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    Hi, I was diagnosed with IC a year ago. Since then my urologist tried about 6 different medicines for overactive bladder and nothing helped. My problem is not how many times I go but the pain I get with the urgency. The urgency comes on without warning and the pain that goes along with it lasts about 2 minutes. I can't move for those 2 minutes. When the pain passes I can get up and walk to the bathroom and go very little. During the night I go about 4 times and each time I have to sit on the edge of the bed until the pain passes before I can walk to the bathroom. My doctor scheduled me to go into the hospital for Botox on 10/13 and today I went to him for pre-op. After reading so much info on this forum I decided I wanted to put off the Botox and try Elmiron. I noticed so many on it. He agreed that before being put to sleep for the Botox that we should try the Elmiron. I'm hoping I have good results from it. Thanks for all the information out there. I'm sorry so many people suffer with this but on the other hand, its nice to know that I have company, that I'm not the only one. Thanks for being there.

  • #2
    Hi, Arlene and although it's always sad to hear someone else has IC. There are so many different treatments for IC and I'm glad you're exploring to find what might be best for you. Hope your pain subsides soon.

    I have excruciating pain when my urge hits so suddenly but mine doesn't go away until I can actually find a bathroom and "go"...sometimes if only a very little. This may go on for an hour or two hitting every few was an exceptionally painful morning because I had to leave the house to take my grandson to school and had to even stop at a park and grocery store to go on the way home (hardly able to walk) on my 4 mile drive. Now that I'm near the bathroom, it's under control because I go as soon as I feel any urge. I still haven't found out what the cause is but empathize with your pain.

    Wish I had an answer for you, too! Good luck with the Elmiron.

    Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found can you...keep the hope.

    11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
    8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
    8/2010 Surg gallbladder
    TREATMENTS (updated 4/15)
    IC Diet since 8/2009 (Able to vary 4/15)
    Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
    Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
    Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
    *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
    Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
    PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret


    • #3
      Thank You for your reply

      Thank you Briza and Nanawaggs for your replies. My doctor didn't tell me that Elmiron takes so long to work. My doctor is very quick. He's almost going out before he all the way into the room. I have to have my questions written down on paper otherwise he's gone before I can ask him anything. I did read the IC diet and it's very much how I eat. I love iced tea but I might as well drink acid. It really brings up the pain. Coffee and tomato sauce are also triggers. Nanawaggs I had to smile when you talked about picking up your grandson. I had the same thing picking up my grand-daughter. Had to stop at a fast food restaurant and gocery store. I often think about getting my grand-daughter out of diapers and grandma going into them. I always have an extra in my purse and one under the car seat. This is a rotten condition we're in. I pray for a cure. Meanwhile I will go to the drug store and look for things you mentioned Briza. Thank you for being there. Your a comfort.


      • #4
        Thank you Bri

        I should have checked in here months ago. You have given me some good information. Tomorrow I will pick up the Pyridium. I will also follow the diet. You mentioned "IC Belly" on the bottom of your page. When my tummy became so bloated I thought Oh my gosh now I have something else wrong. All of a sudden I gained 12 pounds and I looked pregnant. I mentioned my concerns to my primary care doc and he smiled and said I look good with the weight. My gastro doc (I have Crohns & in remission) said the same thing. I never mentioned it to my urologist (and he's never in the room long enough to notice) because I never thought it was connected with my bladder. Learn something new every day. I had to buy new slacks to fit around my fat waist. I look in the mirror and see this bulge. I've always been on the thin side so to me it's so noticable. Have you been able to get rid of the belly? You also mention VV and PFD. Are they connected to IC. All these letters-I feel like I'm talking in code. Sorry I dumpted on you about the ICBelly, but it sure is good to have someone out there that is familiar with all this. Thank You Bri


        • #5
          Thanks again..I read that link you sent and printed it out. I'll take it to my next appointment. Guess I'll stop worrying about the belly knowing that when I get more control of the IC, the belly will get better too. You've given me a lot of hope and I know I'll sleep better tonight. Thank you so much for all your time and information. Arlene


          • #6
            Boy can I sympathize with you about these doctors that take our money and give you 1 second of their time. Its a darn disgrace how we are treated. I wish that an allotment of time must be given to a patient for each visit. Its terrible how we are treated when we are in pain! I realize we don't have cancer but we do have real pain probably equal to cancer pain and we are dismissed. Prayers for all of us from me!


            • #7

              I found the best way to keep my doctor in the room is to go in with my list of questions on a piece of paper. I put the paper on my lap and check off the questions as he answers them. If he didn't see the paper he would be out the door before I got to my second question. My doc schedules a patient every ten minutes and sometimes they double book. It's awful when you have to learn how to manage your doctor.


              • #8
                thanks for that info. I am making a list and taking it with me. What type of anxiety reduction methods did you learn. Is there a book to read? I feel the anxiety of not being able to stay with a medication(elavil) because of heart palps really upset me, because it really reduced my bladder spasms and frequency. Is so crazy and all the doctor tells me is I need to get diagnosed under anesthisia. I don't understand why they cannot treat you unless they do that test? I am not looking to suffer anymore needlessly! hope you have a peaceful day and again thanks.