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Having an awful past 3 weeks

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  • Having an awful past 3 weeks

    Hi everyone, I haven't been on in awhile do to job change and my computer breaking down. The last 3 weeks have been the hardest I've ever had with ic. It all started with bad pain pressure, urethral burning. Went to my uro they said no bacteria was found. Gave me instills of Licdocain, sodium bicarb, and Elmiron. The instills helped but only for a few hours. Everyday I would call the office crying in horrible pain and they would do an instill... Finally they trained me to do it at home. Did it one evening and it helped for about 20 minutes. After that I was miserable again and my urethra was swollen and iflamed from all of the instills. I went back in the office and this time they found bacteria. I know I had a uti the first time I went to the uro. My ic knows I have bacteria before the tests show bacteria. They said that my home instill was what gave me the infection and pushed the bacteria even further into my bladder. I cried and cried. My Uro put me on Cheflex which I have been on before. I toke it all and started to feel better and my symptoms came back again. Uro calls and says Bactrim is what will kill it. Went on Bactrim 2 a day for 3 days. Once done , symptoms reacurred. Saw my uro's PA she said to go back on it for 3 days.. Went back on it. I have been off of it for 2 days and I in awful pain again. I see my uro tomorrow. I just hope I can manage to go to work. My pain doc up my Lortab to 2 every 6 hours but that just takes the edge off. I'm on all the right meds, Elmiron, atarax, elavil, ditropan, prosed ds, I am following the diet. I feel like I am in a horrible nightmare I can't wake up from. Every day is a challenge just to function. My husband has been my rock since I was diagnosed in 2001. That rock is starting to fall apart. He loves me dearly but doesn't know how much more of this disease he can take. Thank you to anyone that reads all of this. If you have any advice I would appreciate it. I felt very lonely and helpless lately, Thanks for listening, Rach
    When life hands you lemons make lemonade. But when life hands you a load of crap, don't make anything. Trust me on this one.

    Diagnosed in 2001
    Elmiron, Elavil, Atarax, Ditropan, Prosed DS, Hydracodone when needed

  • #2
    I'm so sorry you are not feeling well. This will pass with time. Easier said than done. Have you tried heating pads and water with baking soda? Have you tried lidocaine to help with the burning?
    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


    • #3
      I am too new to give any helpful advice, but I am sorry that you are having such a dreadful time of it. Feel better. Kathy


      • #4
        Ouch! Sounds like you're having a miserable time. I'm sorry you're feeling so horrible. My pain was some what under control for a month or so but now I'm getting almost the daily pain again. Unlike you, I know I don't have a UTI so it's back to the uro next week to see where we go from here.

        I hope your uro can give you some relief.

        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


        • #5
          I am so sorry to hear that you are having such a hard time. The past 3 or 4 weeks have been horrible for me too. I have had such bad pain and inflammation that I can hardly go to the bathroom. I literally drink 2+ liters of water a day and maybe 1/4 comes out because I get so dehydrated..I am scared of the installations for the exact reason that you pointed out. I have only had 2 but both were so traumatic and gave me an infection right after that I now have a total fear of them. Are you seeing a pain specialist? My pain specialist and I work out the medications that we know will benefit me and then he tells my urologist what and how much to prescribe. I have just started using lidocaine topically and it does take the edge off of the burning, especially when combined with a nice hot water bottle. I, too, feel the stress of IC on my relationship. I am getting married in 25 days! My fiance is well aware of what I go through for the most part..but there are some details just too personal to reveal..and I am totally depressed! How can you be depressed when you are only a few weeks away from marrying the most wonderful man you have ever met, known, loved, been loved does that work???? Don't isolate your significant other..sometimes I don't even realize I am doing it, I speak from experience!! The #1 thing is to get your pain under control. Heat, painkillers, valium, muscle relaxers, anti-depressants? However you de-stress, yoga, stretching..reading, animals..whatever it is for you. You are just having a really bad flare and it will pass, they always do.


          • #6
            I hope you feel better very soon.

            Stay safe

            Elmiron Eye Disease Information Center -
            Elmiron Eye Disease Fact Sheet (Downloadable) -

            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:


            Diet list:

            AUA Guidelines:

            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


            • #7
              Sending a hug & wishing you better days soon...

              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.

              New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
              Source - Pinterest

              Current treatments:
              -IC diet
              -Elavil 50mg at night
              -Continuous use birth control pills (4-5 periods/year)
              -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
              -Pyridium if needed,
              -Pain medicine at bedtime daily, as needed during the day several times per week
              -Antibiotic when doing an instillation to prevent UTI
              -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
              -Dye Free Benadryl 50 mg at bedtime
              -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
              -Managing stress= VERY important!
              -Fur therapy: Hugging the cat!


              • #8
                I am sorry to hear you having such a hard time. IC really sucks, doesn't it. I hope you start feeling better real soon.

                Take Care

                Let's keep praying for a cure.
                IC Symptoms began in early 2001
                Divorced : Sept 2002 (Partly due to IC)
                Diagnosed with IC in April 2004
                Most recent injury - Rupurtured Left Achilles Tendon
                Wed Jan 28 2009
                (Ice Storm Accident)
                2nd Achilles Tendon Surgery - May 28, 2009 after re-injury on May 17
                Other Injuries
                Broken Left Ankle - July 2004 ( fell off ladder)
                Broken Left Ankle (Again) - May 2005 (car accident)
                Sprained Left Ankle - November 2006 ( fell off my aunts porch on Thanksgiving Day)

                CURRENT MEDS
                Elmiron, Pyridium


                • #9
                  Feel better soon!

                  "Its a troublesome world all the people who're in it
                  Are troubled with troubles, almost every minute
                  Just tell yourself Duckie, you're really quite lucky
                  Some people are much more, oh muchly much more
                  unlucky than you!" Dr. Seuss


                  • #10
                    out there

                    i'm a little out there.
                    a conspiracy theorist..with the best of them.

                    i honestly believe that this whole ordeal is due to some resistant strain of bacteria...a strain not even known to man..which is why they dont have a test for "it"

                    my uti's began at age 19...i fell in a murky lake...came home, showered..but had sex later that night. my first uti happened the next am.
                    ever since then, it was uti after uti.
                    i was unisured..and kept paying out the butt.

                    finally i saw a urologist at age 21.i think he dilated my uthera..and gave me two huge bottles of cipro. (so i didnt have to keep comming back)

                    everytime i felt a uti come on..i would take a few..for a few days.
                    but, probably not enough to clear up the infection...just till i felt better.
                    i think thats how i built the resistant strain.
                    Quit ELMIRON due to hair loss
                    Cystoprotek ROCKS!

                    find me on FACEBOOK -
                    search my email [email protected]

                    Current Meds:
                    AM Cystoprotek & ATARAX 50mg
                    Dinner CYSTOPROTEK
                    PM Elavil 25mg


                    • #11
                      Thanks for all of your support

                      Thanks, to all of you who cared enough to reply. I feel for each one of you who are suffering as well. I actually saw my uro instead of the normal nurse or PA. She is having me take 250mg of Keflex a day since I feel somewhat better when I am on them. She also increased my Atarax to 50mg per day from 25mg per day. She hopes that might help with some of the constant inflammation. She said for some reason the cells in my urethra are attracted to E coli. Does that even make sense? She also said that out of all of her ic patients I was the worst. You know, I could of been very happy to have never heard that. Talk about kicking someone when they are already down. I take Prelief but I am going to try the baking soda. Wish me luck! For now I will just try to live day to day and take my pain meds when I need it. I pray the constant level of antibiotic in my system is the answer to my prayers. I'll keep you all updated. Again thanks for your concern and well wishes. I wish everyone many pain free days! Rachann
                      When life hands you lemons make lemonade. But when life hands you a load of crap, don't make anything. Trust me on this one.

                      Diagnosed in 2001
                      Elmiron, Elavil, Atarax, Ditropan, Prosed DS, Hydracodone when needed