so much!


      • #4
        Hi Allies40 - I was also treated for a UTI for about 2 months (even though I had no bacterial growth in cultures) before my uro started suspecting IC. Some of the antibiotics that he tried made me feel worse - specifically levaquin and cipro. When he started suspecting IC he had me schedule an appointment with an IC specialist in Philadephia and he prescribed Elavil. The Elavil has really dulled my discomfort and has helped with frequency. The IC specialist confirmed that I had IC and increased the dosage of Elavil. He did not recommend Elmiron for me (he said something about it taking a long time to become effective and only helping 30% or so of the people - I don't remember the exact percentage). It sounds like Elmiron has helped some of the people on these boards so I am sure it is worth asking your doctor about. Since you also live in the Philadelphia area, feel free to send me a private message if you have any questions. Sending you healing energy and wishing you well...linda.
        Sudden onset of UTI like symtoms on Dec 27, 2006.
        Diagnosed with IC on March 12, 2007.
        Current Meds: 50mg Elavil
        "Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown