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New Here With Possible IC

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  • New Here With Possible IC

    Hi there

    My name is Gem & I'm new to the forum. I've been having a problem with my bladder since just before Christmas last year. My Dr seems to think I might have an inflamed bladder, I'm not sure whether that's the same as IC? Some websites seem to think it is & others think it's not. Here's my story:

    It was just before Christmas last year when I had a UTI. Unfortunately I wasn't able to get to a Dr for a couple of weeks because of the constant bank holidays, the surgery was closed a lot & then I went on holiday for a week. I had to put up with symptoms for 2-3 weeks. My only symptom was that I constantly needed the toilet. I couldn't ride a bike up a hill without feeling as though I was going to have an accident.

    Finally got to a Dr when I returned from my holiday & he diagnosed me with a UTI (Did a dipstick test) & prescribed me some antibiotics. That seemed to clear it up.

    Then it came back. So, off I went, back to my Dr. Told him the frequent urination problem had returned. He did another dipstick, another positive result (White blood cells in urine), so another prescription of antibiotics.

    This time it didn't clear it up so well & it got to the point that on my way to work, I'd have to stop a few times just to use the toilet. I'd catch my first bus which took 30 minutes, then I'd have a wee stop, my second bus was only 20 minutes but by the time I got off that I was almost weeing myself! I was in some pain because of the pressure & had to walk to work with my legs crossed or I would have wet myself! It was awful. I called my Dr for an emergency appointment but could only see the worst Dr in the entire surgery. He told me that I had an over active bladder & told me there was nothing he could do for me. I just needed to learn to hold it. According to him, everyone feels urgency like that! (He did a dipstick & apparently it was clean)

    I waited a few days before making an appointment with my favourite Dr, she's always been wonderful with me. I saw her a lot when I was suffering with depression & an eating disorder (I am now recovered). She did a dipstick straight away & said there was definitely WBC in it again & she had no idea why the other Dr would just send me away like that! More antibiotics.

    I've seen her quite a few times now, the frequency just keeps coming back. She eventually decided to give me a 3 month supply of antibiotics & for the first week, they helped, but then it was as if I wasn't taking them. She told me to not bother with them any more & has now sent a referral to the urology department. Unfortunately there is a long waiting list so I could be in this predicament for some time.

    The thing is.. I'm not sure why I have this problem! I've searched on the internet for answers, hoping something would jump out at me. I'm really hoping it's not IC or an inflamed bladder.

    My Dr has now put me on Ditropan, but failed to tell me that I could be taking this for the rest of my life... I'm on 5mg 4 times a day & it's helping a little with the frequency but mostly it's just making it harder to urinate. I get a wicked dry throat - last night I couldn't eat my dinner properly, food just balled up in my mouth & I couldn't swallow without a gulp of water! I can't sweat either so I have to be careful while walking my dog in the sun. I'm not sure whether to take it back down to 3 a day or ask my Dr to put me on something else. Will my bladder get dependent on it? When I come off it, IF I ever come off it.. Am I going to wee myself?? Will I have any bladder control? I asked my Dr this & she just looked at me like I was an idiot & told me that she was trying to treat my symptoms.. Why would I come off it?

    I also have:
    PCOS - although without any actual cysts, just a hormonal imbalance which is treated with the contraceptive pill (Ovranette)
    IBS, which is controlled with Spasmonal or a heat pack - although I haven't taken any Spas lately because I'm not sure whether it will interact with the Ditropan.
    I am on a 3 day dose of Nitrofurantoin just in case there is a UTI still there.

    I've had WBCs in all of my urine samples but no bacteria is present when the sample is sent to the lab.
    I, currently, have no pain, just pressure & constantly needing to urinate. I can't even go 5 minutes without needing to go.. Sometimes I need to go, while I'm going - if that even makes sense?! The pressure of being desperate is still there, no relief.

    I do have a rather TMI question.. This whole time I've had some itchiness in my vaginal area (mostly near my clitoris & inside labia minora). I've been treated twice for thrush but it didn't seem to clear it up.. In fact it gave me more discharge. I've requested a gyn exam to rule out any kind of infection 'down there'. My Dr thought I was silly when I suggested there might be a relation between my frequent urination & a possible problem with my vaginal area. I've done a lot of reading online though that says bacterial vaginosis can sometimes cause frequent urination. Maybe I'm just hoping for a simple explanation & easy fix?

    I'm really sorry for the essay! I'd really like some advice on all of this so thank you if you've read it all.. I really appreciate it.

  • #2
    I wish I could answer your questions, but you will need to work with your doctor to find a solution. One thing you can do is to give the IC diet a try. You'll find a link to the latest food list in my signature below.

    I do think it's possible that you could have IC.

    Sending healing thoughts,
    Stay safe

    Elmiron Eye Disease Information Center -
    Elmiron Eye Disease Fact Sheet (Downloadable) -

    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:


    Diet list:

    AUA Guidelines:

    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.

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


    • #3
      Hi Donna, thank you for that link A few of those things I have to avoid because of my IBS, but oddly I don't think I've noticed an increase in symptoms after eating foods on the 'bad' list.

      Is it possible to have IC with just frequent urination as the only symptom? I have the odd ache but I always assume it's my IBS flaring up! This certainly won't be a fun journey.. I've noticed people with PCOS or IBS tend to be more likely to have IC & I have both!

      My Dr is doing her best atm but I get the feeling she is getting annoyed at seeing me every week at the moment with a new complaint about the medication she's given me. I've got pills lying around the house that I've had to stop taking because they've not worked. I've ran out of money! Even if I did go back to her & she prescribed something else, I couldn't afford to buy it.

      My brother keeps telling me I should come off the ditropan & just deal with needing the toilet every 30 minutes.. He doesn't understand that it's not every 30 minutes.. It's ALL THE TIME! I can't walk to the shops without needing to wee, I can't exercise properly because it makes me need to wee.

      Sorry for the rant.. I'm just exhausted from all of this. I'm lucky that I've managed to get a few good nights of sleep but the days are still the same. Not sure if ditropan is even helping right now. How effective is it supposed to be?


      • #4
        Hang in there

        I read your story and you have the same symptoms I had before I was diagnosed with IC (12/06). I was lucky and had a Dr. that was well informed about IC. It only took about 1 year for my diagnosis. My IBS didn't occur until 6 months later. I saw another Dr. that specialized in that also and found I was sensitive to gluton, soy, eggs and dairy. The best I can tell you is to follow the IC diet and see if it helps. There is hope. It has taken me awhile but I'm not IC diet sensitive anymore. I do avoid trouble foods for my IBS. I also have Endometriosis and have pain from that (can make it hard to tell which is bothering me). I am very bladder sensitive to medications, so I'm really careful with that.