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Been told I may have IC, would value some opinions.

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  • Been told I may have IC, would value some opinions.

    Hi everyone,

    My name is Lyndsay, i'm 22 and from England UK.

    I've just recently come back from some urodynamic testing and I was told they are almost sure I have Interstitial Cystitis. I'm due to speak to my consultant for full analysis of the tests on 24th August, but until then I was hoping to ask the opinions of others as to if you believe I may have this.

    My problems atart 5 years ago when i went on a bus trip with a full bladder thinking I could hold it and after getting off 20 mins later i only just made it to a public toilet before I wet myself. I never had any bladder problems at the time, in fact I could hold it like a camel for 10 hours at a time, but this experience led to anxiety.

    For the 2 years after this I suffered with anxiety badly and although I sometimes felt like i needed the toilet every half hour, i could feel it was because of the anxiety. I did notice my toilet trips were becoming more frequent in general though.

    After a course of counselling, i was able to separate the urgency because of anxiety and the pure needing to use the toilet normally.

    My urinary frequency continued to increase and decrease randomly and i would have months of no problems followed by long periods of urinating every hour. I was told by my doctor I had OAB.

    However, 2 years ago i started having longer patches of time needing to urinate more frequently. Some days i would need the toilet every 30 minutes although sometimes i would just dribble and this could happen for a few days at a time. I was placed on tolterodine tartrate by my GP but it lost its effectiveness after a few months and gave me terrible headaches.

    Things got worse last May when i started leaking urine constantly. Only small amounts, but without exerting myself such as coughing or sneezing. It would just happen whether sitting or standing. I have been leaking ever since. I saw a physio who gave me kegal exercises but said my pelvic floors were good.

    I started getting terrible abdominal cramp, especially turning at night and my bladder feels like its constantly bloated and pressurised. I get pains which throb like a heartbeat deep in my bladder and opening to the urethra. I sometimes have blood in my urine when it has been analysed by the doctors and i have constant patches of very bad symptoms: every 2 weeks to 2 months which can last a day to a week. During this time i feel paralysed by pain, i need to urinate every half hour, i get kidney pain and pass a lot of clear urine. The stabbing pains get worse and i become housebound. Things such as cola or fresh tomato can cause these.

    When i give my doctor a urine sample during this time, the lab says theres no infection but very high amount of bacteria - possibly due to urinary retention. I am given antibiotics anyway to clear it and it does usually make me feel better for a few days.

    JAN-MAR i trialed Toviaz and then Oxybutinin. Toviaz made me need to urinate more and Oxybutinin helped but caused me so much pain as well as sickness.

    At the moment I can only hold 200ml in my bladder before I need to urinate due to the pain and discomfort, not because I am desperate to pee.

    Finally after 5 years i was given a cytoscopy and was told by the nurse it looked like a healthy bladder but I am yet to see my consultant about this.

    I then had a test where they fill my bladder and made me urinate on a special toilet. As it filled up I could feel the pressure and pain building up inside. I got to 170ml before i felt really sore, and by 300ml i had to stop the test because I was paralysed by pain. I have yet to have the full analysis of this test yet either.

    The lady who did the test said she could rule out OAB as i was not complaining of needing to go straight away, but it shouldnt have been painful, and i was in sooooooooooo much pain it was unbelievable.

    It is also much worse the week before my menstrual period and sometimes during it. Sometimes my clitoris is also very sensitive to touch and stings if touched, which is made worse during sex and I also get a lot of pain around my bladder and urethra after sex. About 1-3 days after sex I can sometimes see an increase in my symptoms as well

    I have Polycystic ovaries and IBS which I have had since I was 7 or 8 so i know the difference in pain between these and my bladder problems.

    I'm sorry if none of this makes sense, i would just be so grateful if even one person could give me their opinion as I have been searching for a diagnosis for years and this seems the most likely.

    Thank you in advance and I hope everyone is having a good day today

  • #2
    I can only say I have had most of these symptoms at one time or another with my IC. I hope you can get a proper diagnosis & help soon. The oab drugs were not helpful to me & caused severe drying in my throat. I can suggest that you try the diet as described on this website because it was of great help to me & calmed my bladder down after about a month. I still rely on the diet as one of my main treatments. I hope you can start feeling better soon!!


    • #3
      You need to download the IC diet chart and stay on that diet.
      Certains fluids and foods will cause your bladder to spasm and burn.
      After you get a proper diagnosis you and your uro can find the proper treatment plan , such as DMSO, or Rescue treatments.
      Over the counter meds such as AZO helps some and a heating pad or hot bath will help you to relax.
      Drink purified water, milk is also good for you and you can have vanilla milkshake too. The Ic diet is hard to follow but, it will help eliminate some of your burning.
      Every Icer is different but, most of us know we have to stick with the ic diet at least.
      I hope you find a Uro before August because that is suffering to long needlessly.
      I wish you the best and feel free to ask as many questions as needed.
      Also, look on the internet and educate yourself as much as possible about IC so you can work with your Uro better.
      I learned quite a bit on this forum and going through the net.
      When you see your Uro ask questions get answers find out what he or she thinks what will work for you.
      Make sure the Uro is extremely knowledgeable about IC and is a caring Uro. Let us know how things turn out for you.
      <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>


      • #4
        Thank you bth for taking the time to reply to my post.

        I will have a look at the IC diet and give that a proper go to see if it helps.

        As for the Uro, i can only see him on 24th august because in the UK we dont have health insurance and things as such, we have a national health service which is free to all; paid for by tax. Therefore its a case of waiting until it is convenient for them unfortunately.

        And with my symptoms having got worse, I have been unemployed since january and can not afford private treatment. But i think waiting until then will be worth it just so i can finally find out what's going on.

        I am a little unenthusiastic about my Uro though. Before these tests I mentioned IC to him after my doctor had suggested it and he didnt even consider it. Told me it was usually something older people get and it's proberly just OAB. And that was the top Uro in the whole of England :/.

        On a maybe positive note, I am going to a wedding today in the middle of a flare up of symptoms (been like it since tues) and i'm not going to let it ruin it!

        So thanks again for replying and i'd just like to say, that having had a good look around all the boards that I am overwhelmed by how much support you provide as a community on here


        • #5
          It's not unusual to first be diagnosed with overactive bladder. I hope when you see the uro in August that you will get more answers. In the meantime, I agree that giving the diet a try is a good idea.

          Sending warm healing thoughts,
          Stay safe

          Elmiron Eye Disease Information 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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          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


          • #6
            To lindsay

            What you can do is print out some recently and most accurate studies about IC and give them to your Uro. IC can happen to anyone at any age sex or race. If your Uro doe's not believe this he needs to go back to med school, or at least consult with other Uro's and do research himself.
            Copy some of the IC story's here on the forum there are children and so many others it's sad. This is not just a desease for middle AGED WOMEN there is no known cure. I garrantee you if he had IC or a loved one of his he would sing a different tune. Thier is a women that has IC on this forum that says her Uro came down with IC and is doing a paper on IC, Or something like that. I wish you the best and hope you get better soon.
            <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>