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Questions about my symptoms & hydro, would love some input!!

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  • Questions about my symptoms & hydro, would love some input!!

    Hi all,

    I've had a very bad flare up for the past 7 days (well, really 3 weeks with a brief respite for a few days). I've never experienced anything so bad and this is the first time I've been house-bound b/c of it.

    I'm going every 10 minutes (though I could go more if I let myself)...the worst part of it is that even when I just go, I only get relief for a few seconds & as soon as I stand up, there's that feeling of "having to go" again. I'm going for my first hydro this Tues & am just hanging in until then, praying I'll be lucky & it will work for me.

    The big question I have on my mind is:

    How many of you have ever had this symptom (the "needing to go" feeling being there all the time) and urgency and have gone for a hydro and have been helped? Also, what did you do if those were your sympotoms & the hydro didn't help?? (ugh). I've done DMSO, atarax, Elmiron, pyridium, had a catheter in the other day (still felt like I had to go even though my bladder was emptying!)...
    I've very very frightened by the possiblity that this won't help b/c I'm literally just hanging in there, so if anyone has had symptoms like mine and has found that it helped for them (or didn't) I would love to hear from you.

    Thanks everyone, its wonderful to be able to turn somewhere for advice!

    Shelley

  • #2
    hi shelly,
    I was in your spot no to long ago, everything I tried failed I got relief from my first hydro when I was dx'ed in july 2001... I so my next opiion was the intestim.. I got relief from my first hydro when I was dx'ed in july 2001... this past hydro was feb 4th and it didn't help... But there were actually looking for other things with this hydro... b4 my interstim I was voiding over 25 times a day and up every hour at night...
    Donna has a few hydros and can answer alot of your questions.. hopeffuly she'll catch your post
    let us know how things go
    Brat
    'The will of God will never take you where the Grace of God will not protect you.'

    Comment


    • #3
      Hi Brat,

      Thanks for your quick reply! I just have a few more questions for you.

      What was it like for you in between your first hydro and the most recent one? (how many times were you going? what were the main things that caused you distress?)

      Also, did you have that "GOT TO GO even though my friggin bladder is empty" feeling? and did the hyrdo help this?

      Finally, congrats on the Interstim! Even though you go about 7-10 times, do you have relief from that feeling I described above & relief from other IC type of pain??

      Boy, I do hope something works, thank god for my fiancee who is doing just about everything for me now. My poor dogs (I have 2 basset hounds) need their mommy back for long walks!!

      Thanks again, I'm glad to hear that something worked for you
      Shelley

      Comment


      • #4
        HI Shelly

        I had my first hydr to dx in july 2001 it didn't help with my frequency but it did for the urgency for about 6 months. My urgency was so bad I literly got sick. I had brain freezes froze up couldnt think or move when I had to go it was now after holding for less then 5 min I was in the postion I just stated.. it was awful.

        I was going nearly every 15 to 30 mins it dependedon the day some were worse then others. so roughtly 25 times a day and up every hour at night. It seemed like everything caused distress, but they say adn I agree stress place a major role in ic.
        go to go feeling alway and actually still do at times..
        I had this last hydro because they were looking for a fistula and my frequrncy has picked up.. (right after my interstim implant I was going 10 times aday...) This hydro I had on the 4th of FEb did nothing for me.

        I wish I only went 7 to 10 times a day I go abot 15 to 18 times a day... the other day in 24 hours I did a diary I went 25 times and I only void 2 to 4 ounces and only 4 ounces 3 times... Even tho my freguency has picked up that horrid urgency is still gone and the go to go feeling iss not nearly what it was before my interstim.
        I have no relief from pain the interstim is not maid for that. I also have pelvic floor dysfuncatin, myofascial pian syndrom. and a couple more lol...
        I have a crew ) too, that only have run of the yard because I cannot get out to walk them bless there hearts..

        Brat

        Bear he's 75 lbs

        this is sir lucky and me.. and he was down very quickly hes 85 lbs

        this is piper shes 45 lbs


        me and my boys lucky and bear at bbt 6 months old

        and piper and lucky at the door wanting bear to come play
        'The will of God will never take you where the Grace of God will not protect you.'

        Comment


        • #5
          I think I must be the hydro queen! I was diagnosed in 1975 by hydrodistention and have now had the procedure 35 times. I have had significant relief from every one and go anywhere from six months to almost two years between. My last one was in July 2003 and I'm still going strong. I also have DMSO treatments once a month. If you have questions, I'll try to answer them.

          I read in an article in my uro's office that about 50% of ICers feel better following hydrodistention --- I feel very fortunate that it has worked so well for me.

          I hope you will be another who is in that 50%.

          Sending warm healing thoughts,
          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

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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

          Comment


          • #6
            Hi Donna, do you have any flares between your hydro/cystos? Also, do you watch your diet when feeling good? I had a Hydro/cysto almost a year ago and it worked wonders. I've had, what I consider, 3 minor flares. Do you wait for a major flare before having another one?. Sue

            Comment


            • #7
              Hi Shelley...
              On my worse days I also went every ten min ... Or more if I let myslef.. u r so right about the feeling of having to go as soon as u stand up... I had the hyro done in Dec. for me it didn't help at all... it made it worse...
              I started Dmso in Jan i have had about 15 since then.... And i have been pleased with the results... It took at least 6 or so before improvement... I do still have bad days .. but over all much better! my triggers for flare ups are stress.... And certain types of food or drink<if i cheat on my diet>
              my next treatment is aug 3rd and if i am doing well then up to six weeks yipppeeeeeeeeeeeeeeeeeeeeeee ....
              so hang in there.. i know different things work for different people....

              Comment


              • #8
                Hi Shelly:

                I had a hydro distention done about a couple of months ago and i have to admit that
                i do feel better. there were times before the distention where i would have to pee
                at least 4 times in one hour and now i am going probably every 2 - 4 hours.

                hope it works for you,

                sil1

                Comment


                • #9
                  Trying to catch Donna

                  Shelly,
                  Donna is my hydrodistention hero and I want to be just like her. What I really mean is that Donna is a a superior person, has a loving open heart, always knows the right things to say and that I get awesome relief from c/h too. I've only had three thus far.

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

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