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  • Cystoscopy and no hydrodistention

    Hi all, new to this site, and a great site it is by the way!

    I have had bladder and urethral pain for over a month now and been to so many doctors I have lost count and four ER visits with pain shots and "I don't know what to tell ya". Never any bacteria in my urine, always clean. No rise in white blood cell count, everything normal. I had such severe spasms and pain, worse at night that I started getting very depressed to the point of wanted to pack my bags and leave so my family would not have to deal with me anymore. One doctor actually made a joke and said "Don't do a hari-kari on me now just hang in there until the antibiotics kick in"....which they never did, symptoms just got worse.

    They just kept giving me antibiotics, not knowing what this was. Then last week, for fear I probably by now had yeast, took an oral diflucan and the next day I was 50% better, frequency and spasms. I was going to the bathroom every 15 minutes after laying down at night, until about 4:00 in the morning until the pain pills wore me out and I finally would sleep for a couple of hours.

    Yesterday, I went to the urologist for a cystoscopy and everything was fine. All this time after a CT scan the doctors knew I have "many kidney stones, both kidneys, one is 1.5 cm". So after not seeing anything yesterday, the urologist said I was probably passing kidney stones, but if certain foods bother me take Prelief and gave me a bunch of samples and Prosed. Saw the info on the Prelief about IC and am wondering if this is what he should have been looking for? He did not do hydrodistention, so was wondering if IC would have at least shown something on cystoscopy without hydrodistention?

    Have a history of UTIs and GU problems since I was young, kidney stones since the 80s, antibiotics worked when I was younger, but these "whatever they are", have been happening more and more frequently in the last 5 years.

    Sorry so long, but first posts always are I think?

    Thanks for any insight! Kewpie

  • #2
    I had much the same experience. Lots of UTI's, Kidney stones and generally just trouble with my whole Uriniary system. After all the antibiotics known to mankind, nuclear scans, IVPs and Cystos I finally had a urologist do the cysto/hydro and there it was. Not only IC but Hunnars ulcers. The cysto/hydro also releived my symptoms for about 8 months. Lots of Ic patients use the hydro/cysto as a treatment. Sure worked for me. Sue

    Comment


    • #3
      First of all, welcome to the IC Network.

      In an office cysto, without hydrodistention, an IC bladder can look normal and healthy --- mine did. But when it was distended under anesthesia, the IC was apparent.

      Are they having you strain your urine? If you are indeed passing tiny stones that could be your problem. If you're not doing this, I suggest you discuss it with your doctor. It should be fairly easy to determine if your periods of increased pain coincide with passing of stones.

      Prelief is not just for people with IC; what it does is to reduce the acid in food --- so there are many diagnoses it could help.

      You can read more about IC in our Patient Handbook at http://www.ic-network.com./handbook/
      There's information there about symptoms and diagnosis.

      Warm welcoming 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

      Comment


      • #4
        kewpie!!

        I am having very similar problems to yourself!! Diagnosed with stones and had really bad spasms of pain in the bladder andf i was in agony for weeks took 2 months off work and was very deppressed, then my gp gave me an anti-spasm med and it was like magic!! although it never cured anything the pain was bearable again. i have had IVP and Ultrosound am now having Cysoscopy soon so will know more then, I have whife pus cells and am on constant antibiotics at the moment. so hang on in there i am sure we wil both get sorted eventually. lol.

        Comment


        • #5
          Thanks for your great responses!

          Following my post I went to my first "GYN" appointment since all of this started. I told him that he was getting me on the "up side" of all of this and that after the cystoscopy, I was still almost pain free in my bladder and urethra. His exam (which was excruciating) showed I was very swollen and inflamed vagina and cervix. I told him the other doctors had done Pap smears but because of the pain they could not get very far up. Will see him next Wednesday to go over the findings. He wants to do a laparoscopy if they are negative and I have a lot of past surgerys, two c-sections, gallbladder (old school surgery all the way across the top of my abdomen), ureteral surgery from a stuck kidney stone. May be adhesions or an inflammatory process going on he thinks. BUT, am feeling great since taking the Prelief and bottled water, very low carbs just oatmeal for fiber (I have diverticulosis). NO pain pills yesterday, first day, great sleep!!!

          Wish me luck and thanks! Kewpie

          Comment


          • #6
            BTW - I am afraid to call my urologist and ask about hydrodistention, but will after this GYN problem is cleared up - and - if the bladder symptoms come back again.

            Kewpie

            Comment


            • #7
              I am going in for a Cysography in March!! am dreading it and they have said it will under a general?? i would prefer to be awake during this really but dont think they will allowe it??

              they say they will do a urethal dilatation?? and have a good look around too!!

              Has anyone had this done with a local??

              cheers


              debzxx

              Comment


              • #8
                debzx, When I have a hydrodistention I choose spinal anesthesia. I prefer to be awake --- plus I get horribly nauseated with general anesthesia.

                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

                Comment

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