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    Hi everyone! My name is Kristi and I'm 26 years old. I was just diagnosed with IC two days ago. It sort of through me for a loop because originally my uro-gynocologist though it might be over-active bladder, so I didn't really read up on IC. So when my doctor told me I sort of just blanked. But I'm the type that if I have something I have to find out every possible thing about it and so far this site and forum have been EXTREMELY helpful! So I thank everyone for that!

    I don't really know quite when my symptoms started- but about 3 years ago I have a major string of UTI's that wouldn't go away, for the most part I've been okay since then but this past summer I started to a feel a little strange, frequent urination, feeling that I couldn't void my bladder completely, pressure in my bladder. I figured it was another UTI so I went to the doctor and they found no infection. A couple months later I was still feeling this off and on so I went to a different doctor and she referred me to a uro-gynocologist. They were concerned about the blood in my urine and my feeling of not being able to empty my bladder- so they scheduled a cystoscopy and cystometry and diagnosed me that day.

    So far I've handled the news pretty well but today I really think it's sinking in and causing a bit more anxiety. I have plenty of questions (which I'll save for different threads!) but like I said this site seems amazingly helpful and everyone seems very supportive.

    Kristi

  • #2
    Hi Kristi,
    Welcome to the ICN!
    I hope that you will find this site a source of information, support & understanding.

    The best suggestion I have for a new patient is to start the diet. It has the best success rate of any IC treatment, doesn't cost a copay, no hassles with the insurance company, and is a positive way to take care of yourself. Here's a link so you can check it out. Generally speaking it takes a few weeks to reach full effectiveness, though you may get relief sooner if you've been eating a lot of trigger foods and take those out first. And hey, who's not starting a new diet for the New Year anyway?
    http://www.ic-network.com/diet/dietcheatsheet.html

    Come here anytime with questions, ideas, thoughts - we understand
    Wishing you better days in 2011!
    Kadi
    Kadi

    -------------------------------------------------------------
    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.
    ------------------------------------------------------


    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest
    "


    Current treatments:
    -IC diet
    -Elavil 50mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic when doing an instillation to prevent UTI
    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!

    Comment


    • #3
      Thanks Kadi! I have started the "bladder diet" a few weeks ago before I was diagnosed to relieve some symptoms and I just stayed away from the big trigger foods (tomatoes, chocolate, caffeine, coffee- oh how I miss you) and I could already tell a big difference! The IC diet seems much broader than the one I was following, but I'm going to try and keep a food journal and see what affects me most!

      Quick question, my doctor wrote me a rx for phenazopyridine, and when I went to look it up it seemed like this was just AZO Standard, which I already have at home. I'll call my doctor to double check, but is it worth spending the money to fill this rx when I already have AZO at home?

      Comment


      • #4
        Hi Kristi,

        Happy New year and of course welcome to here.

        You have a great attitude and I hope you keep that and find treatments quickly that allow you to manage this and live well.

        If I remember correctly the prescription phenazopyridine is 200mg and Azo is 100mg of the same medicine. So it is sort of like Motrin where by prescription it is 800mg and OTC it is in 200 mg Ibuprofen tablets that can easily be adjusted to meet doctors recommendation.

        Mike
        -

        Symptoms: started July 2007

        New pain medication regimen has things under pretty good control for many weeks now. Exercise and eating healthy along with pain control have given me new life.

        Current Symptoms: pain in testicles, penis and general groin area. Other discomfort that is beyond pain, a maddening crazed feeling that defies description. New pain medication has most symptoms under good control.

        Frequency and urgency was a problem the first year or so but frequency is normal now.

        Diagnosed: Prostatitis first then IC by Cysto/Hydro

        Current Meds: Hydroxyzine 25mg 3 x day, Pyridium 200mg 3 x day (off 3-4 days on 3-4 days), Oxycodone, Norvasc (BP).

        Past medications and treatments:
        Protatitis and IC diet strict for 6 months, no change. Still watch diet although nothing seems to help or make worse. Have tried reverse, ate lemons to see if worse but no change at all.

        Meds tried - Amitriptyline, Detrol, Flomax, Cipro, Doxycycline. many other antibiotics, Uroxatrol, Vicoprofen, Elmiron (6 months at $320 mo nothing), Aloe, Cysprotek, Glucosamine, Marshmallow, various oils, tons more stuff to strange and numerous to recount. Hydrodistension for diagnostic was horrible for two weeks after I was sure I must be going to die because nothing could feel that way and let you live.

        Comment


        • #5
          Hi Kristi,
          Mike already answered you about the Azo The only thing I'd add is that sometimes the insurance copay for a prescription is less than over the counter medicines and that it's easier to be reimbursed for prescription medicines if you have a medical flex account (Section 125 plan).

          I'm happy you've already seen improvement from following the diet - it can be frustrating sometimes, but it's something we can do for ourselves to feel better

          Best,
          Kadi
          Kadi

          -------------------------------------------------------------
          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.
          ------------------------------------------------------


          New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
          Source - Pinterest
          "


          Current treatments:
          -IC diet
          -Elavil 50mg at night
          -Continuous use birth control pills (4-5 periods/year)
          -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
          -Pyridium if needed,
          -Pain medicine at bedtime daily, as needed during the day several times per week
          -Antibiotic when doing an instillation to prevent UTI
          -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
          -Dye Free Benadryl 50 mg at bedtime
          -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
          -Managing stress= VERY important!
          -Fur therapy: Hugging the cat!

          Comment


          • #6
            Thanks for the info guys! I think I'll go ahead and fill the prescription since it would be a stronger dose, and I'll even gauge the price. The company I work for is actually changing insurance this month and it's supposed to be better, so I hope that helps with everything!
            I'm trying to stay as positive as I can (nasty habit I picked up from my mother!) So far my case seems mild, which I'm very very grateful for, lets hope it will stay that way!

            Kristi

            Comment

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