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  • #1

    Cystoscopy - Hydrodistention again

    well... I went to the specialist yesterday. I have been flaring off and on pretty bad since April. Tried some things - works for awhile, then bad flare and I am following the diet.

    I sort of expected my uro to say "here's another medication, try that"... however, he suggested that we do another cystoscopy/hydrodistension. I had one done in October - I found it to be very helpful until about a month and a half ago. He said we could wait for three months if I wanted. I wanted to wait until it got worse and he concluded that might not be a good idea... why suffer pain you do not have to suffer?

    What do you think? I am scheduled for July right now.

    Any advice... this is my third cystoscopy/hydrodistension in 18 months.

    Thanks
    Wizbe

    Current Meds:
    1 Elmiron 100mg 3x a day
    1 Cimetidine 300mg 2x a day
    4 Gabapentin 300mg 3x a day (3600mg)
    1 - 2 Atarax 25mg at bedtime
    1 baclofen 10mg 3x a day as needed
    200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
    2 belladonna and opium suppositories as needed for pain daily.
    Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

    I have tried but failed -
    lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
    [/I]
    Tags: None
  • #2
    If it helped before, it could help again. I just had one done on May 16 and it seems to be working well for me again.


    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
      I had one done April 19th and felt good until the first part of this month. Now I am having some burning and discomfort again. I saw my family doc this past week for my yearly checkup and mentioned this to him. He said I should either do DMSO or another hydro. I really can't afford to do either right now since I am working and can't take a day off. I also don't can't afford to spend thousands of dollars for a month of relief. Is there anything else I can try?

      Comment

      • #4
        babygirl, are you following an IC diet? On any medications for your IC? There are many other options you can try.

        Sending encouraging hugs,
        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

        • #5
          I quit drinking coffee, tea other than chamomile, alcohol, caffinated drinks, fruit juices, watch the citric acid and no chocolate. Food doesn't seem to bother me, I just flare on and off for some reason. As far as meds go, I am on oxybutinin, hydroxyzine, amitriptiline, aloe vera, cystaprotek, cranberry, and just started colostrum a little over a week ago. I am thinking of going to see a doctor where I live that specializes in female problems and see if he can help me. He does things with a holistic approach. Otherwise, I will see what my family doc has to say.

          Comment

          • #6
            What kind of cranberry are you taking --- cranberries can be a huge problem for an IC bladder if the acid hasn't been removed.

            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

            • #7
              I do Nature's Bounty. I've been taking it for years. None of my docs have said anything about it in a negative way.

              Comment

              • #8
                I have hydros done about every 6-8 months. They usually work for me. Last one that I had was back in March.

                Comment

                • #9
                  I just had a cystoscopy with hydrodistension last week...I can't believe how much my pain has eased up since then (I still hurt, but the pain is much better)...I say try it!

                  Also...I use a TENS unit every night...it helps a lot too!

                  Comment

                  • #10
                    Babygirl, you might want to stop the cranberry for a week or two to see if that helps.

                    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

                    • #11
                      I think I might give that a try. Today I'm feeling quite a bit better. I don't know if it's the cortizone shot I got in my foot for an injury or if I've turned a corner. So, I guess I'll see if I continue to feel better.

                      Comment

                      • #12
                        pain no relief or minimal at best

                        after reading wizbe's post and her list of meds. Well, it just keeps on and on twith the similiar stories of continued pain even with significant pain meds ordered. However, I realize some are probably in a worse state or condition in their bladder and involved areas.
                        I'm on hydrocodone from my other DX's but the script isn't enough to get me thru another month. I'm going to call my Uro. again. Due to my daily pain and for about a month now I'm also having some kind of rectal spasms along with the bladder and perinial pain.
                        My heart breaks to know there are so many of you with I.C. and still in mod. to severe pain. What's up with the Drs. I know they need to be treating the pain better.
                        The last thing I was offered was flomax ( for men ) anyone ever tried this one and had relief of pain and frequency. Please let me know . I won't have another cysto-with hydrodilation soon, because I only had 6 weeks of relief. And I bled about 200cc every 90 min. the next 20 hours following the procedure. I was so weak I should have gone to the E.R./
                        Hugs for everyone .
                        Lizzie_71

                        Comment

                        • #13
                          Had the procedure

                          Hello Everyone:-)

                          Just to update - I had my hydrodistension done on Tuesday of this week. Tuesday evening I was definitely in a lot of pain, Wednesday I flew home and had people come get me to drive me home the 5.5 hour drive. I rested Thursday and today. The frequency of course have increased but I expected that for the first three weeks at least - every twenty - thirty minutes, not so bad today. I hope it will gradually get better. I am still walking slowly - but I was in a huge flare before I went and felt the same way then.

                          After surgery I was told that they did the hydro, plus urethal dilation, and they burned a couple of ulcers off my bladder. He said it will take about six weeks to see if this works again. I am positive.

                          I have to tell you though - it was stupid what they were giving me after surgery. After you get out of recovery and move to the discharge room - they give you liquid. Well the choices were - (1) water and (2) apple juice. So I asked for water and tasted the water and could taste the chlorine so I refused to drink it because it does really bad things to me and then they gave me apple juice. Not thinking, I drank the whole bottle of apple juice - I paid for it later. The next morning I got up after hardly sleeping all night and thought suddenly - drink loads of water - so I drank water water water and that helped tons.

                          I took notes this time after the surgery - so that I can remember the next time (if there is a next time) what to expect and what not to do. It's hard to remember these things although it's my third time in 18 months LOL.

                          Thanks for all of your support,
                          Wizbe

                          Current Meds:
                          1 Elmiron 100mg 3x a day
                          1 Cimetidine 300mg 2x a day
                          4 Gabapentin 300mg 3x a day (3600mg)
                          1 - 2 Atarax 25mg at bedtime
                          1 baclofen 10mg 3x a day as needed
                          200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
                          2 belladonna and opium suppositories as needed for pain daily.
                          Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

                          I have tried but failed -
                          lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
                          [/I]

                          Comment

                          • #14
                            Glad it wasn't too bad for you,

                            heal fast MG
                            My are with you all. May you all find a way to peace and joy in your lives.

                            Comment

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