Not sure if this is the right place - please help

Posted , 4 users are following.

Hi everyone.

I recently had an issue where I cannot stop the feeling of wanting to go to the toilet. This also happened back in September where after many negative UTI results I ended up going into the emergency and they gave me an IV of antibiotics and bam it went away. Fast forward to a month previous to today and I started having the same symptoms again. Negative UTI, no pain whatsoever, some slight protein in urine, one and off feeling of wanting to urinate (it comes and goes all the time), the feeling that I can feel something contracting downstairs, sometimes a heavy left hand side of uterus. Does any of these symptoms sound like IC? My scans have come back all clear - some very minor renal bagging (apparently physiological). Im heading to the urologist this week but was hoping for some direction.  

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  • Posted

    Hi...I'm sorry you are going through all of this. It's so difficult to get a decent diagnosis unless they do a procedure called cystoscope. This apparently can tell if there are ulcerations, lesions, irritations along the bladder wall. You say you are seeing a urologist soon. You may want to ask about it. I do know that some folks have difficulty knowing the difference between interstitial cystitis and the inability of the bladder to empty fully...which some docs say is not proper cystitis. What I would recommend is a doc who understands what IC is, what to look for. Otherwise, you are spinning your wheels. You say you do not have pain but feel a contracting. You will want to discuss this with the urologist. I know for me when I have a flare I get pain or cramping in my pelvis area which sometimes goes around my sides to my back. It is highly unpleasant. I do my best to stick with a diet that avoids foods that may cause a flare. The idea is to stay away from acidic foods and keep to an alkaline diet whenever possible. These are some of the things that help those with IC. That said, my gyn did ask how often I go to the bathroom. Remember, cycstitis is when urine is not passed as it should. For me, when I am in pain it can come out slowly, burning a little, even. I sometimes go more frequently than other times. Anyway, this is only my own experience thus far...for me, I've been dealing with this since September and it has been a learning experience from various sites, discussions with my doc and forums like this one where women discuss what they are going through and how they are being treated. Anyway, I wish you well. I hope I haven't managed to confuse you further! Take care.

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    • Posted

      Thank you for replying. I will request a cystoscope when I go today. I'm in Australia & I'm seeing a very well renowned urologist which is promising. She is the only person in Australia that does Botox for overactive bladders so she seems like she knows her stuff.

      No I don't have any pain whatsoever which makes me think that it may not be IC. Almost everyone I read about complains of pain.

      I'll report back with what she says today

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  • Posted

    Ok, thanks. I'd be very interested in what the doc has to say. I'm glad you are seeing a good specialist. It can make all the difference. I am in the states (God help us) and for those of us fortunate to have health insurance, (for now) the idea is to go to your primary doc first and then if what is going on is beyond their training, to a specialist. Whenever I see my gyn all she wants to do are bladder installations. This is when they put a catheter-like thingie into the bladder and let loose a med made up, in part, of heparin, in order to coat the bladder wall and stop the pain. The thing is, if you get relief you must do it seven more times for it to be effective. That means I'd have to go back eight weeks in a row and I believe some form of anesthesia is needed...probably not anything heavy duty. Regardless, however, this prospect did not thrill me at all...so I do my best to stick with the diet and drink lots of water. It is not easy and I wish I didn't have to mess with this, yet there it is. There is no set remedy for IC from all I have learned, merely treatments like the one I just mentioned. There's no cure for it, either, apparently. So you see, I am not convinced what you have is IC. I hope you got good news from your urologist. Well, thanks for writing back! 

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  • Posted

    Hi lion heart

    Sounds like the symptoms I had for almost 2 years..finally after seeing an urologist he confirmed that I had an overactive bladder.Now I am on medication for that and everything seems good..

    Good luck..

    Hope this helps

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  • Posted

    Hi Marylh & elizabeth 52006

    So i went to my urologist appointment yesterday.

    She has booked me in for cystoscope and bladder installation on the 11th of Jan. Althought she hasnt confirmed that its IC, she has started me on a proper IC diet and to be honest, its been 24 hours and I feel so much better! If I continue like this I probably wont get the cystoscope or bladder installation done. Has anyone had exeriences with these procedures - good and bad? She wants to check out my 'minor renal bagging of the kidneys' so Im in two minds about getting it done if I am feeling ok. What is everyones thoughts on this?

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