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Had my 1st cycsto today

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  • Had my 1st cycsto today

    Well I went to the Uro today and had my first cycsto done. I was so nervous this am. First off I made sure to read all I could on the procedure and get feedback from the ladies that have had it done. I came up with 50/50 some said they had a bad time with it, others said it was just uncomfortable but got threw it.

    Well I am on the side that said it HURT REALLY BAD I was in tears. He said that my bladder looked fine....no cancer and no something else he was looking for. But he did say that this confirms the IC DX. He also told me that I would have some burning afterwards. Well that's a lie....I do not have burning....when I void it feels like I have razor blades in there.

    After he did the cycsto he did yet again another plevic. He pushed up on my bladder and said does this hurt.....does this hurt. At this point I'm coming off the table.

    He wants me to start on another med for the urgency....VESLCARE. Has anyone ever taken that? Does it help?

    Then he told me he wants to see again in 2 weeks to see if this med helps and then I go back in 3 months to see if there is any progress with the Elmerion. If no progress then he is going to set it up for me to do a hydro.

    I'm in a way glad that I did the cycsto cause I know I don't have cancer or anything else.....but on the other hand I hate it cause now I'm in some MAJOR PAIN. I already did the tub thing, I have taken half a muscle relaxer and a pain pill. I can't load up on either one cause I have my 2 lil ones to take care of. Well thanks for listing
    Live your life to YOUR best, and Love to YOUR best!!!



    DX in 03 with Shingles
    Removal of Left ovary due to Cyst in 2005,
    I have had cyst since I started my period as a child age 12
    Hysterecotmy December 06
    IC DX March 07 by PST
    2 "rescue" instills in March 07
    Cyco May 07 confirmed IC
    Uro study June 07
    1st Pain Block July 17,08
    Hydro/Cysto Nov 11, 2008
    12-11-08 was told I had alot of inflamation

    Meds: Allergic to 6 things
    Premarin......taking the gen cause I get it at Walmart for 4$$
    Presique for my drepression :woohoo:
    Abilify for my depression
    Adderall ...found out I'm ADD...makes sense now
    Kolopin for anxiety
    Noroco for my pain
    Valtrex for my shingles as needed

    Sorry if my spelling is off on the meds [/FONT]


    http://community.webshots.com/user/s...host=community

  • #2
    Hi there.
    I am sorry you had so much pain from the cystoscopy. My first one was hell also. The worst pain I ever felt. The next one I had, which diagnosed my IC, I insisted on being sedated. It was so much better!! They really should offer sedation when doing these tests. I mean they sedate for endoscopies and colonoscopies, why not the cystoscopies too!
    Now when I see a new uro or urogyne, I tell them my story and how much pain the cystoscopy caused me and make it known that I will NEVER do it again awake! That way, they wont even bring it up, and if they do, they know I will have to have sedation. It it usually not a painful procedure, but for people with IC, it can be very painful.
    It will get better in a couple days. It will just take time for things to settle down.
    Jen

    Comment


    • #3
      Stac,
      I'm sorry that your cysto was so painful for you. It hurt a lot when I urinated afterwards too. The best advice that I can give you is drink drink and then drink some more water. As soon as I got home from mine I downed 2 BIG glasses of water right away. You're going to be running to the bathroom all the time but it will get rid of that horrible razor blade feeling much faster. That's the first thing the nurse told me afterwards was to drink plenty. She said a lot of people don't want to drink because it hurts when the pee but that only makes it worse. I hope you start feeling better soon.
      Christine



      I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
      1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
      2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
      I have tried every oral medication as well as rescue instills and DMSO.

      I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

      Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
      Also proud mom to the best Bullmastiff on earth, Claus

      Comment


      • #4
        gmom's and Jen-

        Thanks so much for the support. I'm still having some issues this am but it is starting to get better.

        It just baffles me that the doc and the RN said "oh its no big deal, it won't hurt at all." I even asked if it was the size of a cath.....the RN told me no it's a bit smaller but it is harder. When she let me see the camera thing I almost jumped off the table and ran out of that office.

        The RN gave me her hand to squeeze because I started to cry.....u know I did not want to catch a case so I just held her hand but I will tell you what my head sure did hurt also......I was pulling my hair with the other hand. lol

        I NEVER want to do that again.......EVER!!!!!

        Thanks again for the support ladies.....it was much needed.

        Now I'm trying to figure out if I should apply for SS??? Any thoughts
        Live your life to YOUR best, and Love to YOUR best!!!



        DX in 03 with Shingles
        Removal of Left ovary due to Cyst in 2005,
        I have had cyst since I started my period as a child age 12
        Hysterecotmy December 06
        IC DX March 07 by PST
        2 "rescue" instills in March 07
        Cyco May 07 confirmed IC
        Uro study June 07
        1st Pain Block July 17,08
        Hydro/Cysto Nov 11, 2008
        12-11-08 was told I had alot of inflamation

        Meds: Allergic to 6 things
        Premarin......taking the gen cause I get it at Walmart for 4$$
        Presique for my drepression :woohoo:
        Abilify for my depression
        Adderall ...found out I'm ADD...makes sense now
        Kolopin for anxiety
        Noroco for my pain
        Valtrex for my shingles as needed

        Sorry if my spelling is off on the meds [/FONT]


        http://community.webshots.com/user/s...host=community

        Comment


        • #5
          Hey Stac,
          Well, I am glad it is over for you. Like I said, my first one was torture, it was so painful. The doc said it would be like having a catheter put in. Bull Sh**!!! A catheter is no where near as painful as the cystoscopy is. The cystoscope is way way harder than a cath is.
          Well, I learned the hard way also. But let me tell you, when I went to see the second urogyne, and had my second one, I told the doc right from the get go that I insisted I be sedated to go through it again, and he had no problems with sedating me. You have to be adament sometimes and let them know you mean business and that you are in charge, but do it in a diplomatic way of course
          I mean when I had all 8 of my upper endoscopies done, I was sedated. I see no reason why we should not be sedated for a cystoscopy as well. They dont even need to use general anesthesia, just that twilight stuff. That worked great for me, I did not feel a thing. I hope you are feeling better.
          Jen

          Comment


          • #6
            Thanks so much Jen-

            Well from now on I will let them know ahead of time. Great advise. Thanks
            Live your life to YOUR best, and Love to YOUR best!!!



            DX in 03 with Shingles
            Removal of Left ovary due to Cyst in 2005,
            I have had cyst since I started my period as a child age 12
            Hysterecotmy December 06
            IC DX March 07 by PST
            2 "rescue" instills in March 07
            Cyco May 07 confirmed IC
            Uro study June 07
            1st Pain Block July 17,08
            Hydro/Cysto Nov 11, 2008
            12-11-08 was told I had alot of inflamation

            Meds: Allergic to 6 things
            Premarin......taking the gen cause I get it at Walmart for 4$$
            Presique for my drepression :woohoo:
            Abilify for my depression
            Adderall ...found out I'm ADD...makes sense now
            Kolopin for anxiety
            Noroco for my pain
            Valtrex for my shingles as needed

            Sorry if my spelling is off on the meds [/FONT]


            http://community.webshots.com/user/s...host=community

            Comment

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