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  • #16
    I've had three hydros over the years. The first one helped somewhat but gradually faded out after about 2-3 months. The experience itself was quite painful. I remember waking up and peeing BLOOD, a toilet full of it. My bladder was extremely "tight" according to my uro, and I had a lot of bleeding from the bladder wall. The next two didn't do as well. The final one, I had no improvement from. All three gave me lots of pain while "recovering". One uro told me that it was common to get less and less results from them the longer you do them. I don't know if that's true across the board but it seemed to be for me. Like I said, the first one was the only one I felt some relief from. BUT, let me say this....even though the first one improved me, I was still in terrible pain by the time I did have to urinate. I could go longer, but it was almost like I hurt more because the bladder was able to fill more, thus a more intense kind of pain when it reached the filling point. If that makes sense! So, in an odd way, I still felt lousy even though I had some decreased frequency. Anyway, I never had another one after the third one because it just didn't seem worth it to go under anesthesia, all the pain, the hospital experience, the whole thing. I'm not saying people shouldn't try it - I think it's one of the better first line treatments and of course diagnosis tools. But I don't know if you should go on and on with it if there's decreasing results.

    Comment


    • #17
      CST,
      Thats a good point, If its not doing anymore good why do it..
      Hugs
      Ronda

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


      Link to Patient Handbook:
      http://www.ic-network.com/handbook/

      Diet Reference Sheet:
      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Comment


      • #18
        ::sigh::

        I've had hydro done twice since I've been diagnosed in November of 2006, and let me tell you it does nothing for me. It works for a week exactly, then the pain comes and hits me like a ton of bricks.

        Comment


        • #19
          Negative - it made me very much worse & seems to have caused permanent damage. I didn't have bladder pain before,but it's been awful for the two years since.

          Comment


          • #20
            I just had one last week and once again it is helping.

            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


            • #21
              I had a very negative experience right after the hydro and personnally would never have another one. My doctor agrees that I should not have another one. I will not go into detail because I do not want to scare anyone that needs to have it.

              Having said that I think the hydro is necessary to get a diagnosis but I do not feel it should be repeated. I know Donna has been helped by that but having had such a bad experience I do not agree with this form of therapy.

              Ginny

              Comment


              • #22
                Glad to here you are doing well Donna.....
                Hugs
                Ronda

                ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                Link to Patient Handbook:
                http://www.ic-network.com/handbook/

                Diet Reference Sheet:
                http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                Meds I have Tried:
                Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                Lexapro< Bad reaction to this med!
                Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                Dx With IC in Nov 2006 with Hydro/Cysto
                Hydro/Cysto Caused Bladder to Rupture.

                Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                Comment


                • #23
                  Thank you, Ronda. I don't know how I could have managed during my 32 years with IC without hydrodistentions. I feel very fortunate that it works well for me.

                  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


                  • #24
                    Originally posted by GriffsMommy View Post
                    I would say my hydro was a positive experience. It didn't make me feel worse or better from the actual hydro itself. I think was a positive experience because I finally knew for sure that it was IC. I was really worried it was going to make me worse and really hoping it was going to make me better but it didn't actually change my pain or symptoms at all.
                    I totally agree with you. I was in lots of pain afterwards for 3-4 weeks. But after that I was the same as I was before having it done.
                    Endometriosis,Fibromyalgia, Severe Adhesions-
                    3 c-sections, Particial Hysterecotmy,Laporoscopy for cysts, Appendectomy, R-ovary removed, IBS, Acid Reflux, Asthma, and the worst of all IC


                    Patty

                    Comment


                    • #25
                      Yup, it took me awhile to recover but after that my symptoms were the same as before. Then my uro put me on Elavil and that helped some with the pain. I'm having more daily pain now again though so I think it's time to up the dose or something.
                      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


                      • #26
                        Had one a few years ago and I was totally pain-free for over 6 months. It was worth it, even though I was stuck in bed for a few weeks afterward. It was the worst pain I'd ever felt, but sibsided in a few weeks and I was so happy. Would do it again but I'm in remission at the moment so no need.
                        Allison, 25, living with IC since 2002. Add me on Facebook! (search Allison Jacobs)

                        Conditions: (known)
                        IC, Chronic Pelvic Pain, Neuropathy, Adenomyosis (hysterectomy to "cure" this), Vulvadynia

                        Medications:
                        Elmiron--200 mg twice daily
                        Cymbalta--90 mg once daily
                        Various pain meds, rotating

                        Treatments:
                        Spinal Nerve Stimulator implanted 5/10, mostly unsuccessful
                        Hysterectomy 9/09
                        D&C and hysteroscopy 8/08, somewhat helpful
                        Mirena IUD began 12/07, unsuccessful
                        Lupron Depot 6/07-8/07, unsuccessful
                        Hydrodistention 2004, 2007
                        Physical therapy 2003-2006

                        "Tomorrow is the most important thing in life. Comes into us at midnight very clean. It's perfect when it arrives and it puts itself in our hands. It hopes we've learned something from yesterday."
                        John Wayne

                        Comment


                        • #27
                          I cannot really answer this question either way. Like Kim, mine was positive in that it gave me a diagnosis, and positive in that the doctor that diagnosed me and the hospital staff were incredibly nice to me afterwards. I also healed up fairly quickly with no complications. However, from a treatment standpoint, I did not end up getting relief. So, it was both!
                          ****
                          Jen

                          *Diagnosed with severe IC in 2004
                          *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                          *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                          *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                          **I am not a medical authority nor do I offer definitive medical advice. 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.

                          Comment


                          • #28
                            AJ So happy to hear you are in remission. I pray for those days. It's good to know it could happen.
                            Endometriosis,Fibromyalgia, Severe Adhesions-
                            3 c-sections, Particial Hysterecotmy,Laporoscopy for cysts, Appendectomy, R-ovary removed, IBS, Acid Reflux, Asthma, and the worst of all IC


                            Patty

                            Comment


                            • #29
                              I wish I would have read here first. I had one 4 days ago and the burning in the bladder and urethra is crazy. They say I need to walk, wow that is so hard when every step moves the bladder and urethra. Well I guess I cannot contibute to this poll quite yet, looks like I have to wait 2 weeks and hope I get back to where I started. But so far its been very negative and has made things very much worse.

                              Comment


                              • #30
                                The poll results so far are running about what I have read --- that about 50% of IC patients benefit.

                                Side note to mtn123: If you don't feel some relief from the burning by tomorrow morning, I think it would be good to be checked to be sure you don't have an infection.

                                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

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