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This is Scary!!!!!!!!

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  • ihurttoo
    Wow! I am stunned! I cant believe you almost had to go thru another major op, when this total other thing could be causing the trouble! But, even still, it cant get my mind around that this false urinary tract isnt the culprit of the urgency. I seriously dont know WHAT to think! I am sure you are in the same boat! However, I agree that since the VV is a pretty minor surgery, I would definately do that first, (that is if they cant do them at the same time?) If the cant do it at the same time, then hopefully the VV will take care of things, but if it doesnt, at least you have a solid lead to go on and dont have to start over from ground zero again.

    I am still stunned! I am actually speechless! (And that's big for me! )

    I hope that things work out and your pain-filled days will be behind you soon!


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  • tigger_gal
    wow Kara thats a lot to digest. I hope that this next one will end your problems for you.

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  • Kara29
    started a topic This is Scary!!!!!!!!

    This is Scary!!!!!!!!

    I had a meeting with my pelvic pain specialist today regarding why I was left over with "urethral urgency" pain after my cystectomy and bladder reconstruction. He examined me last time (3 months ago) and told me that I was mistaken when I told him that my urethra was 100% removed. I tried to explain that over and over that my urethra was taken out and that NONE of it was left in. I remember before my reconstruction last May I talked extensively to my reconstructive surgeon about not leaving any of it in because I did not want trouble later on with phantom urgency. My reconstructive surgeon reassured me that he removed the whole thing after it was done. I had the operative notes sent to this doctor and he STILL thought I had part of my old urethra still in there. He wanted to schedule me for surgery to remove and resect the rest of this urethra that he STILL thought I had. I tried to tell him today that it did not exist to remove. I even had him look right at the operative report while I was sitting there and I pointed out the exact part of the operation that describes the full urethrectomy. He shook his head and said over again that I still had 2/3 of the urethra in there.

    I was getting ready to cry when I asked him if he would examine me again.

    He examined me again. looked at my Mom and said "SHE DOESN'T HAVE ANY PART OF HER URETHTRA...SHE WAS RIGHT!"

    At that point I almost jumped off the table to dance around the room half naked!

    What happened is that I have a false or hidden urinary tract that was not found during my operation. It eventually needs to be closed off. So he was going into the false tract when he examined me last time and this time he figured it out.

    If I hadn't insisted upon re-examination. I would have been headed for a very unneeded operation.

    IN THE END...........I have a Skene's Gland on the right side (the left one was removed) that right Skene's Gland is what is causing me that feeling of URGENCY. I am wondering if a Vestibulectomy would have been all it took all of these years. We still won't know until I have this done and that won't be until September. This is removed via a Vestibulectomy. He wants to triple check himself with my Surgeon before he goes on to help me with this THING that had run my life for 10 years. It's a relatively simple surgery compared to another reconstruction.........Hard to believe a tiny gland can cause SO MUCH Pain!

    How SCARY!!!

    I am absolutely tired right down to my bones.

    Last edited by Kara29; 04-27-2007, 09:55 AM. Reason: spellling