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Confused about IC??

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  • Confused about IC??

    I'm currently on OAB medicine. THis is my fourth one. Not sure if it is working yet. I don't have any bladder pain. My problem is frequency. And, for the past 6months to a year burning in my urethea that lasts for a couple of days. Then goes away.

    In two weeks doc wants to do cysto to check for IC. My question is does Elmiron help with the frequency of having to urinate all the time. Or is it just for the bladder pain that people describe here.

    Will there be relief for me?? Help.

    Thanks in advance.

  • #2

    I know some others will be answering you soon and they are much more knowlegable than I am but I will give it a shot. In my experience, Elmiron doesn't immediately help with any symptom of IC. As my doctor described it, Elmiron actually gives you a "fake" new lining on you bladder which then protects your own bladder wall and allows it to heal. As it heals, your symptoms will start to improve. Other drugs, like Elavil are strictly pain killers that deal with the pain. Elmiron helps heal you overtime. It might take you a few months but it will help with frequency because the bladder won't as irritated as it is now.

    Does that help, or did I make you even more confused? I hope I helped.


    • #3
      Hi mom2angels97,

      lnseagraves is right, Elmiron is healing, not strictly for pain. Have you had your urine tested recently? Do you think you could have a bladder infection?

      What happens if you drink a glass of cranberry juice? Does it help or hurt? If it hurts, or makes your symptoms worse, you probably have IC.

      Once way or another you will find relief.......there is no doubt about that. The first step is to get a correct diagnosis.

      Take care...........

      Julie Beyer, MA, RDN
      IC Dietitian, Patient Advocate, Speaker, & Author

      Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

      Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

      You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

      ........ ........

      Other IC Diet Resources:

      IC Diet Webinar
      IC Diet Website
      For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
      Free IC Diet Booklet: What Can I Eat?
      Confident Choices IC Diet Blog
      IC Diet Newsletter

      *Let's Connect!*


      • #4

        Yes, I have had my urine tested and had all kinds of tests. All negative.

        Just need to urinate alot. Have been. since I'm young. Just seems to have gotten worse as I get older. I'm 39. I have had 3 children so far.

        Thanks for all the replies so far. As in my previous post, alot of people here, talk about the bladder pain and I don't have bladder pain.
        So, I wasn't sure if urinating alot is a sign of IC??

        Thanks again.

        I hope everyone get some kind of relief!!!


        • #5
          Hello there..

          I take Elavil and it helps with my frequency and pain.. I still have buring every now and then and dont quiet know what causes it..So I try to drink alot of water to keep my urine diluted..I also take enablex and it seems to help that urge feeling..As far as Elmiron, I have not tried it yet because I am scared of the side effects, but maybe one day I will..The IC diet is great, I do not have to follow it completly but I do stay away from all the Bad foods.. I seem to be able to eat all the may be ok foods..Well I hope you can get all your answers..And welcome to the ICN...

          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.


          • #6
            Hi and

            I take Elmiron which helps with my pain and frequency. I also just started to take Vesicare for urgency. This has really helped - especially at night where I was getting up and going anywhere from 6-7 times to now its 1-2 times. (This is a big plus for me as I work full time so now I'm able to get some kind of sleep again!!) The diet also helps, although I'm not as diet sensitive as most people are--we are all different. Staying away from coffee (I could drink some, depends on the brand-can't drink it at work as I don't know what kind they use! so I drink Celestial Seasonings Honey Vanilla Chamomile Tea, which is really great- and I not really a tea drinker or at least I wasn't until my doctors told me that I should stop drinking coffee); sodas is another thing you should stop. Water drink plenty of it. Others will get on board I'm sure and give you some helpful hints.