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It's positive - mixed feelings of having IC

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  • It's positive - mixed feelings of having IC

    Hi all, well it seems I've moved off to the Newly Diagnosed board. (sigh)

    A quick intro - I've had bladder pain & stuff like that for well over 7 or 8yrs now. I'm 31 now. When it first started I went nuts with pain and pressure. It was awful! I thought I was going nuts. I saw a urologist who ran a lot of tests and treated me awful. He one day just handed me a pamplet about IC, gave me some Detrol & Urised pills then sent me on my way. I thought that was telling me I had IC. Pain went away, I had 2 more kids and then last year I was hit again full with awful pain thought there was no way in the world I could be going through this again. I saw yet another urologist who told me I had nothing in my records about having IC. I was over joyed, but the pain never went away.

    For the past year I've been back on Detrol and Urised. It has helped at times. I've been sick since December with upset stomachs (I am thinking I also have IBS), sinus infections and now I've been hit with the flu.

    Back in November my OB/GYN said she was sure I had IC. I was annoyed and didn't want to face. Just going to this IC Network website made my bladder hurt. I was in denial. Then 2wks ago my Uroligst (a new one who is wonderful) suggested doing a Potsium (sp?) test that would let me know pretty much if this was IC or not. I agreed to it and dreaded it.

    I had the test done Thursday. It was AWFUL! Two different nurses had trouble putting in the catheter. I can't tell you how many times they tried to jab it in. Finally the doctor came (my husband said was most likely more forceful) and he got it in. First time the nurse filled it with water. That bugged my bladder some. Then she put in the potasuium and that was so PAINFUL. It hurt so bad. Then she put in the rescue solustion. That helped a tad.

    My doctor put me on Elmiron. I am take it 3 times a day. Plus I am to keep up with the detrol and urised.

    I got mixed feelings about this. I am so glad it's not all in my head, yet scared. It's a pain taking pills 3 times a day. Waiting to not eat or waiting till after I eat. Is this my life now? I'm only 31.

    Also I still think for sure I have IBS. But well my husband seems sick of taking me to doctors so I am just dealing that by chugging Pepto and other upset stomach meds. I'm tired of being sick . . . .

    Ashley - wife of Michael for almost 13yrs, mom of 3, stay at home mom and homeschooling mom
    Ashley - wife of Michael for about 15yrs, mom of 3, stay at home mom and homeschooling mom

    Learned I had IC through a potassium sensitivity test on - 3/1/07

    My meds -

    Elmiron 2 times a day
    Marshmallow Root pills once a day
    Zyrtec - once a day

  • #2
    Hi Ashley,

    I hope you will have your husband take you to the doctor anyway. It may be rough but it's far more rough for you. You can't be a SAHM and homeschool and feel awful like this. I know I wanted to homeschool and then my husband got hurt and I got sick and it never worked out. I'm so glad you are able to, but you need to take care of yourself so you can take care of them properly.



    • #3
      I'm so sorry to hear what youre going through. Are you on the IC diet? I know when I first went on it, I got REALLY sick. I think stopping vitamin C etc. is what did it for me. I went to a nutritionist, and they really helped me out with keeping within the diet and staying as healthy as possible.

      Just a thought.


      • #4
        I know it is difficult and hard finding out that you have IC then having to deal with it. Then having IBS on top of it to. WHich is not uncommon with people who have IC. I am 35 and found out for sure I had it in 2001, but I tried for years to get uro's to test me for it and none of them would admit that I had it and flat out refused to test me for it.

        I would suggest like the others you start with the IC diet. For some IC'ers this alone helps their IC symptoms more than anything else. As far as the Elmiron is conerned, this can take anywhere from several months to up to a year for it to work. But keep an eye out on your tummy. It can mess some peoples stomaches up. Especially those that have stomache ulcers.

        Its hard just starting out, but I promise it will get easier to deal with. ALot of people that have IC have found the right combo of treatment that work for them and they go into remission and just dont come on here anymore. So there can be a postive outlook with IC. Just keep that in mind. It took me years to figure out that I rule my life and I refuse to give in to my disease. Hugs to you
        God grant me the serinity to withstand the days ahead!!!

        My myspace link...


        In Memory of My Father (Lawerence) 1/25/2007

        Interstim Sept 2001
        1st InterStim Removal May 2005
        2nd Interstim Implanted May 2005
        2nd InterStim Removed March 2007
        Hysterectomy 1999
        Tubes Tied 1997
        C-Section 1996

        Me and my kids

        Taylor (my daughter) Me and my daughter My son Cody and Taylor


        • #5

          I'm sorry you are feeling so bad. It's a very lonely disease that is often misdiagnosed leaving women (and men) to suffer for years. Just remember we're here for you whenever you want to talk or have any questions. We can't really give you specific medical advice, as most of us are not in a medical profession, but we can tell you of our experiences, and hopefully through that, you can find something useful to help you. You mentioned you were taking Elmiron, Urised, and some pain medications. Are you going to have weekly instillations at your Uro's office? I go to my doctor's office twice per week (and I do home instillations when needed) and have these wonderful bladder instillations which consist of Lidocaine, Heparin, Sodium Bicarbonate, and Distilled Water. I tried the DMSO instillations prior to this type of 'cocktail', but they were very painful. The current mixture I listed above is instilled into your bladder via catheter and it gives me instant relief. I liken it to pouring water on a fire. I call my nurse who administers the instillations 'My angel', because I don't know what I would be doing if I couldn't have my treatments. My nurse showed me how to cath myself and I do at least 2 instills on the weekend. I'm now able to go to the grocery store for a little while and even travel for a couple of hours because the instillations work so well. Please ask your Uro if he can begin giving you this mixture of medications into your bladder. There are many others on this site who have the same mixture and know the exact amounts of each liquid. I hope you find relief soon. Please write me back if you have any questions about my experiences and more about the treatments.


          -Bladder surgery to correct reflux-'68
          -Terribly painful periods, beg.@ 13 (most likely due to endometriosis, no dx then)
          -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
          -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
          -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
          PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
          -DX'd with IBS in 2000
          -Rhabdomyolysis in 2001 (has not returned)
          -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
          -DX'd with TMJ in 2000-wear splint
          -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
          -DX'd with Epilepsy -2000
          -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
          -DX'd with Fibromyalgia (2006)

          Medications:MS Contin-30mg@3xday,Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!


          • #6
            I know its such a hard thing to deal with. I too was in denial. Did not think it could happen to me. I did not even know this disease even existed. I went to my first urologist. The same practice 3 doctors treated me and they all said I did not have IC. I tried detrol and it did nothing but made me burn more. My 2nd Urologist was great. Confirmed I had IC. Even after he told me I was still in denial. I did not want to be sick nor did I want to do the IC diet. I loved coffee, soda and smoking. I took my kids and husband for granted as I had no energy and I felt so sorry for myself. I have been taking elmiron, elavil for 6 months now. I take nerontin and vicodin when needed. I feel much better now. I stay away from the trigger foods. The only problem with all these meds is I eat so much and gained 5 extra pounds. I did not want. My younger daughter asked if I was having another baby! (Nice). Once you found the combo of meds that work for you. Things will get better!