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  • Another One!!

    Hi Everyone,

    I am going in for my 6th hydrodistention very soon!! How many have any of you had??? Do you agree with them for pain relief? They help me with pain and each one helps more even though I still have to take pain meds.. The hydros help.
    thanks
    leeshel

  • #2
    I have had about 8 or 9 of them in the last 4 years or so. They do help for at least 5 to 6 months then I have to have them again. They help with the pain, but I have to take pain medicine, but not as much. Hope this answers your questions. There will be others to answer, I'm sure. good luck with your hydro - do you have it already scheduled? Let us know.

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    • #3
      I have 11 in the past 15 years. They definitely help me with both frequency and pain. I hope this one helps you.

      Comment


      • #4
        Thanks

        I see my dr in a few days to schedule it and I am looking forward to it. This has been the longest time I have went in between hydros and I am in so so much pain. I hope this one helps even more than the last!!!
        thanks for your answers
        leeshel

        Comment


        • #5
          I have averaged around two a year. I have been in a terrible way this week, and I went to the GP no infections, starting thinking and it has been 6 months since my last one, I am having to up my pain meds, etc. So I believe it is time to do another, the best thing they do for me is frequency, cuts it in half. Good luck

          Comment


          • #6
            In my 32 years with IC, I have had forty. The last one was in February 2006 and my symptoms are beginning to return now.

            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 had one 10 days ago and I feel better than I have in a year. The previous one kept me virtually pain free for 3 years. Before that it was one every six months to a year. I swear by them.
              I was born with one ureta not attached to it's kidney, I've been poked and prodded for so long. I never had "private" parts. I had constant infections and took low dose preventive antibiotics into my teens.

              DX with IC July 1993 after seeing 3 different Uro's and finally switching Primary care doctors and affiliated hospitals.


              I have 2 beautiful daughters, the oldest has been in heaven since she was 14 when she was hit by a car The youngest is 20 now. She has had one UTI. She went into complete panic that she would end up like me. Now she has some idea of what the pain is like. Poor kid has been forced to know where every bathroom in Disney World is.

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              • #8
                I must say it is so nice to hear positive stories about IC and relieving symptoms. I am having my first one done on Wednesday to make sure that I do in fact have IC which I'm pretty sure I do. I really hope that it helps with the pain and freq/urgency. The thing that made me feel a lot better though is I asked my uro if any of his patients have gotten worse after they had a hydro, and he couldn't remember that ever happening and acted like this was odd so it seems his patients haven't had this problem, hopefully that's a good sign.
                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


                • #9
                  Hope yours helps

                  Griffsmommy,
                  I sure hope your hydro helps you a whole lot! I will pray for you. As you have read thru the posts, you can see some people get help for 6 months up to 3 years!

                  I hope both of us get a three yr reprieve, don't you? Wouldn't we all. I have never gotten that long of one but there is a first time for everything.
                  thanks
                  leeshel

                  Comment


                  • #10
                    Oh thanks very much Leeshel, I really hope it helps me as well but as my hubby says I seem to get the worst of everything so as long as I get a proper diagnois and know how bad it is I will be happy even if it doesn't make me better. That would be nice though! Hope all goes well with yours
                    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


                    • #11
                      Oh My!!

                      Griffsmommy,
                      How did they find the endo growing thru your bladder? Did they do a laproscopic and go thru your belly button? My daughter has endo and IC so I am very interested in finding out how they could tell and what they did to help you.
                      thanks
                      leeshel

                      Comment


                      • #12
                        I think this is my fourth on the 15th They seem to help for a while then I have to have another one.
                        Interstitial Cystitis Stomach problems
                        diastolic dysfunction
                        vascular insufficency of left leg
                        pelvid floor disorder
                        hypothroidisim
                        asthma
                        bread cancer - 5yrsl. remission
                        swollowing difficulty
                        fatigue
                        lots of doctors
                        lots of med.














                        Keep your eyes on the Lord and he will direct your paths.

                        Comment


                        • #13
                          I have had 3 hydros. The last one was in November and it helped until a few weeks ago. Things are starting up again. I have found that the only relief I get is after having a hydro. The pain is never gone, but is much more tolerable after a hydrodistention.

                          Comment


                          • #14
                            Mine Helped

                            Hi all,
                            Mine seems to have helped!! I am so glad I got it done and over with and will def have another one probably by the end of the yr.
                            Glad you all get some relief also
                            thanks
                            leeshel

                            Comment


                            • #15
                              I also had my 4th Hydro in November and when I went to my dr. last week, I told her I wanted another soon. She just said for me to call and schedule. I find that I get about 4 months relief. I am kind of stretched right now financially, and I will have to pay 500.00 up front to cover my deductible, so I will probably wait another month or so.

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