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HELP! NERVOUS! Need Hydrodistention Info Please

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  • #1

    HELP! NERVOUS! Need Hydrodistention Info Please

    I am less than two weeks from my first cystoscopy with hydrodistention, and I would really like to hear some experience regarding these aspect of the procedure. I like details... please be as specific as possible.

    -Were you given anything prior to the procedure to help with nervousness? What was it? Was it effective?
    -What level of pain did you experience when you awoke from the procedure? What were you given to kill the post-op pain? Was it effective?
    -Were you provided any pain relieving medication once you were released from the hospital? What was it, and was it effective?
    -What was your recovery like? How long did you feel post-op pain? Did any other issues arise? Blood in urine for example?
    -Did the procedure alleviate your IC pain? If so how long? If not what treatment method did you explore next?
    -If your symptoms were alleviated how long did the relief last? Do you repeat the procedure or try other treatments?

    Any other info is welcome and appreciated. If this post is under the wrong catergory please let me know, and I will repost in the correct area. Thanks!

    Gratefully,
    LowCard
    Last edited by LowCard; 11-17-2016, 12:11 PM.
    Tags: cystoscopy, hydrodistention, medication, nervous, pain
  • #2
    Re: HELP! NERVOUS! Need Hydrodistention Info Please

    Originally posted by LowCard View Post
    I am less than two weeks from my first cystoscopy with hydrodistention, and I would really like to hear some experience regarding these aspect of the procedure. I like details... please be as specific as possible.

    -Were you given anything prior to the procedure to help with nervousness? What was it? Was it effective?
    -What level of pain did you experience when you awoke from the procedure? What were you given to kill the post-op pain? Was it effective?
    -Were you provided any pain relieving medication once you were released from the hospital? What was it, and was it effective?
    -What was your recovery like? How long did you feel post-op pain? Did any other issues arise? Blood in urine for example?
    -Did the procedure alleviate your IC pain? If so how long? If not what treatment method did you explore next?
    -If your symptoms were alleviated how long did the relief last? Do you repeat the procedure or try other treatments?

    Any other info is welcome and appreciated. If this post is under the wrong catergory please let me know, and I will repost in the correct area. Thanks!

    Gratefully,
    LowCard
    Hi Lowcard, I will answer your questions and hope they help. I had my hydro back in 1998 so I hope I can remember it all.

    They didn't give me anything prior to the procedures but they have done that for me when I went to have my urethra stretched. I just panicked for no reason really so they gave me something in the IV to calm me down. I have no clue what it was but it worked.
    The pain was like level 9 but my pain level is 8-10 anyways. They gave me pain medicine and I think it was Vicodin and I had Vicodin to take at home. They also gave me peridium (spelled wrong). That also helped with the pain and made it so my bladder didn't spasm. Both Vicodin and peridium helped.
    I don't know if you will have blood from having the hydro done but when I had mine done I also had a biopsy so I did have blood and I woke up with a catheter in. They wanted me to drink as much water as I could to help flush it out before they took the catheter out.
    The post-op pain lasted about a week. It really wasn't that bad. Most of what I felt was soreness. Sort of like getting your tooth pulled but having it pulled out down there. I just took it easy and drank lots of water.
    The procedure didn't alleviate my IC pain at all. After the hydro I tried the Elmiron but I could not take the side effects so from there I had the cloropactin done 3 different times which didn't help so from there I tried the Heparin/lidocaine installation once a week and that was when I hit the jackpot! I have been doing that since 2000 or 2001.
    It's really different for everyone which I think makes having IC so very very hard. You can't just say "This worked for everyone else or for 90% so here you go. Try this" It's like a gamble. Keep trying until you find that one "magical" treatment that helps. I almost gave up on the Heparin too. My Uro told me it could take up to 8 months before it would start to help and the week before the last week to mark the 8th month I was getting ready to tell him I quit. Thankfully, I stuck it out.
    Hope this helps you and good luck!

    Comment

    • #3
      Re: HELP! NERVOUS! Need Hydrodistention Info Please

      Hi there, I've had this done twice with minimal hydro. I'd prefer to tell you about my second one as my first one was pure hell and that is NOT the norm for this procedure.
      I was given a Valium prior to going in and was awake throughout the procedure. They put an anaesthetic into your urethra and then I had a flexible scope inserted. And really wasn't as bad as I had imagined. They filled me up with saline solution and checked everything out and loaded me up to 1200 I believe. It was good to see everything for myself and my doctor was very good. It hurt a bit going through and back out of the bladder neck but that was moreso my PFD and tight muscles not allowing the scope through. I got a clear picture of all the things I felt, and it was "nice" to see that what I was explaining could be visualised in the exact spots I said. I had minimal pain after maybe about three days. Yes I had blood but I always do. I felt the best I had in months after that for about a month.
      Now the first one was done when I was newly searching for answers, with a rigid scope and I was asleep. bare in mind that my pain level was already at an 11 and I was on no medication. I had nerve pain. All of that was exacerbated by the initial cysto. Most people on here do not have that experience. They are generally very happy with their outcomes.
      UTI 3/2015
      IC ,PFD
      prescribed meds: Endep 60mg, Elmiron 400mg, BC. Enablex 7.5mg.

      Supplements: Chitomur peptide, colostrum, Echinacea, liver detox swisse, calcium citrate, glucosamine, Psyllium Husk.

      Daily diet: Breakkie- oats with chia seeds and no fat milk. Post workout-turkey breast with mixed veggies. Lunch-raw green soup with rye roll and handful of peanuts/almonds. Dinner- changes but meat and veg. Dessert-banana and sugar free custard (homemade) or banana and apple bake with almonds cinnamon and honey with a dollop of coconut cream.


      Tried: tramadol, cystoprotek, multi right, diazepam, vesicare, Ditropan, mirabegron, Flomax, lyrica, progesterone.

      Comment

      • #4
        Re: HELP! NERVOUS! Need Hydrodistention Info Please

        Oh and it was a day procedure the second one.
        The first I was in for 4 days but like I said that was unusual.
        UTI 3/2015
        IC ,PFD
        prescribed meds: Endep 60mg, Elmiron 400mg, BC. Enablex 7.5mg.

        Supplements: Chitomur peptide, colostrum, Echinacea, liver detox swisse, calcium citrate, glucosamine, Psyllium Husk.

        Daily diet: Breakkie- oats with chia seeds and no fat milk. Post workout-turkey breast with mixed veggies. Lunch-raw green soup with rye roll and handful of peanuts/almonds. Dinner- changes but meat and veg. Dessert-banana and sugar free custard (homemade) or banana and apple bake with almonds cinnamon and honey with a dollop of coconut cream.


        Tried: tramadol, cystoprotek, multi right, diazepam, vesicare, Ditropan, mirabegron, Flomax, lyrica, progesterone.

        Comment

        • #5
          Re: HELP! NERVOUS! Need Hydrodistention Info Please

          Water flow... what side effects did you experience with Elmiron? I've been on it for over a month and have not get any relief or side effects. They said it may take months of Emiron to notice any differences in my bladder pain. Do the side effects take that long to occur also? Thanks for your help!

          Comment

          • #6
            Re: HELP! NERVOUS! Need Hydrodistention Info Please

            I got unwanted side effects in a week. Mostly stomach upset, and D.

            Everyone is so different though.
            My are with you all. May you all find a way to peace and joy in your lives.

            Comment

            • #7
              Re: HELP! NERVOUS! Need Hydrodistention Info Please

              Response to lowCard ? About Elmiron

              Originally posted by Mothergoose View Post
              I got unwanted side effects in a week. Mostly stomach upset, and D.

              Everyone is so different though.
              My are with you all. May you all find a way to peace and joy in your lives.

              Comment

              • #8
                Re: HELP! NERVOUS! Need Hydrodistention Info Please

                I have had over forty hydrodistentions in my 41 years with IC. I'll try to give you some information that might help with your anxiety.

                When I have a hydro, I go to a surgery center at the urologist offices fairly early in the morning. After arrival, I am weighed in and given a hospital gown to put on --- they provide warm blankets. I'm diabetic so they do a finger poke, then take blood pressure, temperature, and apply a heart monitor. I am given valium during this process so I'm very relaxed when I go to the surgery room. The last I usually remember about that room is being scooted onto the surgery table.

                The next I know is in the recovery area, where they keep me until I am fully awake; they give me a snack there. I'm usually back home for lunch.

                I have low pressure hydros and very little pain afterwards.

                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.

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                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

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