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Going to be having more surgery-IC HAS spread

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  • Going to be having more surgery-IC HAS spread

    Hi everyone,

    I have been in terrible pain in the urethra region along with the abdominal pain the last four weeks. Saw my urologist who did the augmentation and the ileo-conduit on me yesterday. He tried to do a cystoscopy but due to the immense spasms and pain could not stand it beyond the initial squirt of water. BAD NEWS-the Interstitial cystitis has spread to my urethra. I WISH that the urologist would have taken it out when he took out the bladder. I am being booked as an emergency so should be soon. I am sooooooooooooooooooooooooo uncomfortable and have to sit like in that commercial "I should have used Preparation H" while on one cheek, and with my legs crossed most of the time. Luckily the break-through oxycodone is helping somewhat.

    I wish everyone the best in their struggle with this disease, I wish I was diagnosed and treated when I was 21 instead of 41 grrrrrrrr.
    God Bless you all, I enjoy using these posts and it helps to keep me sane in my hours of pain.
    Thanks for being there.

  • #2
    i didn't realize that ic could spread like that.
    i thought it was just in the bladder. what caused you to think it has spread to your urethra?
    did the uro tell you this. i thought that ic was not progressive i guess i was wrong. i totally hate this disease!


    • #3
      Yvonne: Warm gentle hugs headed your way. I hope you can have your surgery very soon and recover without incident.

      And for Sapp:

      Sometimes after a bladder has been removed, the interstitial cystitis can move to the urethra, which is why, in many cases the urethra is also removed.

      IC is only rarely progressive. I for one have had diagnosed IC since 1975 and my symptoms have been stable all of that time. I have flares, and have had many hydrodistentions, but most of the time I feel good.

      Warm hugs,
      Stay safe

      Elmiron Eye Disease Information Center -
      Elmiron Eye Disease Fact Sheet (Downloadable) -

      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:


      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


      • #4
        Yvonne, glad they will finally take the urethra- the sooner the better! I think that once it is out you will feel 100% better! I hope you have an uneventful surgery and recovery. When I had my cystectomy they took out the urethra at the same time. I remember immeadiate relief from the pain as soon as I woke from the surgery. In fact while I was still in the hospital I would throw things on the floor on purpose just to experience being able to bend over without pain! Judith [img]biggrin.gif[/img]


        • #5
          Hi Sapp,

          Yes the urologist told me that I am a rare case that the Ic spreads to the urethra if not taken out. I have a horrendous case of IC with treatment being delayed so long that there was so much damage done.

          Thanks Judith and Donna for your encouraging words of wisdom, really appreciate them. This surgery is going to be so minor for me after the augmentation and the ileo conduit surgery.
          Sorry I posted twice, was in a pain haze at the time.

          God Bless you all.


          • #6
            My ic is also in my urethra they are going to take my bladder out and my urethra out.
            I can somewhat tolerate the bladder pain a lot more than the urethral pain, it is terriible the only thing that helps is oxycontin, I thank God everyday for pain medicine, that sounds kina funny. But anyway I am so sorry you have to go back a second time, Good Luck---Love,Janelle---


            • #7
              I couod have sworn I posted to you regarding this. It must have been pulled for some reason. Anway, I am having my bladder removed on June 14th. I am having him inspect my urethra to see if it's worth keeping for the Neobladder. If not, I will have him remove it and do an Indiana Pouch on me, which is an internal pouch that you catheterize from your abdomen 4-6 times a day.

              Good Luck Yvonne!
              "Never take, I don't know how to help you as an answer."

              [email protected]



              • #8
                Hi Kara,

                Thanks for the post, yes you have responded to this before but thanks again. The doctor's dispute is still going on here so they are cancelling surgeries left and right and I am sort of playing a hurry up and wait game. I will be phoning my family doctor on Tuesday after the long weekend and get him going on this. I am in so much pain I could scream right now. The doctor's realize that they should have taken the urethra out so are feeling really embarassed about the whole thing. I had dental surgery on Friday so my mouth is sore, my bottom is sore my abdomen is sore from the IC grrrrrrrr.

                Kara, I am so pleased you are getting the neo-bladder and they may be taking out your urethra. GOOD-LUCK to you KARA, I am thankful that they will be doing the surgery and you will then be able to have your life back.