No announcement yet.


  • Filter
  • Time
  • Show
Clear All
new posts

  • Hello

    Hello everybody!
    I was diagnosed with IC/ PBS last year after a cystoscopy. Had first cystoscopy in 2003 which showed nothing unusual. Had what I initially thought were repeated UTIs for the past 8 years. There were UTIs actually, maybe that is what made it difficult to diagnose. I think bad UTIs is what contributed to the IC. I also get kidney stones. Before 2002 I never had any Urinary problems at all ever even as a kid. My bladder is about 250ml max I was told it's smaller but not too bad. I hope it doesn't get any smaller. I don't have any ulcers that they saw but I did and do have persistent pain in some areas if my bladder more that other areas. For years I did not even know where my chronic pelvic pain is coming from as a Gp I used to go to just written it off as soft tissue damage, he tried to help, sent me to physio. A gynecologist sent me to a psychologist actually saying the pain is psychologically based. I didn't go to either psychologist or the physio as I knew it wasn't psychological and was too sore to go to physiotherapist. It took a while to diagnose like a lot of people here.. After the diagnosis I was tried on antihistamines for 6 months which had no results. Now I just take panadeine (paracetamol with codeine) or ibuprofen.

  • #2
    Hello and Welcome..

    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.


    • #3
      to the IC Network. I know you'll find a lot of information and support here.

      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


      • #4

        Thank you I already am finding a lot of useful info and personal experiences. I don't know anyone personally who has IC and reading other people's experience (while can be upsetting) helps.