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  • Flare?

    I've never posted here before, but I come here to read posts every once in a while. I'm not very educated when it comes to IC and that's mainly beacause my doctors are not really educated in it. My urologist now doesn't even call me back so I'm not sure what I'm supposed to be feeling and what is normal. From what I've read, I don't have IC half as bad as a lot of people. But sometimes I feel that I cannot deal with my symptoms. For the past month, I've been having some pain, and pain when I pee. (It feels like the pain is in my bladder). Is this normal for IC? My doctors thought the pains I was describing (sharp pains lower abdomen near the thigh) were from endometriosis, but my GYN doesn't think so. She said it was probably nerve pain and told me I should see a pelvic floor physical therapist. I have a lot of trouble sleeping at night and sometimes resort to pain killers to help put me to sleep. I just feel like I don't have a normal life. I'm on Elmiron and Vesicare. Lately I've been peeing a lot more and in pain. Would this be a flare and does anyone have any suggestions? Thank you.

  • #2
    you will learn a wealth of info within these pages. Have you been dx'ed with ic? It could be endo or a number of other things. I think that your doctors really need to start doing some testing. I was handed from one doc to the other saying it was the others problem. sending you hugs. So sorry you are in pain.
    'The will of God will never take you where the Grace of God will not protect you.'


    • #3
      I've had two bladder stretchings.... the hydrodistention or whatever it's called. And several ultra sounds, catscans, MRIs, and even a colonoskopy. They are sure it is IC, but I'm not sure that they know what they are dealing with. I'm starting to think I need to change my urologist for the second time, but I'm afraid that I will get the same results; doctors not educated in IC problems.


      • #4
        I have IC and Endo.. They are very similar as far as pain, But with the Endo it never made me pee more and I think your GYN could be right, It does sound alot like PFD, But you really need to find a Uro who knows about IC..Sorry you are feeling so bad...

        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.


        • #5
          I sure hope you feel better soon. This is a great place for information.