No announcement yet.

New here :)

  • Time
  • Show
Clear All
new posts

  • New here :)

    This is my first post so I suppose I will share my story. About 5 years ago I started with pain throughout my body. I have been through pain management, chiros, numerous doctors and was finally diagnosed with Fibro. I have had terrible luck finding a doctor to treat it as the docs around there tend not to believe in it. So I have been told I have to learn to live with it. About the same time I started with what I thought were UTIs. I would go in to have a urine dip and it never showed infection, only hematuria. The doctor at the time treated me with antibiotics and said it was an infection. I had to change doctors and only when my records were transferred I was told I never had these infections. I had a cystoscopy and an IVP which showed a tiny stone in my kidney. Then my Urologist moved away. I continued with problems and still show hematuria in my urine dips. My doctor just looks at me like I'm crazy because it never shows infection. Within the last year I have started to feel like I cannot empty my bladder fully, it seems I really have to push to get the last bit out. I also tend to have little accidents through the day. If my bladder is full I have to get to the bathroom quickly or else the urine starts to come out on its own. I also get cramping in my urethra, which seems worse after orgasm (I'm sorry if that's TMI). Lately I wake up 4 - 6 times a night with extreme pain in my bladder which is so bad that I cannot stand up straight, but it seems to go away after i urinate.

    I am finally going to another Urologist and hope to finally get some answers. Does this sound like it could be IC to you?

    Thanks for reading


  • #2

    You will find alot of helpful advice on 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.


    • #3
      It sounds like IC to me. I have a lot of similar symptoms to you, and I know you have some that I've read that other patients have. The big one for me is the fact that you seem to not ever actually HAD the true bladder infection. My urologist also is fairly sure I've never had an infection, just flares from my IC. Definitely see a urologist and bring up the possibility to him. I know you can do an IC diagnose quiz that you can print out and show him. That can help convince him to seriously consider IC as a possibility for you. I think it IS a definite possibility for you. Good luck


      • #4
        It does sound like IC is a possibility. The Patient Handbook at has some helpful information on symptoms and diagnosis.

        Please don't strain to urinate --- it will just make it worse. One thing that might help is to stand up part way after you urinate --- then sit back down. Lots of times that's all it takes to get rid of that last little bit.

        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


        • #5
          Thanks for all your kind words. I think I will try to stand up after urinating to see if that helps.