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A Newbie

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  • A Newbie

    Hi ICN- My name is Andrea and I am a college student at UC Davis. As of Friday, I am being treated for IC. I don't know if you can say that I have been diagnosed with IC, but I'm taking 300 mg of Elmiron every day to rule it out as a cause of my severe pelvic pain... Let me start from the beginning...

    Last Summer, I went to the hospital with horrible pelvic pains. It was determined by my doctor the next day that I had Endometriosis to blame for my pain. He immediately started me on continuous birth control therapy and sent me on my way. As time went by, the pain came and went every few weeks.

    In December, I was flying to San Diego, when the pain came back it was the most intense it had ever been. It wasn't until I had gone to the hospital for the second time in three days and had been given Morphine that the pain subsided. From that day, the pain came more frequently and was much more intense. Nothing helped and I decided that the Laproscopy would be necessary in order to get relief.

    Last week I saw my doctor and, based on my symptoms and an exam, he was not convinced that I really did have Endometriosis. He then sent me to a Urologist, thinking that my pain was caused by IC. I quickly saw the Urologist that day, and he was not convinced that I had IC because, although I had the pain, I did not have the urinary symptoms.

    So that brings me to this board. Hopefully I can get some answers, because I still think I have Endometriosis and I'm basically supposed to take Elmiron for the next 3 months as a way of diagnosing/eliminating IC as a source of my pain. Take care ~Andrea
    **I could have my long list of current medications and diagnoses and the other medications that I've tried, but I'm going to focus on something more: words that inspire and motivate me to keep my head up and keep fighting.**

    "A bird doesn't sing because it has an answer, it sings because it has a song."
    "The honorary duty of a human being is to love."
    "The main thing in one's own private world is to try to laugh as much as you cry."
    "If you find it in your heart to care for somebody else, you will have succeeded. "
    "If you don't like something, change it. If you can't change it, change your attitude. Don't complain. "
    "The most called-upon prerequisite of a friend is an accessible ear. "

    These are all the wise words of my hero: Maya Angelou

  • #2
    My story is sort of similiar. I've been having severe chronic pain pelvic pain that sort of cycled with my period. Worse during ovulation and up until my period. My GYN did ultrasounds and said I had small uterine fibroids and small simple cysts on my ovaries and the only relief I would get is by getting a hysterectomy. Okay, never went back to him

    My new doctor did an intensive evaluation and by process of elimination diagnosed me with IC since my pain ALL started with a staph infection in my bladder in November. Like you, I don't have urinary symptoms. I don't have frequency/uregency and it doesn't hurt for me to hold my urine. From the first sensation of having to pee, I can hold it for a very long time and not be uncomfortable. I do have the pelvic pain. I was also diagnosed with pelvic floor dysfunction (I knew this for 7 years since my 1st daughter was born but never did anything about it). I am in physical therapy for that which just makes me sore all the time now.

    At any rate, my urogynocologist said if I don't see significant improvement in 4-6 months with the Elmiron, hydroxidine and instillations I will need laperscopic surgery so they can have a "look/see".

    I'm sorry you are in college going through this. There is no "good" time to be in pain, but you shouldn't have to worry about the is college. These are great boards with great people and you'll get a ton of information on here.


    • #3
      The Patient Handbook at has some very good information about symptoms and diagnosis of IC. You'll also find the IC diet there, which I suggest you try. If IC is what you have, the diet may help significantly.

      Elmiron can take six months or more to be effective.

      I hope you feel better soon.

      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

        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.