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  • My story

    well i guess that talking about it makes everyone feel here it goes. I've had IC ever since i can remember i just turned 18 years old.But thedoctor didnt diagnose it unill last Janurary. I used to have problems with IC not to often then last summer it started really bothering me.I kept going to the doctors and they kept saying it was a blatter infection.They just kept giving me different anti-bioticssaying this one should work...but it never did. I even had one doctor say it was clhamidia...needless to say it wasn't. Finally after months of changing anti-b's, my doctor finally did a cystocopy he showed me the T.V. and it looked like i had chicken pox on the inside of my bladder, there was so many pin point bleeding ulcers. My doctor said it was the worst case of IC he hadc ever seen and got me started on ELmiron right away. I kept having pain and kept being put on countless meds. I remember my senior prom i had a bad attack and with my hair all done up and make up running down my face i sat in the urgent care. They kept asking me to give a urine sample but i wouldn't do t because the pain was to unbearable. Finally they put me on so many pain meds i could finally go to my prom but i hardly remember half the night because i was so drugged up. But i guess I was lucky to be able to go. After that my parents made me an appointment at the Barnes Center in St. Louis. They priscribed me physical therapy. I started going and we started doing muscle relaxation techniques, she also got me started on the T.E.N.S machine. But i was still having tons of pain...the night of my graduation i was at our project graduation(where graduates play games to earn money) and i had to call my parents to come pick me up. Then a few weeks later i started feeling good. Hardly had any pain at all and i was so happy i thought i was going into remission even my regular doctor said i wouldn't have to see him untill July. But then one night it started again except this time even worse. Suddenly along with the pain i had symptoms i never had before like burning when i urinate and frequency to pee even when i didnt have to go that much. I missed a lot of work and i missed my birthday. My friends tried taking me out but as soon as we got to the place i told them i had to go home, so they attended my birthday party without me. No one can really understand IC. I definently feel like my job doesn't and my friends rarely ask me to hang out anymore because i always have to ditch out on them. MY biggest worry is college. I start in the fall and being away from home and my doctor withthis diesease really scares me. I'm going to get a rescue instill next week. My mom also ordered a new pill with aloe in it, i guess were willing to try anything at this point. But i hope everything gets better for all of us, because if any of you even have the mildest case of IC i still feel sorry for you cuz i know how bad it can hurt and how much it can make you miss out on your life.

  • #2
    Hello and Thanks for sharing your story..
    I bet it has been very difficult having to deal with IC being a teenager.. I have always had frequency and burning bit no real pain with IC until after my hydro was done..I hope the new meds you will be getting will help you anything is worth a try.. Good luck and God bless

    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
      Im so sorry to hear you are going thru so much. It took me about a year to figure out all my pain triggers. Hopefully you will find relief soon!
      Meds: Percocet PRN; Pyridium PRN. First symptoms Dec 2005. Diagnosed in March 2006.

      I am the proud mom of a two year old boy! I was lucky enough to be in remission my entire pregnancy. If you have any questions regarding my pregancy, delivery, breastfeeding, or pumping, feel free to contact me!

      Im on Facebook! Just tell me you are from the ICN. Look me up under Kim Wayne.

      I love working as a CNA in a nursing home. Started school in August part time. Going for my LPN!!!!


      • #4
        Oh I really hope you feel better before you start college. My IC started during my last semester of undergrad and that semester was hell. I only got pain with my periods or running, but the frequency/urge to urinate constantly was torture. My professors worked with me and I got through it and graduated (Thank God!). But I now start a masters program in 3 weeks, and that scares me. I really know how you feel. I do have anxiety too, but I'm doing everything I can. I am 2 hours away from my doctors, so I can relate to that anxiety.

        I just hope you feel better, and fast!
        [SIZE="1"][B]Be well, Alyssa :hi:[/B]



        • #5
          I am so sorry to hear you were feeling so good and then went to worse. Hopefully what you are taking now will help you to get better again, I hope so.

          Sending hugs, Trishann


          • #6

            Hugs, I'm sorry you have IC. I know you are nervous starting college. I got IC when I was 19 and in my second semester. I remember getting up and leaving one chemistry class about 10 times (in one hour) to go pee. I was embarrassed and wondered what people would think. I just finished my master's in December and this time around I just decided I wasn't going to care what other people thought. I told my professor that I "had bladder problems" and warned them not to be surprised if I got up and left over and over. On bad days I just got up as often as I needed to, even if that was every ten minutes, lol. Thankfully, those days were rare. I wish you the best.
            Lee Ann
            Current Rx Meds:
            Atarax, Ditropan, Elmiron
            Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
            Hooray for babies!
            Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
            Didn't work for me:
            Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
            IC (Mod-Severe) since 1996

            UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).

            My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...


            • #7
              Like the others I'm also so sorry you've been diagnosed with IC. I can't imagine trying to go to school and dealing with this disease. I feel fortunate I'm able to be a stay at home mom. Not that that's always easy. I noticed you said your IC got worse in the summer--mine did too. I went thru the whole summer on antibiotics--in Aug '04 I told my Dr that this isn't right and I wanted to see a Uro. Sept. '04 I was diagnosed. I was wondering if anyone else has more trouble in the summer with IC?? Maybe it's from not drinking enough water??