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  • #1

    question about hydrodilation

    About 2 weeks ago I had cystography with hydrodistension for diagnosis and in hopes that the hydro would help, also. Does anyone know, if it was going to help, how long would it take? I know it wouldn't have helped right away, I was told it would get worse first, which for a day or 2, it definitely was, with more pain and burning. But I haven't gotten any better either, peeing as much as ever. For anyone who has had hydro work for them, how long did it take?

    I see my Uro on Thursday. I'm feeling not so optimistic today. My symptoms have been bad today, esp.
    sphinx
    sphinx
    ICN Member
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    Last edited by sphinx; 06-03-2007, 09:18 AM.
    My dx: RA, Fibro, Interstitial Cystitis, Bipolar Type 2, Pelvic Floor Dysfunction, IBS
    My meds: MTX, Leukovorin, Humira, Prednisone for RA flares, Celebrex, Orphenedrine, Tramadol as needed, Wellbutrin, Lamictal, Lyrica, Trazodone, Nexium, Singulair, Atarax, Elmiron, Provigil, and Macrobid/Trimethoprim (rotate monthly). I also take a multivitamin, Magnesium, Calcium supplements, fiber supplements, probiotics, and vitamin D.
    Current treatments: bladder instillations

    Come play with me on Facebook!
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  • #2
    I think it can take two or three months depending on the person. I had mine in March and I am probably 80% better unless I have PMS. The recovery and treatment effect can be so slow that you don't even know it is happening. I hope you feel better soon.
    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.

    Comment

    • #3
      I usually feel better within a few days, but there are reports that it has taken up to weeks or even months to improve.

      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?
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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]

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      • #4
        my mom had great relief, but I don't recall the time frame. When I had my first one for a dx, I had relief a couple weeks later. My second one tho was a wrong decision, The only thig worth while in getting it done was for the pictures.
        I hope you feel better soon
        'The will of God will never take you where the Grace of God will not protect you.'

        Comment

        • #5
          Some people get symptom relief from the hydro, but not all. Hopefully you will be one of them. I didn't get any improvement from it, but it didn't hurt me either & getting a diagnosis was worth it.

          Hang in there, hope you are feeling better soon...
          Kadi

          -------------------------------------------------------------
          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.
          ------------------------------------------------------


          New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
          Source - Pinterest
          "

          Current treatments:
          -IC diet
          -Elavil 50mg at night
          -Continuous use birth control pills (4-5 periods/year)
          -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
          -Pyridium if needed,
          -Pain medicine at bedtime daily, as needed during the day several times per week
          -Antibiotic when doing an instillation to prevent UTI
          -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
          -Dye Free Benadryl 50 mg at bedtime
          -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
          -Managing stress= VERY important!
          -Fur therapy: Hugging the cat!

          Comment

          • #6
            Originally posted by kadi View Post
            Some people get symptom relief from the hydro, but not all. Hopefully you will be one of them. I didn't get any improvement from it, but it didn't hurt me either & getting a diagnosis was worth it.

            Hang in there, hope you are feeling better soon...
            Well, it didn't hurt me except a couple days of burning, which is not usually one of my symptoms, and Pyridium took care of that. I did have an increase of pain too, but that went away fater 2 days as well. But the maddening frequency remains, and in the past 2-3 days seems worse, but it's hard to tell for sure...I should probably keep track again before my visit, eh?

            I guess I just figured if I was going to get relief, it would be seen my now (2 weeks as of this coming Monday). I want it to work, because meds may be a problem for me, since I am already on about a gazillion meds for other problems.

            **sigh**
            My dx: RA, Fibro, Interstitial Cystitis, Bipolar Type 2, Pelvic Floor Dysfunction, IBS
            My meds: MTX, Leukovorin, Humira, Prednisone for RA flares, Celebrex, Orphenedrine, Tramadol as needed, Wellbutrin, Lamictal, Lyrica, Trazodone, Nexium, Singulair, Atarax, Elmiron, Provigil, and Macrobid/Trimethoprim (rotate monthly). I also take a multivitamin, Magnesium, Calcium supplements, fiber supplements, probiotics, and vitamin D.
            Current treatments: bladder instillations

            Come play with me on Facebook!

            Comment

            • #7
              Hi Sphinx,
              Are you also keeping a food diary? Since foods (even innocent looking ones can set us off), might be worth tracking. Be sure to read labels, I was really shocked to discover that most commercial breads contain preservatives that get me every time...
              If you're not on the IC diet, you might consider it. I think I read that it helps 86% of us, better statistics than any medicine available.. Here's a link to it.

              http://www.ic-network.com/handbook/diet.html

              Hang in there--
              Kadi

              -------------------------------------------------------------
              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.
              ------------------------------------------------------


              New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
              Source - Pinterest
              "

              Current treatments:
              -IC diet
              -Elavil 50mg at night
              -Continuous use birth control pills (4-5 periods/year)
              -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
              -Pyridium if needed,
              -Pain medicine at bedtime daily, as needed during the day several times per week
              -Antibiotic when doing an instillation to prevent UTI
              -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
              -Dye Free Benadryl 50 mg at bedtime
              -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
              -Managing stress= VERY important!
              -Fur therapy: Hugging the cat!

              Comment

              • #8
                When my hydros were most effective it took me about 3 weeks to see an improvement. Everyone is so different with this. Unfortunately now, the hydros aren't as therapeutic but there are people on the boards who have continued to have great success with them over many, many years. I hope you feel better soon.

                Hugs,
                Barb
                (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

                [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
                :angel: IC Angel Volunteer Coordinator :angel:
                :) Contact me via PM or e-mail if you would like to help
                I have learned all about life in 3 words: It goes on! :D--Robert Frost
                PCOS 7/85
                RSD 7/94 :headbang:
                Endometriosis 9/98 :toilet:
                Antiphospholipid antibody syndrome 9/99
                Kidney stones--too many to count
                Factor V Leiden mutation 10/02
                IC 6/03 :evilsmile
                Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
                "Spirit is an invisible force made visible in all of life"--Maya Angelou
                "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]

                Comment

                • #9
                  Originally posted by kadi View Post
                  Hi Sphinx,
                  Are you also keeping a food diary? Since foods (even innocent looking ones can set us off), might be worth tracking. Be sure to read labels, I was really shocked to discover that most commercial breads contain preservatives that get me every time...
                  If you're not on the IC diet, you might consider it. I think I read that it helps 86% of us, better statistics than any medicine available.. Here's a link to it.

                  http://www.ic-network.com/handbook/diet.html

                  Hang in there--
                  I've never tried an actual food diary (except when dieting, lol), but will try it the next few days at least. I am trying to cut out pop-I drink diet caffeine free pepsi, and am down to 1-2 a day. I already gave up caffeine, which was hard.....strangely it didn't make a huge difference except in my sleep, lol.

                  I'll give some of this stuff a shot. I printed out the food list!
                  My dx: RA, Fibro, Interstitial Cystitis, Bipolar Type 2, Pelvic Floor Dysfunction, IBS
                  My meds: MTX, Leukovorin, Humira, Prednisone for RA flares, Celebrex, Orphenedrine, Tramadol as needed, Wellbutrin, Lamictal, Lyrica, Trazodone, Nexium, Singulair, Atarax, Elmiron, Provigil, and Macrobid/Trimethoprim (rotate monthly). I also take a multivitamin, Magnesium, Calcium supplements, fiber supplements, probiotics, and vitamin D.
                  Current treatments: bladder instillations

                  Come play with me on Facebook!

                  Comment

                  • #10
                    Originally posted by Babs RN View Post
                    When my hydros were most effective it took me about 3 weeks to see an improvement. Everyone is so different with this. Unfortunately now, the hydros aren't as therapeutic but there are people on the boards who have continued to have great success with them over many, many years. I hope you feel better soon.

                    Hugs,
                    Barb
                    During the 3 weeks......did you see a gradual improvement, or was it "same, same, same...then better"? I know that sounds silly...but I'm grasping!
                    My dx: RA, Fibro, Interstitial Cystitis, Bipolar Type 2, Pelvic Floor Dysfunction, IBS
                    My meds: MTX, Leukovorin, Humira, Prednisone for RA flares, Celebrex, Orphenedrine, Tramadol as needed, Wellbutrin, Lamictal, Lyrica, Trazodone, Nexium, Singulair, Atarax, Elmiron, Provigil, and Macrobid/Trimethoprim (rotate monthly). I also take a multivitamin, Magnesium, Calcium supplements, fiber supplements, probiotics, and vitamin D.
                    Current treatments: bladder instillations

                    Come play with me on Facebook!

                    Comment

                    • #11
                      For me it was same, same, same...then better. I'm sorry you are feeling so rough. Please PM me if you need to vent, k?

                      Hugs,
                      Barb
                      (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

                      [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
                      :angel: IC Angel Volunteer Coordinator :angel:
                      :) Contact me via PM or e-mail if you would like to help
                      I have learned all about life in 3 words: It goes on! :D--Robert Frost
                      PCOS 7/85
                      RSD 7/94 :headbang:
                      Endometriosis 9/98 :toilet:
                      Antiphospholipid antibody syndrome 9/99
                      Kidney stones--too many to count
                      Factor V Leiden mutation 10/02
                      IC 6/03 :evilsmile
                      Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
                      "Spirit is an invisible force made visible in all of life"--Maya Angelou
                      "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]

                      Comment

                      • #12
                        for me, I usually start to feel better within a few days. I think the one I had back in September which wasn't the one I just had a month or so ago, took me a little longer to recover from as I had a lot of problems. But once everything settled down I was ok.

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