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    I am so frustrated I could scream! I am having
    trouble getting help for the pain from my uro's
    office. Had my 3rd DMSO/heparin instill on Fri-
    still making symptoms worse. I am in constant
    pain--trying Tylenol during the day with stick
    on heat pads so I can get through the work day.
    When its really bad at night, and for the first
    couple of nights following teh instill, I take
    Urelief Plus (pyrdium plus) & either 1/2 a B&O suppository or 1 vicoden or percoset. Unfortunately, I have no vicoden left (they work the best) and my dr says they will not prescribe anything alse for the pain. I never can talk to my dr, only the nurse who does the instill. Today she is havign the phys asst call me back, as he's
    the one that says no pain meds. I am rationing
    the B&O & percoset (perc does nothign for me( as I am so afraid. I absolutely cannot miss any work--my partner in the office is on medical leave, and I already missed 4 days in early Jan due to the disasterous cysto/hydro.
    I do not know what to do to get help with pain.
    I try warm bathes, heating pad, relaxation exercises, etc.
    I also posted to see if anyone knows of any drs in
    WI that are experienced with IC. My clinic Baycare Uro in Green Bay, sees 5-10 IC patients
    a day, but I seem to know much more about IC than they do (and I only was diagnosed in early Jan!)
    Any suggestions on what I can do for pain mgt?
    I am at my wits end!!!

    Thanks so much,


  • #2

    Sounds like we have Uro's with the same apathy for pain relief issues.
    In 6 months my Uro gave me a script for 15 Hydro and 3 months later another 15. That is just not enough to go around when you have very severe IC, I even told him I was very suicidal because of the pain but his apathy became even greater. It got to the point where the Uro could no longer help me , we had tried over 32 drugs most which failed with the exception of Ambian, I was getting no sleep!! (Maybe 4 hours in the morning, staying awake and in gastly pain alllllll night, watching the damned sun come up!) He took that away after 2 refills saying it was habit forming, for someone who watches the sun come up after not sleeping all night I do not think a pill to help regulate a natural pattern of sleep is addicting!
    I am going to my Family Practicioner who is very sympathic to my cause, he has seen more tears, anxieties and pain on my face and seems to relate to me much better!
    The best suggestion from me would be for you to ask this Crappy Uro for a referral to a Pain management Anesthesiologist, my Anesthesiologist saved me from horrible pain, I had a series of 4 Stellate Ganglion Nerve Blocks that really helped and have made me want to live again, some days are still hard, I have to remember to drink a lot of water! But instead of using Oxycontin,Oxycodone & Hydrocode I get away with JUST Ultram for Pain!! It is unbelievalble!!
    I hope you find someone who cares and is knowledgeable about IC pain and they can help you!!
    Much love and concern,
    Jessica Day JessicainArkansas
    [email protected]


    • #3
      At the last IC conference this fall in Washington D.C. the doctors reported that they think IC is an auto immune disease and is caused by not having a certain cell in the bladder wall. These cells don't grow back after trauma or infection. DMSO treatments and hydrodystentions were being performed to trigger the bladder to regrow these cells. Now the doctors have discovered that they won't grow back. Some people don't respond to the treatment at all (I have a friend that was given the DMSO incorrectly and has horrible nerve damage) The doctors aren't sure why some people do respond to the DMSO treaments and hydrodistentions...the act sometimes does help the bladder in some patients. They're doing more research. The convention was the Interstitial Cystitisis Association and my friend's husband and mother went and told me all about it.
      If 3 DMSOs caused more pain and didn't help, I personally wouldn't do any more. If your uro won't help anymore, it might be time to find someone else. And them not giving you vicodin is unbelievable. That's not even that powerful. I did better getting pain control from a pain management doctor: he was an ob/gyn who specialized in pelvic pain therapy.


      • #4
        Hi Mimi,
        Do you have any references on the DMSO and the cell growth issues, I would like to read up on it before friday when I see my uro.
        One day at a time


        • #5
          When I first started with DMSO instillations, they were very painful for several days after each instillation. I was ready to stop them when one night I slept the entire night without even one bathroom trip. That was enough to convince me to continue. I'm on a monthly schedule now and it does seem to be working.

          My uro does give me pain meds for after DMSO treatments if I need them. I suggest you make an appointment to see the uro. And if you can't get that appointment, it might be time to look for another doctor --- at least for a second opinion.

          Sending warm healing thoughts,
          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.

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


          • #6
            I agree that a pain clinic will be most helpful. When my meds don't help any more they change me to something different or stronger. I'm on morphine Imediate release now because the Lortab 10 (hydrocodone) didn't last longer than an hour and I was in terrible pelvic pain. I have had 3 nerve blocks too. Unfortunately the last two didn't help. I'm unfamiliar with your type of nerve block Jessica. I had a hypogastric plexus, which they told me was the location of the injection. They injected a steroid. Did yours involve a steroid inj?