Do all urologists recognise IC as a disease?

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I've recently been suffering from right sided pelvic pain, with some blood in urine, nausea, burning urine. More recently frequent urination. Had loads of tests all negative. Was supposed to have a Cystoscopy under local on Monday, but didn't happen as was too painful, so having it tomorrow under general. Someone on here suggested I have IC, & looking into symptoms they do match. But my urologist hasn't mentioned it, just stricnosis of uretha, but have also read that some ppl don't recognise it. Just wondered if anyone else has had similar experience? Do you think I should mention it to urologist? 

Thanks

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10 Replies

  • Posted

    Hi Mogsy, it took me years to get a diagnosis, and then it wasn't in my area I had to travel and pay to see a private specialist, so you are certainly not alone, I was constantly told it was all psychological and I was just depressed, when in fact I had ic amongst other things. I would certainly mention it to your urologist, I wish you lots of luck, please let us know how you get on.
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    • Posted

      I'm paying privately as it is! Had these symptoms for 5 weeks now. After being fobbed off by A & E. It just seems if the diagnosis is unusual they don't wanna know! All they keep going on about is how it's not cancer or anything sinister! I wasn't even thinking along them lines! Just want to know what's causing pain & not to be doped up on heavy painkillers all the time! And to be able to work.

      May I ask what were your systems & where did u go to get diagnosis?

      Thanks for your support.

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    • Posted

      Hi, I went to the spire hospital in

      Leeds, got a diagnosis straight away after over 10 years of being fobbed off

      They don't seem to want to know unless you have something that could kill you, they don't seem to understand how hard it is to live with such a painful

      Condition. I have severe pelvic pain especially after passing water I don't have the frequency though, everyone seems to have slightly different symptoms. Hope you get some answers very soon, all I can say is keep on at them I wish I'd been more forceful years

      ago. My thoughts will be with you.

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  • Posted

    Hi Moģsy63. Ive had IC for 5 years, and its a horrible disease. I was quite a while before i was diagnosed. I have the usual frequency, pain when voiding, and i get a horrible pain in tbe vaginal area. Ive had three cystoscopies and never experienced any pain with them, although after the last one i didnt rest for a couple of days and ended up in A and E in the middle of the night with heavy bleeding. Ive been very lucky as i havnt had a bad flare for 2 years.i hope everything goes ok with you. It can be a very painful thing.and some doctors dont seem to recognise it.
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    • Posted

      Did u have your cystoscopy under local? I haven't had a diagnosis of anything yet, the only thing he has mentioned is adhesions & stricnosis of uretha.

      Just the symptoms add up.

      Thank you.

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    • Posted

      Hi Mogsy, no I had a cystoscopy about 11 years ago it showed nothing at all it doesn't with everyone but it doesn't mean you don't have ic, my urologist diagnosed it just by my symptoms. Good luck today, hope all goes well.

      Best wishes Christine

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  • Posted

    Hi Mogsy. No i never had any anaesthetic at all, and didnt feel any pain, only a slight nip when they took a biopsy. Dont worry if you have one, but remember to take it easy for a day or two. I foolishly took our very boisterous labrador for a walk the same day.
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  • Posted

    Hey mogsy, just wondering how things went, and how your dealing as I have had a similar experience a couple years ago. 
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