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  • #1

    Help! I don't know what I have.

    I don't know where to start. I have had bladder/urethra problems since about 1997. I used to get frequent UTI's (for about a year) and was given a cystoscopy in 1998. The infections stopped, but ever since the cysto I have had an on/off weirdness that seems to originate around the end of my urethra. I can't even say it hurts but it is something I am almost always aware of. It does not burn when I use the bathroom but sometimes after I go it seems more irritated. It also seems to bother me if I sit or lie down (i.e. car or movies) for an extended period of time or if I drink too much of anything - especially water. I think this may just be due to using the bathroom more. I have since seen two urologists, one about a year ago who basically told me I was crazy or had 'eaten something bad' ??? and another last month who performed another cysto and found nothing except that when the catheter(?) was placed (to check my output, i think?) IT HURT SOOOO BAD. He said that was not normal. Does anyone else have this pain? Like I said before, I don't 'hurt' with this really, but it is VERY annoying and is slowly driving me crazy!!! This urologist gave me something called Flowmax. He instructed me to take it for 2 months and reschedule. Any ideas? I appreciate your letting me vent!
    What I Fear, I Create!
    Tags: None
  • #2
    I think the Flomax is a good idea. What it does is to relax your urethra so it's easier to urinate. And it sounds like if the Flomax doesn't solve the problem, he will try something else since he wants a follow-up visit.

    Sending warm healing thoughts,
    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

    • #3
      Hi there, I just wanted to welcome you to the boards! I was just wondering if there are any plans for a cysto/hydro to see if you have IC?

      Good luck,
      Jess
      Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

      Comment

      • #4
        Thanks for the posts. I am confused about the 'hydro'. The first cysto I had, they wanted to fill my bladder but the doc said I seemed too sore. (Apparently it is NOT NORMAL to scream during this procedure!) I was told I would be given something local, but if I was it sure didn't work. The most recent cysto I had he didn't fill my bladder either. Is that what you mean by 'hydro'? He said the inside of my bladder looked good. Could I still have IC and he just couldn't tell from that? Also, he said after using the catheter, that my bladder didn't empty 'perfectly' but it wasn't that bad. Is that normal or should I expect him to check further into that? Thanks SO much!
        What I Fear, I Create!

        Comment

        • #5
          What you had in your doctor's office was a cystoscopy. The bladder "collapses" --- something like a balloon --- when it is empty, so usually sterile water is put into the bladder to allow the doctor to see your bladder lining.

          Hydrodistention is stretching the bladder and is done with anesthesia in a hospital setting.

          My IC bladder looked completely healthy and normal with the office cysto --- the IC was apparent when my bladder was distended.

          Sending healing thoughts,
          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

          • #6
            I had a lot of urethral burning and irritation when I was first diagnosed with IC. I still have it now on occassion, and it is really bad if I have a UTI. I know what you mean about things feeling not right there, oversensitive or strange.

            I can't tolerate anything in my urethra when I am awake, even with lidocaine. For me, the in-office cystoscopy was very painful. Same with catheters (even small ones).

            My bladder looked normal too when I had my in-office cysto. But when I had a cysto/hydro later, my bladder was small and scarred.

            Take care,
            Nicole

            Comment

            • #7
              Thanks for your help. My doc also looked at me like I was nuts when the catheter hurt. I have already realized one important fact - I MUST get a new doctor! Neither urologist has ever suggested a hydro/cysto to me or even mentioned IC. I discovered this site on my own after realizing that it seemed certain foods made me hurt. My worst pain ever was a few weeks after a CT Scan. I didn't sleep for three weeks! After reading this site, I think it was the dye. Also, swimming in chlorinated water is something I can't tolerate. (Does anyone know how to keep the water out of a swimsuit???) If so, PLEASE let me know!!! Again, thanks to everyone for listening!
              What I Fear, I Create!

              Comment

              • #8
                i hope you feel better soon grouphug
                Medicine taken daily or as needed:
                1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
                2. MS.Cotin 100mg 3x daily
                3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
                4. Fentanyl 100 mg Change every 48hrs.
                5. Gentamicin 80mg install after each rescue treatment
                5 Leviquin 500mg self start as needed.
                6. Klonopin 1 or 2 daily as needed.
                7. Prosed/DS as 1 every 6hrs as needed.





                I have IC, but IC doesn't have me anymore!

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