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  • #46
    Great Poll!!!

    I was just getting ready to ask the same thing when I seen this poll. I have not had the hydro since my only real symptom is urgency. I did not want to do anything that would bring on more problems (especially the horrible pain that others have to deal with). I've been in PT for PFD and I swear it is helping. It has made significant improvements in my symptoms. The PT says that we are in a way naturally stretching my bladder. I'm starting to see the light at the end of the tunnel and feel more like myself again. I hope I'm not jinxing myself now.
    Take Care, Brandy

    Symptoms: Extreme/Heightened False Urges to Urinate 24/7, Pressure, & Burning

    Endoscopic Urethral Reflux Surgery at age 3 -to correct urine from going back up into my kidneys causing numerous kidney infections-also numerous catherizations as a child

    Pretty Normal Life Until....

    April 8 2007 -began to have 24/7 urge to urinate after taking 2 phentermine & sublingual B12 supplements-stopped those immediately-symptoms persisted (Six months before this I had a UTI with terrible back pain)

    Ultrasound ordered-Large Ovarian Cyst pressing on my bladder

    Laparascopy end of May to remove cyst-Fortunately Benign Serous Cystadenoma

    Also discovered Endometriosis


    After surgery symptoms continued -ended up at the ER-Numerous meds, antibiotics, etc.-no relief

    IC dx via symptoms

    PT MY MIRACLE-Family dr ordered PT for PFD-90% improvement after few months:woohoo:

    Meds:
    Physical Therapy (Theiles massage)

    Valium 5mg-I was found to have a high tone pelvic floor and this helps to relax my muscles

    Birth Control Pills(Lo Estrin 24 FE), 50 mg Low-dose antibiotic(Macrodantin)

    Hot Baths & Rest

    Comment


    • #47
      Unfortunately, not so good

      Hi everyone,

      I have had two of these, one for the diagnosis of IC, and another recently. The first one was about 4 years ago, and it was done under local anesthesia. I got a firm diagnosis of ulcerative IC with that procedure. I felt better afterwards for about three months.

      My second one was under general anesthesia and done in conjunction with zapping the ulcers. When they did it my bladder bled profusely and the doctor later told me that my bladder was a "bloody mess." I bled daily for weeks afterwards. I had relief of pain, though, for about a month and a half. Then the symptoms came back, even worse than before. It seems that my condition is progressing rather than getting better.

      Hydrodistention seems to provide temporary relief. I probably won't be doing it again since my bladder is now worse.

      Best wishes,

      Victoria

      Comment


      • #48
        scared

        I am scheduled to have this done in a few days, but I am going to cancel. I have read so many negative things, and not just on this site. My main symptom is frequency, and while my bladder at times hurts from being irritated I'm not in horrible pain. I am worried it will make things worse than they already are. It seems the benefits don't come anywhere close to outweighing the risks for most. I appreciate the site full of info

        Comment


        • #49
          Salsa,
          Where I know you might be scared the most important thing is if you trust your Dr..
          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


          • #50
            I've had both a positive and negative experience w/ hydrodistentions. I had the first one in about '02 and I felt a lot better for the next couple months...and then I had another one in '05 and felt worse for a while after...I wouldn't cancel your procedure based on everyone else. You could feel a great deal better after having one. Talk w/ your doc, and tell him your concerns and then make your decision from there. Good luck with whatever you decide!
            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
            Proud wife since July 01, 2007 to Stephen & mommy to Fancy (our Yorkie)!
            Diagnosed w/ IC in 2001 and IBS in 1999
            Currently being treated with:
            -Elmiron 100mg 2x/day
            -DMSO instillations every 10 weeks

            Comment


            • #51
              Thanks so much for the replies. I will talk to my doctor and go from there. Does the procedure help with frequency? I go about 60+ times a day, but I am only in tears from being frustrated and sick and tired of going to the bathroom! I have bladder irritation for sure, but it's not what I would call agonizing pain. I just don't see the benefits outweighing the risks....but I am willing to talk to my doctor

              ETA: I'm obviously new to all this and unsure!
              Last edited by Salsa; 09-26-2007, 09:13 AM.

              Comment


              • #52
                Originally posted by Salsa View Post
                Thanks so much for the replies. I will talk to my doctor and go from there. Does the procedure help with frequency? I go about 60+ times a day, but I am only in tears from being frustrated and sick and tired of going to the bathroom! I have bladder irritation for sure, but it's not what I would call agonizing pain. I just don't see the benefits outweighing the risks....but I am willing to talk to my doctor

                ETA: I'm obviously new to all this and unsure!

                While it did not help me initially, I think that it did over the long term. The benefit hopefully coming from enlarging your bladder capacity somewhat. I had a definite increase in pain, which I wasn't thrilled about, however, my frequency went down considerably. So it's definitely a hard decision. Yes, trust your doctor, but always do your research and if concerned, get a second opinion.
                http://www.TheCraftyEwe.etsy.com

                Comment


                • #53
                  I went to see my doctor again today and I'm scheduled next week. I have a great doctor and while I'm still nervous I know I'm in good hands. I hope the pain isn't excruciating and hope I have some good results like some of you had!

                  Comment


                  • #54
                    It did not help me very much and it caused me some pain but it only lasted a day or so. I was glad to get the diagnosis though.

                    The best thing for me has been diet change and elmiron. Hope this helps someone out there.
                    Diagnosed October 2006
                    Medications
                    Percocet
                    Hydroxine
                    Elmiron
                    Monthly installations

                    Comment


                    • #55
                      I really wish that I would not have had the hydro

                      Hi,
                      I have posted before and read much here. I always wonder when I read about how the hydro's have helped Donna and others if it would have helped me if I would have had anesthesia, because I was so tense from the angony to the point of moaning and shaking.but also I had the dilation done with nothing either that day, and maybe that is why I have urgency now, wow, when I have to go I have to go! and then sometimes I can not so It makes things worse, really too much pain. but I think I always had bladder spazms.
                      I just know that for me the hydro and dilation made my already fallen bladder even worse and I always have to get up now in the middle of the night.
                      How I wish it would have done good for everything I went through! Gees! anyways it did nothing for me except make things different and worse.Except for the diagnosis, which was good so at least now I know what on earth was going on for so with my bladder.

                      Everyone should read about every proceedure and doctors should not mention a proceedure and do it the same day. We are unprepared that way and can only rely on the information they tell us or don't tell us.

                      Comment


                      • #56
                        Salsa,
                        Good luck and let us know how it goes..
                        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


                        • #57
                          Ronda if this is a repeat please forgive me, but having the test done was a good thing for me, now I know I am not just going crazy. It's horrible to know that you know something is seriously wrong but yet no one can tell you what it is, and also make excuses as if nothing is really seriously wrong. I think now you can do other test other then this one. I think there is so much good and so much bad in this prodecure. This is something that might be a good thing for one and not a good thing for another person. It makes it hard because each one of us our different, so it becomes complicated.

                          Sending hugs, Trishann

                          Comment


                          • #58
                            I would not be afraid of it

                            Greetings,

                            My IC is pretty severe and I have lots of ulcerations, and I've had three hydrodistentions. One was an in-office procedure with no anesthesia, that was excruciatingly painful and totally useless, not even for diagnostic purposes. I am not sure why they did it at all. I had one under local anesthesia which allowed for my initial diagnosis, and the other under general anesthesia for lasering of the ulcers. Both of the procedures I had under anesthesia gave me relief from pain and frequency for several months. So I would not be afraid of having a hydrodistention. You may get more relief than I did, I know that a lot of people do. But I think there's a big difference between the office procedure and a hospital procedure, at least there was for me. It wasn't a solution for me but if you have a relatively mild case of IC it might be a good strategy. My doctor indicated that it might break the pain cycle, and it did do that temporarily.

                            Comment


                            • #59
                              My opinion of the cysto/hydro isn't really fair...I had one done while I was also under for complete pelvic reconstructive surgery. Sooooooo all the pain I felt afterwards was b/c of the surgery AND the hydro (I went home with a catheter for a week, a side effect of surgery). When it finally came out and I COULD (sort of) pee on my own I wasn't peeing razorblades (which I expected)-but I WAS peeing very VERY small amounts literally every 2-3 minutes. So it upped my urgency/frequency. It only started to subside after 4-5 weeks and it's been 12 weeks now...I still have urgency/frequency and pain with most foods...

                              I had hoped the hydro would give me SOME relief; expand my bladder capacity (which my doc said actually wasn't too bad considering how bad my bladder looked!). I don't think I'll be going in for another one, but it DID confirm my dx.

                              GOOD LUCK!
                              (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

                              Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

                              I'd like to be on House, MD as a medical mystery.

                              Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

                              Connor & Mommy by the tree:


                              Connor with Santa...so happy!


                              I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

                              Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

                              I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

                              Comment


                              • #60
                                I had both of my hydrodistentions done under anesthesia...I have severe pain in my urethra from catheters, and there is no way I could've done it without the anesthesia! I give credit to those of you who did it without it! I'd be so scared!
                                ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                                Proud wife since July 01, 2007 to Stephen & mommy to Fancy (our Yorkie)!
                                Diagnosed w/ IC in 2001 and IBS in 1999
                                Currently being treated with:
                                -Elmiron 100mg 2x/day
                                -DMSO instillations every 10 weeks

                                Comment

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