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Newly diagnosed with IC

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  • Newly diagnosed with IC

    Hello everyone. I have already found this website to be very useful. I was just diagnosed officially with IC this past Monday, but have been dealing with IC symptoms off and on for the last 3 years. I have IBS with constipation and was diagnosed with "irritable uterus" when I was pregnant with my second child. It just seems as though my entire abdomen is irritated and not happy being in my body. It seems that I deal with some sort of abdominal pain almost every day. I rely strongly on my faith to get me through. Bladder pain/pressure is a mind-consuming discomfort and not easy to forget or be distracted from. I did have my first bladder DSMO instillation last Monday. I feel that it helped the first couple of days, but now that it is Sunday I am feeling a lot of discomfort. I go back in tomorrow for another instillation and then again the next two Mondays. I am also taking UTA 3-4 times a day. I guess it helps alittle. My urologist also gave me some Amitryptyline to take at night to help me sleep (I have a lot of discomfort when I lay down). The Amitryptyline makes me soooo sleepy the whole rest of the day, so it is not practical because I have two small children and work as a nurse full-time.
    Thank you for taking the time to read my story. It feels nice to know that there are others that can empathize with my situation. It helps to know that I am not alone. God bless you!


  • #2
    I am a nurse too who works full time and I have a 6 year old with autism. I have been diagnosed for about 4 1/2 years now but had symptoms well before that. I know that some of my nursing habits made me worse like holding my urine too long(although now my body doesn't give me the choice anyway)and Coke which I drank like gang busters at work. Changing my diet has helped quite a bit, and I wound up going to pain management to hit that combo between taking surviving the pain and being able to safely care for my child. The IC handbook here is awesome, as are many of the books in the store. I also gave up hospital nursing as well--giving up 12 hour shifts has been a blessing. There are a quite a few of us crazy nurses here on the boards whom I'm sure will pop up. Just wanted to say hi and welcome you!

    Hugs and ,
    (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

    [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
    :angel: IC Angel Volunteer Coordinator :angel:
    :) Contact me via PM or e-mail if you would like to help
    I have learned all about life in 3 words: It goes on! :D--Robert Frost
    PCOS 7/85
    RSD 7/94 :headbang:
    Endometriosis 9/98 :toilet:
    Antiphospholipid antibody syndrome 9/99
    Kidney stones--too many to count
    Factor V Leiden mutation 10/02
    IC 6/03 :evilsmile
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    "Spirit is an invisible force made visible in all of life"--Maya Angelou
    "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]


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

      I do have some suggestions that might help --- first is to put yourself on an IC diet. It's in the Patient Handbook at --- some ICers find that single step helps more than any.

      What dosage of elavil have you taken? It comes in as low as 5 mg doses and sometimes a very small dose, such as 5 or 10 mg will help with pain. I suggest you contact your doctor and ask about lowering your dosage to see if it still helps.

      It may take a while to find just the right combination to feel better, but most of us do.

      Warm healing thoughts,
      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
        Hi and Welcome!

        I too would like to add my to the gang! Since you've already gotten great advice, I'll just leave it at a big welcome and glad you found us!!! Hope to see you around the boards!!!

        How do you eat an elephant? One bite at a time...

        Harry arrived 2/23/09!

        *IC 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.

        IC Diet Cheat Sheet:

        IC dx'd Nov 2004
        Lymphocytic Colitis dx'd July 2005
        Possible IBS
        Current IC Meds
        Vistaril 25mg in the evening
        Previous IC Meds taken:
        Cystoprotek - 2 caps 2x's a day
        Elmiron, 100mg 3x's a day
        Ditropan, 5 mg 3x's a day
        Wellbutrin 150mg 2x's a day for Anxiety/IBS
        Pepcid 40mg a day for GERD
        Zytrec for Nasal Allergies
        Align Probiotic daily for IBS


        • #5
          Thank you all for your warm welcome. I am currently taking 25 mg of Elavil. I will definitely ask for a lower dosage. It seems to help with the pain, but makes me zombie-like the entire next day. I do get GREAT sleep however, which is a relief! Thank you again for all of your well wishes!!


          • #6

            Glad you found us...
            The elavil helps alot if you can get used to it.. I started on 10mg and worked my way up..

            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.