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Having my 1st Hydro/Cysto in a few weeks...

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  • #1

    Having my 1st Hydro/Cysto in a few weeks...

    I had my first appt with my urologist concerning IC. I was sent to him by my gyne, she thinks I may have IC. I have a urologist because about a year ago I found out I have a deformed ureter and it was blocked and they had to go in and unblock it and put in a stent. Anyway, he wants to do a cysto/hydro so he can see in my bladder and also he said by filling the bladder in some cases it will help with the pain if I have IC. He also wants to go in to check on my ureter and make sure it is not blocked again. If so, I will have a stent put in.

    I have been reading alot of threads and now I am unsure what to do. I have read alot of people saying they are in severe pain afterwards and worse off than they were before they had it done.

    I asked the Dr if I could return to normal activity the next day and he said I should be fine. I work 6 days a week and I need to know if I schedule this if I should plan to take a day or 2 off after the procedure.

    Can anyone give me some insight on what to expect afterwards. From what I have read on here, I can expect burning afterwards which I can understand. If you had to do it all over would you do the Hydro?

    I really like my Dr and I trust him but I just don't know what to do, especially hearing some of these stories and it really scares me.

    HELP....
    Thanks,
    Sue
    Dx with IC April 30 2007
    Dx with Endo Sept 2007
    Supra Cervical Hysterectomy April 9 2009
    Tags: None
  • #2
    Hi Sue,

    You have come to the right place for information. in regards to the procedure you probably need take off a couple of days to rest. after my hydro/cysto, I had burning and my frequency shot throught the roof, but I had no pain. Remember everyone is different so you may not experience any symtoms after wards, but i do recommend to take a few days off.
    Formerly lorenab

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    • #3
      Hi,

      everybody is different, but my opinion is: as long as there are other treatment opportunities available, and there is no hydro absolutely necessary for insurance reasons I would not do it. Yes, there are patients who receive good results but there are also lot of problems. Once it's done, there is no way back. You can't just stop it like medicine. I would never do it again. Sorry to be so negative, but if you were a close friend of mine, I wouldn't say anything else.
      I'm german, diagnosed september 2005 with mild IC. Current meds: Elmiron, Uropol-S, IC diet.

      Comment

      • #4
        My suggestion is to plan to take a few days off. I have now had forty hydrodistentions and I can't imagine how I would have made it through my 32 years with IC without them. I'm retired now, but when I was working I would have the procedure done on a Tuesday or Wednesday and return to work the following Monday.

        I hope it goes well for you.

        Donna
        Stay safe


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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]

        Anyone who says something is foolproof hasn't met a determined fool

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        • #5
          I recently had a hydro (my 8th one) these are my main treatments besides my medications. They do help me quite a bit. Yes, there is some pain but it usually last only a day for me. I usually have them done on a Thursday but I take off that Friday as well - this way I have 4 days to recover. By that Monday I'm usually able to go back to work. I'm an Administrative Assistant so I don't do a lot of jumping up and down (I sit alot), and if I'm really not up to par, then my bosses and co-workers knows it and they let me do what I need to do -- usually just computer work and when I'm 100% better than I can get up and do filing and lifting things but they also know that I shouldn't even do that for at least a week. Anyway, I don't know what type of job you do, nor what kind of bosses you may have-- some people aren't as lucky as I am and have understanding bosses. Good luck in your decision. Let us know what you do.

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          • #6
            I was REALLY worried about getting the hdryo/cysto done when my dr suggested it after reading all of the stories here. However it came down the fact that I trusted my doctor and I was hoping to get some answers from the procedure. I had my first hydro/cysto last Wednesday. I did wake up with some burning and discomfort but when I mentioned this I was given some IV pain meds and then after the cath came out I was much better, still burning but nothing I couldn't handle. They also gave me a vicoden before I left the surgery center. I took the rest of the week off and ended up calling out on Monday as well. I was uncomfortable but this was just as much from the fact that I still felt really really really tired for some reason. My pain didn't really get worse from the hydro, it def didn't get better either and in my case he said my bladder looked normal so I go in next Wednesday to see the results of the biopsy and figure out what he wants to do with me from here. Thought you might like to hear someone who did not have tons of pain and more problems after their hydro.
            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

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            • #7
              My advice to you would be to do what I did. I researched the hydrodistention on line and had my family also research it. Find out all the pro's and con's. The conclusion for me was that I decided not to have it done.

              Everyone is different though. for instnace, I know my body and pretty much know if something is going to effect me negatively, or at least I get that gut instinct, which I usually follow.

              I just had an appointment with my GI doc yesterday, and he is like the smartest guy I know. We were talking about the hydrodistention because I was telling him that my current uurogyne claims that the only thing that will help my IC is either the sinstillations( which I have done three times, and they help some, but I also get urine retention right afterwards and have to cath, which I am not to pleased about), Or she said the hydro is the only other help for IC. I told her no thanks. Well, my GI doc knew sooo much about the hydrodostention. He said that as a gasrto doc, when he does procedures on his patients, sometimes they have to stretch the stomach or esophagus, and he said that this brings relief for some patients as it kills off the nerves that cause the pain. (just what happens for some when they have a hydro done). But he also said that the opposite can happen to some people, where it will cause the nerves to fire off even more and therefore create alot more pain for some.
              He knows me very well and has been treating me for my stomach issues for a long time. He said that he did not think I should do the hydro and I that I made a wise choice not to do it. He said that it does help some, but for me, it would likely send me through the roof. I have nevre pain as it is, I get this unexplained throat burning that was so severe up until a year ago. I think that since my nerves are all messed up and my GI doc said that my pain signals are super hypersensitive, that doing a hydro on me would be like pouring gasoline on fire.
              So what I am saying is, You have to look into yourself and go with your gut feeling. And like I said, research it alot first. Most doctors will tell you( particularly the one who is doing the procedure) that you will be just fine. But they cant guarentee that, as with any proceudre. That is why you have to sign that " I cant sue if something goes wrong form" before any procedure.
              The hydro has helped alot of people, and it has screwed up alot too and made them worse. It is a very hard decision to make. Good luck and what ever you decide, I hope it all works out for you. Big Hugs.
              Jen

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              • #8
                Thank you all for your responses, I am just going to keep reading about it until I have it done, which is on April 30th. My main problem is I have pain/ pressure in my pelvic area. I don't urinate as much as most of you on here, I only go about 7-10 a day and only wake up once during the night. My main issue is the pain/pressure and the urethra stabbing pain. It is really bad during my period and for 10 days after my period ends.

                I will probably go ahead and have it done. I also have problems with my ureter and he will go in and check that out while I am under.

                I am having it done on a Monday and I plan on taking Tues off of work. I deliver mail, so I have some heavy lifting for my job and alot of standing and walking, I use a vehicle to delivery but I still have to get out at every corner, it is a very active job. If I do not feel up to par on Tues I will call and see if I can take another day off. It shouldn't be a problem. As long as he gives me vicodin for the pain I will be fine.

                Did someone mention a catheter? Do you wake up with one in? I go the week before my procedure to the hospital to go over everything and to have blood work, so I am sure they will answer any of my questions then.

                Thank you all for your responses, I am so glad I found this message board.
                Sue
                Dx with IC April 30 2007
                Dx with Endo Sept 2007
                Supra Cervical Hysterectomy April 9 2009

                Comment

                • #9
                  hi, my daughter is going to have a cysto with hydro on monday she is 14 tears old and they dont know if she has i.c. or not . any advice?

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                  • #10
                    hello, i'm loking for someone with endo also

                    ihello I am looking for someone who has endo . my 14yr old has been diagnosid , but had no lap to confirm now they want to do a cysto with hydo on monday to rule out i.c. my concern is what if there is endo in the bladder and will this cause alot of pain? ,

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