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Not diagnosed yet, confused, do hydro?

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  • Not diagnosed yet, confused, do hydro?

    Hi everyone,

    I've been reading about IC because I've been experiencing frequency for many years along with a myriad of confusing symptoms. I've always wondered if IC is something I might have. I feel this is a safe place to share, and I hope for some advice. I will try to describe my symptoms.

    From what I've read, my symptoms sound mild and come and go - good days, bad days, even good mornings or evenings. I've never had pain or burning/pain when urinating, but I've had feelings of tightness and stress in my vaginal area - that's the best way I can describe it. Sometimes it feels like it takes away the stress to use my muscles to hold everything up - like when you do Kegel exercises.

    When all of this started years ago, I noticed that after I'd peed that if I waited a little while, more dribbled out and again and again - like something was spasming. (Sorry for being gross.) I'm often aware of my bladder and the urge to go. One day last week I had such a bad morning - I drank 1 glass of water and 15 minutes later I had a strong urge to go, and I went 4 times after that within the hour! This has happened before but seems to be the exception. However, it CAN'T be normal. I also often have a pathetic stream.

    I get up regularly once a night, but some nights, 2 or 3 times. Sometimes my position in bed - one side or the other - puts pressure on my bladder and creates the urge to go. I even think my bowels affect my bladder. Sometimes before a bowel movement, everything feels great, but after, everything is stressed out again.

    I've been to several uros, and they've given me OAB meds, which I'm not sure have helped. My symptoms don't "sound" like OAB - I've never lost control or had to RUN to the bathroom. Docs have also tested me and said I'm emptying my bladder. I've never had a sign of infection, and I've actually never had a UTI in my life. But I can't figure out the frequency and the feeling of the urge to go. I don't know what it feels like to not notice my bladder.

    Whew! That was hard! Thanks for listening!

    So my most recent doc has mentioned IC and recommended the cysto with hydro, and I have it scheduled for June 11. Now I'm totally freaked out about the test. I'm scared that it might make these mild symptoms worse. But on the other hand, I'd sooooooo like to rule out IC because it's been at the back of my mind for so long. I really just want to know what's going on with my body. Should I try another round of meds? Or should I just get the cysto over with?


  • #2
    The vast majority of people who have hydrodistentions will recover in two to three weeks --- and some find the procedure relieves symptoms. There's another test, the potassium sensitivity test, that you might want to ask about before your hydro.

    Stay safe

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    • #3
      HI! I have the same 'pee' problem you do....I go....then stand up and then have to go a little more....and that can happen a few times before I feel like I'm actually finished. Also I have the BM problem.....tho I've never been officially diagnosed with PFD (and don't want any tests to find out for sure!) but I'm classic for all that.
      I've suffered from IC for 25+ yrs and back then they didn't have much in the "testing for IC department!" SOOO I'd say try the tests and see if it helps or not.........and hopefully they'll get good diagnosis from that.
      Have you tried all the other meds for IC besides the OAB stuff? Did you try Elavil? That really helps lots of people with frequency and urges. Let us know what you decide to do......hope you get it all figured out and you feel better soon! Roxie

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra's amazing stuff!!:woohoo:


      • #4
        I am no doctor but everything you explained sounds more like PFD.. I would check into that before you put your bladder through the stress of a hydro..

        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:

        Diet Reference Sheet:

        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.


        • #5
          I also have the issue where after I pee and think I may be finished, then I can get more out. Lately this has gotten worse for me.
          As far as the hydro/cysto, that is entirely up to you. Has your doctor given you anything like elmiron to try?


          • #6
            How is PFD different?


            Thanks for the replies. How is PFD different from IC? Is it possible to have PFD and not IC, or do they always go hand in hand?

            Should I ask my uro to evaluate me for PFD before going through with the cysto / hydro?

            With the cysto / hydro, I think I can deal with any discomfort from the procedure. But my primary fear of the cysto / hydro is that it will do something to my bladder that will permanently make things worse. Has this ever happened to anyone?

            Thanks for the help.


            • #7
              As far as the hydro making things permanantly worse, I cant say personally as I have never had the hydro done myself. You will likely get a ton of different answers though since this test seems to effect everyone differently. There are some that are helped by this procedure, there are also some that get alot worse, and some that just stay the same. I think you should research the test, maybe even talk to your primary doc about it or your gyne, maybe they will know something about it and be able to give you some info. That is the thing about this disease, it reacts differently for everyone it seems.
              I have alot of neuralgia pains as it is, so I opted not to do the hydro after getting opinions from the gyne and my gastroenterologist. They both seemed to think it would likely put me through the roof, and I believe they are right. The uro's believe that by stretching the bladder beyond it's capacity can mess with the nerves and stop the pain, and it does for a few people. But also, I was told by my doctor that it can make the nerves double when they regenerate and cause even more pain in some people. Since I already know I have nerve pains elsewhere in my body, I decided this would be a bad idea for me. But that is me, I just had a feeling it was not the way to go for me.
              Like I said though, some people get relief from it and it has been the best thing for thing for them. I know that the hydro will always be there if I decide I want to try it, but for me it will be a last resort. Good Luck, and I am sure others will chime in with their experineces.



              • #8
                I am also trying to decide whether or not to do the hydro. My uro put me on meds in March and told me to come back in June. In a week and a half I will have my uro appointment and they have already discussed with me about scheduling a hydro. I think I am going to ask about the pros and cons and then ask if I can do the potassium test first. Can the potassium test tell you to what degree your IC is in? Is one test for reliable than the other?
                Diagnosed with IC - March 2007
                Diagnosed with vulvodynia - June 2007
                -Lots of prayer
                -Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
                -Taking Prelief as needed (stopped because of pregnancy)
                -IC diet