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  • No answers for a year :(

    I want to share my story to see if anyone can relate, or share advice.

    I am 21 years old. This problem started 1 year ago.
    My ONLY symptom is frequency. I have not been in any pain. The only pain is the agony of having to pee every 15 minutes.

    I have tried: bladder instillations, changing my diet, elmiron, "natural" pills, nerve stimulation therapy, bladder training...

    NOTHING HAS WORKED.

    the weird part is:
    my frequency is very, very sporadic and unpredictable. Some days I can wait 4 hours without going and live a very normal lifestyle. But all of a sudden, out of no where I can't even hold it for 20 minutes, I will pee non stop.

    I'm confused, why are there days where if I don't drink a sip of water, I have to pee every 15 minutes (and when I pee, i always go A LOT), and the days that I'm feeling good, I can even have a cup of coffee and not worry about peeing.

    I feel like if my bladder was damaged, the frequency wouldn't fluctuate like that. I live day-to-day wondering if it'll be a good or bad day.

    I know I'm lucky that I don't have any pain, but it's so embarrassing and disruptive on my bad days. I am going out of the country to Israel next week and I am so nervous about traveling.

    Does anyone have any ideas?? I doubt it is stress related because at times when my stress level is very high (finals weeks) it was fine....but over winter break where I'm very relaxed, it has been horrible. There is no rhyme or reason to it.... anyone with any advice please help. THANKS!

  • #2
    Have you been tested for pelvic floor dysfunction? When I start having frequency issues without pain it is usually due to my spasms in my pelvic floor from straining when constipdate. that is just me, but it is something you can investigate.
    current meds- ditropan 5mg xl, neurontin 300 mg. zanaflex for pelvic floor spasms Most meds, IC meds included, cause me bladder pain

    previous med- elmiron( nothing after 8 months), atarax ( to sleepy), ditropan ( retention), Cymbalta, cystoprotek( worsened flare) has helped many others, aloe vera ( worsened flare), lyrica( irritated bladder.

    interstim implant (reduces my ic pain)January,2007

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    • #3
      One thing you might try is to keep a detailed diary, showing time of day, everything you eat and drink, activities, and frequency. You just might be able to pinpoint something that's causing the problem.

      Warm hugs,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      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.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      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.
      [3MG]

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

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      • #4
        Crescent89, my situation is exactly like yours. As far as the response about the pelvic floor, for me, my pelvic floor is fine (but everyone is different). I know exactly what you mean. It's so frustrating because I don't know what each day will hold either. I pretty much eat and drink the same things every day and I could have several awesome days and then some bad days. I just don't get it!!!!!!!!!!!!
        Meggan
        Mom to Sarah, 14 (Best kid in the whole wide world!)and My kitty "Noodles"

        Diagnosed in 2009.Mild IC-Frequency and Urgency and IBS

        IC Diet

        Non-IC Meds: 300mg Lamictal, Xanax .25-1.0mg, Zanaflex 8mg, Celexa 40mg

        IC Meds-Currently none. Tried Elavil 10mg-Couldn't tolerate the sleepiness. Elmiron-couldn't stand the side effects
        .


        STAY AWAY FROM SODA AND ANY CARBONATION

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        • #5
          I'm not 100% sure, but I think that my pelvic floor is fine too. That's what my doctor said. How do you get it tested to be sure?
          It just boggles my mind, I will pee and then 20 minutes later have a full bladder again. (without drinking anything). How is that possible? I can hold it a bit longer, it's just awfully uncomtorfable to have a full bladder and not empty it. (as everyone here knows). I've never had a UTI...there was no tramautic experience.. just one day I started peeing massive amounts and it never stopped. (I've also had an internal ultrasound to see if my bladder is emptying properly..which is it).

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          • #6
            I did the biofeedback with a physical therapist to test my PF. As I said, it was fine. Once I found out it was fine, I didn't even bother to continue with the PT. And this is where I get confused..I keep reading that PT can be very helpful with IC. But, doesn't that mean it really only helps people with Pelvic Floor Dys. associated with IC? If my PF is fine and it's obvious that my symptoms are strictly from the irritation to my bladder, I don't think PT would help me and that's why I haven't bothered to do it. I didn't have any trauma either. I had a few UTI's in my early 20's (which I think was because of sex). But other than that, I've had no other problems. All I know is, I'm very grateful I have a mild case compared to many women on this board. I almost feel guilty sometimes feeling sorry for myself when they are going through so much more.
            Meggan
            Mom to Sarah, 14 (Best kid in the whole wide world!)and My kitty "Noodles"

            Diagnosed in 2009.Mild IC-Frequency and Urgency and IBS

            IC Diet

            Non-IC Meds: 300mg Lamictal, Xanax .25-1.0mg, Zanaflex 8mg, Celexa 40mg

            IC Meds-Currently none. Tried Elavil 10mg-Couldn't tolerate the sleepiness. Elmiron-couldn't stand the side effects
            .


            STAY AWAY FROM SODA AND ANY CARBONATION

            Comment


            • #7
              meggan, so you're main symptom is frequency too? and is there any rhyme or reason to when your bad days are, or are they just random and sudden like mine?
              I am trying so hard to get to the bottom of this but it just seems like nothing is working. I too am grateful that I am not in pain, but the frequency is too disruptive. My aunt told me it may be due to low estrogen, because she had similar problems. She got put on a new birth control with a higher level of estrogen and it helped a lot. I got my hormone levels tested but I don't know if I'm too young to have any weird problems with my hormones. They seem to occur in women who have children or going through menopause, much older than me. But it was worth a shot.

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              • #8
                Hello, I was like you since childhood, until about a year ago. I firmly believe I've had IC since then. I have developed pfd and vv in my 20s, but they were due to an event I can pinpoint. I don't know what caused all my bladder problems. I still have frequency as my main symptom -- it used to be my only symptom before my other pelvic issues. I too used to think there was no rhyme or reason to my bad days. I must have had mild IC then. Now as my symptoms have gotten worse, I do notice triggers in food and stress. I find that sometimes weather affects my symptoms, and car rides or other events that have me sitting for a prolonged period.

                I also suggest you try keeping a diary of the things Donna suggested, but especially how often you go, and the amount. I don't know if you've ever measured how much urine you pass, but I was shocked to discover that my bladder holds about 1/4 of the urine a normal bladder should. What you think is a lot might not be.

                Now I can usually identify a trigger, but not always. Sometimes I have a flare for a reason I can't identify.

                I wish you luck with your travels. These days I have trouble even going a few hours from home, so I think traveling so far is very brave of you.
                ----------------------
                -Amanda
                34 years old, bladder symptoms all my life
                diagnosed with PFD and VV October 2009; IC May 2010

                Current meds:
                Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
                Other past treatments:
                IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
                Tried and didn't work:
                Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture

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                • #9
                  Crescent89,
                  No, there seems to be no pattern. I mean, if I were to eat something like tomato sauce or orange juice, then yes, I would suffer (of course, I don't eat those at all for over a year now.) But for example, I drink coffee every day which I know is a big no-no. But I don't understand why if it's supposed to bother me, why don't I have bad days every day? This has been the hardest thing to give up. I will go five days feeling great and then have two really bad days. I have also heard about hormone levels being a problem. I find it also difficult to find things to try just because of frequency and urgency. Most of all the info I locate or even on these boards deal with the pain aspect. However, as I said before, I am very grateful I don't have that problem and so sorry that so many do.
                  Meggan
                  Mom to Sarah, 14 (Best kid in the whole wide world!)and My kitty "Noodles"

                  Diagnosed in 2009.Mild IC-Frequency and Urgency and IBS

                  IC Diet

                  Non-IC Meds: 300mg Lamictal, Xanax .25-1.0mg, Zanaflex 8mg, Celexa 40mg

                  IC Meds-Currently none. Tried Elavil 10mg-Couldn't tolerate the sleepiness. Elmiron-couldn't stand the side effects
                  .


                  STAY AWAY FROM SODA AND ANY CARBONATION

                  Comment

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