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puzzling IC symptoms and diagnosis- Ideas anyone??

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  • puzzling IC symptoms and diagnosis- Ideas anyone??

    Hello everyone.

    Just wondering if anyone else out there is in a similar predicament. I had a cysto and was diagnosed with 'severe' ic based on that in 2001. Since that time, I have done pretty much everything barring a bladder removal to relieve my main symptom which is frequency. Basically, I stand up after peeing and my bladder still feels full. Two months ago, after having a few months of success using Uracyst instills, I got another cystoscopy and I no longer have what looks like an ic bladder. I thought ' I'm cured!'. Well, we're back to frequency issues again. I am not sure what else to do at this point. I have gone back on my meds again such as vesicare, elavil and atarax and rescue and uracyst instillations. Also taking Quercitin, Aloe and Prelief. I really don't know where to turn. Does anyone else have a similar story to mine? What did you do or try? Is there something I'm missing here?

    Thanks everyone
    My story:
    31 year old teacher from Canada
    I have had ic for 8 years
    I currently take:
    Elmiron 2 twice a day
    Atarax 25mg a day
    Elavil 25 mg once at night
    Rescue instillations: First 9 over 3 weeks then starting a maintenance at once a week

    Aloe Vera capsules
    naturopathic medicines
    trying lyrica at 300mg 3x a day
    Trying Uracyst instills

    Based on Dr's findings during bladder distension was diagnosed with "severe" ic in Winter of 2006.
    Tried and failed:
    Ditropan xl ( Made me feel much worse)

  • #2
    HI, erikaic ~

    In hearing that you thought you were "cured" did you fall into bad eating habits that might have brought on your symptoms again? I know I'm constantly fighting my denial and when I begin to feel better think, "This just can't be a forever thing" and will treat myself to a couple strawberries, grapes, etc....than bam....back to instills and my meds to try to get things under control. I'm there right now, up at least 8+ times during the night in pain trying to "go" and you think I'd learn!!!

    It really seems like you've been doing so much to keep your symptoms under control.....I've no experience with Uracyst instills but maybe you need to continue with them?

    Prayers that you'll soon be feeling better. Since you felt better, you'll probably find the key to that success once again. Hang in there and keep us posted.
    Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found can you...keep the hope.

    11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
    8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
    8/2010 Surg gallbladder
    TREATMENTS (updated 4/15)
    IC Diet since 8/2009 (Able to vary 4/15)
    Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
    Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
    Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
    *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
    Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
    PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret


    • #3
      Hi, just a couple questions for you. Did the uro do a hyrdrodistention with the cystoscopy? If not, he wouldnt be able to get a proper look at your bladder wall. The glomerulations dont show up on a regular cystoscopy. So frequency is your major issue, is that right? Have you tried a bladder retraining program? This is where you hold your urine in for progressively longer amounts of time each week. If youre going every 15 minutes you would wait 5 more minutes the next week and then up the amount of time 5 minutes. This can take a few months to see results but it can work. It helps the nerves in the bladder to stop misfiring and telling you that you need to void. Its best to do this if youre not in a lot of pain and is better done with a partner or health practioner so they can support you.
      Diagnosed with IC in 1997. Currently taking Elmiron, Hydroxizine, Aleve, Ditropan, Glucosamine, Chondroiten, MSM Quercitin, Vitamin D, Probiotics, Co-Q 10. Also working on bladder retraining

      “The art of healing comes from nature, not from the physician. Therefore the physician must start from nature, with an open mind.”~ Philipus Aureolus Parcelcus


      • #4
        Hello Erika
        That's amazing that the results from each cysto were so different!
        I see in your signature that you were diagnosed with the cysto/hydro, so I'm guessing this more recent cysto included a hydro as well??

        I'm wondering:
        Did the same doctor perform both surgeries?
        Do you know how much you were distended each time? This information is included in the post-op report and should be listed in either mL or cc.

        I imagine you have tried Elmiron or Cystoprotek by now. How about an antispasmodic such hyoscyamine or one of the pee blue meds like Prosed DS? And definitely the diet.

        Keep us posted. I hope you find some relief soon.


        • #5
          Unfortunately, it can feel like you're "cured" when it's the medications and diet that are controlling the symptoms --- when the medications and diet go away, the symptoms return. This has happened to some ICers who were symptom free for several years.

          Just remember that you went into remission once --- you can do it again!

          Warm hugs,
          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


          • #6
            I have discussed increasing my meds when I am flaring with my urologist. I also take elavil (generic). I currently take 20mg. & he said I can go to 30 mg. when flaring. Maybe you can ask your doctor if he can adjust your hydoxyzine & elavil for you. Maybe you need to change some things in your diet also. I know how frustrating it is. I hope you are feeling much better soon!