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Is the hydro/cyto the way to go?

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  • Is the hydro/cyto the way to go?

    Hi all-
    I just had a very long talk woth my uro. I have been on 300mg of neurontin for a little over a week, and 25 mg of hydroxyzine at night. My nocturia has improved significantly, as has my pelvic pain.
    she said she would use these meds as first-line treatment, but really wants me to have the cyto with hydrodistention under anaethesia. she said I probably won't like her for about a week after I have it done, but that she would prescribe percocet for the pain, etc. at the encouragemetn of my fiance and her, I've agreed to have it done...
    so, what can i expect? In 2005, a male uro i was seeing performed an in office cyto and a urethral dilation. It was HELL. After about 3 weeks, though, I really improved, except for nocturia. Nothing flared up again until august 2006, and I've been in the battle on and off ever since.
    Another uro, last August, did the potass K test, and defined it as classic Ic, even though the results were inconclusive. The catheter was the worst.
    Lately, I've really been struggling with this. I'm getting married in the fall, and I REALLY want to get this under control. My pain has never been incapacitating except after the cath and the cyto in office.
    I'm scared for the cyto with hydro but this new uro seems so thorough...she has done so much to alleviate my worries about recovery, and what she will give me to help mange that. She said many of her patients have experienced months of relief...based on my history, and response to neurontin, hydroxyzine, and spirulina (for bladder coating) she thinks it's mild to merate at best....
    it's just soooooooooooo much to deal with. I'm very fortunate my pain isn't usually bad, but it can be a relentless ache. Some days not at all.
    should I have the cyto? I have to get well- my wedding, my honeymoon!

  • #2
    The Cysto-Hydro is considered the "gold standard" of diagnosing IC as well as a treatment for some. There are lots of people who receive lots of releif after they heal from the procedure. This could help you, even though it may be painful for a few days. Some people get such great releif they go every few months to have the procedure repeated.

    IC diagnosed officially via cysto/urodynamics 1/26/07

    Grade II Endometriosis diagnosed via lap 12/11/07

    "Fall down seven times, Stand up eight."

    "Life is a tragedy for those who feel and a comedy for those who think."

    Current Treatments:
    Interstim Since 5/25/07!
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    • #3
      Had my first one on Monday...

      I had my first Hydro/Cysto on Monday April 30. My urologist gave me pics of my bladder and it looked like a blood shot eyeball. Yes I was officially diagnosed with IC. What a bittersweet day!

      Actually I felt great after the procedure and the following day until that afternoon, I was just really sore in my bladder area and on my left side, he also went into my ureter since it is deformed just to check it out. I went back to work on Wednesday, but you do have to give it 2-3 weeks before you know if the hydro helps with the pain. He did give me antiobiotics and pain meds and also pyridium. He also felt something hard on my right side by my ovaries so now I have to go back to my gyne to find out what that is about. I had no problems with my Hydro, but I do very well under anesthia (SP). I wake up very happy, so that is not a concern for me.

      It is very tough decision to make, I almost opted out of it myself but I am so glad I went through with it, now I know for sure what is wrong with me and now the next step is to try to see what works for me, I know it will be a long rough road but it is the next step closer to getting my life back.

      Best of luck to you.
      Dx with IC April 30 2007
      Dx with Endo Sept 2007
      Supra Cervical Hysterectomy April 9 2009


      • #4
        This is one of my treatments. have it done every 6-8 months. Yes, I'm in pain for a few days, this is why I schedule it on Thursday so that I can recover and hopefully return to work on Monday (i have a Office job so I usually go to work anyway and do what I can - sit with my heating pad, take my pain medications and work a percentage then when I'm better make up for it.) Between this and Elmiron I do ok. I also watch my diet, but I'm not as diet sensitive as others. Good luck if you decide to go with it.


        • #5
          Just like Erika my uro told me that the hydro/cysto was the "gold standard" to diagnois IC. I have read that a lot of people get pain relief and relief from syptoms for months after they have it done. I was not one of the lucky ones that had relief, I had mine done about a month ago. I did not have too much pain though. My bladder was sore and I was just really tired for a couple of days. Go with your gut. I had read that some people wished they hadn't done the hydro but I asked my uro lots of ?'s. I had lots to ask after reading all the great posts here. I asked if any of his patients had ever gotten worse from doing it, he said no, I believed him and trusted him so I went for it. I'm glad I did, I wanted to know for sure this is what I had and I was hoping that I might get relief. I didn't, but at least it was worth a shot.

          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


          • #6
            What a tough question. First of all, congratulations on your marriage!! I just got married 2 years ago and am loving it. Don't get me wrong, there are many hard times, but it's just nice to always have someone who you love around and who loves you!
            I had the cysto/hydro and I recovered in about 2 days. You will probably have bad urgency when you first wake up and blood in your urine for the first few times you urinate. It hurts too - mostly when you pee.
            It is a really good test because the doctor can how damaged your bladder is and what it can hold. A normal bladder holds 1200mg of fluid (I believe) and mine was at 700 which my doctor described as severe. I didn't get any relief from the surgery, but it sounds like you might.
            If you are in bad pain from this I think you should do it. If not, I wouldn't. I did feel like my capacity lessened from the proceedure. It was only right after it that I began getting up at night to pee. Before then, I could make it throught the night. I have so much pain from this disease. It was good to get a diagnosis and rule out a possible treatment.


            • #7
              You should research the procedure and read up on it, that is what I did. I personally decided not to do it after my hubby and I researched it and had my GI doc and my gyne both agreed that it was not the best idea. But that is just me and my doctors know me very well and felt It would likely make me worse.
              Some people get great relief from the hydro and some get worse and then some stay the same. It all depends really. I told my urogyne that I would keep it in the back of my mind as a last resort thing, meaning if nothing else works for me or after I have exhausted all other means.
              Good Luck in what you decide to do. Just go with what your gut instinct tells you.


              • #8
                My best suggestion is to learn all you can about the procedure --- and then make your own decision. I am one who gets a great deal of relief from hydrodistention and in my 32 years with IC I have had the procedure done forty times. The last time was in February 2006 and my symptoms are just beginning to return. I will deal with a few days of discomfort for 14 to 15 months of relief.

                Warm hugs,
                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.

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                • #9
                  The hydro helped me greatly. I was never in any pain after. The Doctor gave me pain meds and I took them. I was told by another IC friend to stay in front of pain when you are Expecting it. I was able to lay in bed and baby myself. I know a lot of people can't always do that. I was up and around in two days. Since you wanted to know what others have experienced I wanted to add what mine was like. My OBGYN only put water in me and took pictures, no chemicals. Never let anyone do this to you unless you are "OUT" Even my DR. says that would be barbaric. Good luck, Ziggy


                  • #10
                    I am helped greatly by hydros and while there is a risk when you have any procedure done if it helps in the end then I think it's worth it. I have had 11 hydros in the past 15 years. It usually takes me a couple of weeks to feel like myself again but to me it is worth it.


                    • #11
                      Thanks to all of you for your supportive answers.
                      I haven't decided yet...
                      I actually (knock on wood) have been relieved of pelvic pain for about a week now, but did pass a kidney stone on Sat! Totally separate issue...sigh.
                      Anyway, my pain issue seems to have improved dramatically. I also started acupuncture. The next day I only went about 9 times!
                      But is it worth is for the frequency/urgency? Or should I just let the hydrox, neurontin, and acupuncture take their course? I need to make a decision by June 4th.
                      You ladies are the BEST!!!!!!!!!!!!!!!!!!!!!!


                      • #12

                        If you are looking for definitive and conclusive evidence and confirmations, the procedure is the best thing you can do. It really wasn't as bad as I thought it would be. After a couple days, I was not feeling very bad at all. Best of luck in whatever course of action you plan to take. Warmest regards.
                        Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

                        Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

                        Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.


                        • #13
                          I had the Hydro/cysto and botox done at once on March 2 2007, Hydro/cysto was done to mostly because I wanted it done to see what is really wrong with my bladder. I needed to know for sure not, I didn't want to be told I had IC just from symptoms. He did the hydro and he told me my bladder was a bloody mess. he said there are cracks everywhere and everything else. He said your bladder is bad and it is deffinitly IC. My bladder only holds 200cc awake and during the hydro he could only get it to 450cc. All of this is piece of mind to me now.
                          I did go from 30 time a day to 8 to 12 it has helped me alot but he truely thinks it is the botox not the hydro. Because we really don't know which one helped. When I do it again and I will because of the relief I had. I will have him do it the same way.

                          I have a sensitive urethra also and that bothered me for about 2 to 3 weeks but peridium worked great for that pain. Next time I will use it longer than I did.
                          good luck
                          IC/IBS Hopeful : I had my bladder removed on September 29, 2008 for me but I am also so happy I have no regrets


                          • #14
                            The best advice I can give you is that you should research this test before having it done. Maybe even talk to your regular doctor about it or your gyne and see what they say.

                            I personally decided not to do this test after researching it and after two of my doctors ( my gyne and my gastro doc) recommended I not do it. There are other things you can do. For instance, if you want to just make sure it is not cancer, you can have a regular cystoscopy done to rule that out. If you ruled that out and other things, then you likely have IC, especially if all the signs fit. My gyne said when women come to her complaining of these symptoms, she prefers to try the less invasive stuff first like try them on elmiron and possibly elavil first and see if it helps.

                            There are some women who get some relief with the IC from doing the hydro, and that is good. But there are women who get no relief and some get even worse after the procedure. One of my friends said she bled for a week after the procedure and that is how they diagnosed her IC. I kind of wonder if the hydro itself was to blame for the cause of all that bleeding and not the IC itself. My gyne told me about a trial they did where they did the hydrodistention on people with IC and people without IC. She said a few of the ones without IC had the pinpoint bleeding and were diagnosed with IC, when in fact they did not even have it.

                            I am a very skeptical person now days when it comes to taking tests and such. I have alot of health issues and have seem many doctors, alot of bad ones, and a few good ones. I have learned to research all things and ask my doctor as many questions as possible before making a decision in terms of taking tests and doing invasive procedures. You have to ask what benefit this will give you by doing this procedure, as well as what are the con's about doing this test as well as what are all the possible things that can go wrong etc..... I also usually get more than one opinion as well by possibly asking my other doctors what they think.

                            Good Luck in what ever you decide to do and I hope you get some relief soon.


                            • #15
                              Glad you are doing better! Where are you going for your honeymoon?