No announcement yet.

My IC Story

  • Time
  • Show
Clear All
new posts

  • My IC Story

    I had frequency / urgency symptoms for over twenty years before the pain began. I really didn't mind getting up five times a night as long as it didn't hurt. I'd had alot worse things happen in my life so it was all relative.
    In 1992, I just began having symptoms similar to a bladder infection. My doctors of course treated me with antibiotics which as all of you know, didn't help. My GP referred me to a urologist who did cystoscopies galore which were extremely painful. He pretty much told me it was all in my head. He wouldn't give me any pain meds besides pyridium despite the fact I was fast becoming suicidal. He also put me on one antibiotic after another. Which just triggered mega yeast infections and made my symptoms worse.
    Luckily, I read an article about IC in Glamour magazine of all places! I knew this was what I had but neither DR. would believe me.In fact one said I read too many magazines! So I got the name of a Dr. at the Med Center at UNO who treated IC patients. After one talk with me, he said "You're right. You have IC" I wanted to kiss him, just for validating my own insight into my body. He did a hydrostention and treated me with Chlorpactin under general anesthesia.I was hemorrhagging all over my bladder. I had some ulcers.
    He prescribed hydrocdone which helped with the pain. It took a couple months but the pain gradually began to subside.He told me I may need the same TX again in 6 months. That scared the crap out of me as the cure was extremely painful for at least three months. At the time, three months of pain for three months of relief seemed worth it.
    I have tried many meds which over the years I've lost track of.
    I took Elmiron but it was so hard on my stomach I couldn't tolerate it.
    Elavil made me feel like I had Alzheimers! I once couldn't find my way home on that! As soon as I quit taking it, the symptoms of Alz. went away.
    For the last ten years, I have been pretty much symptom free. I get flareups from not eating acid free all the time but they subside as soon as I eat better. I usually take darvocet to get through.
    This last flareup this week was from taking a multivitamin. I amaze myself at how quickly I can forget and take such little things for granted and then I pay!
    I'm sure you all understand how old it gets eating so limited and then when I go without pain for a long time, I get sloppy with my eating and think I can eat like a normal person.
    Coming to this website helps me feel grateful and not alone. Support for IC sufferers has improved so much since I was first diagnosed.
    Thank you for being here and for the ICA. I can't tell you how grateful I am.
    Oh, I also have Irritable Bowel Disorder, Migraines, and possibly fibromyalgia though I have never gotten diagnosed for that.The symptoms come and go. Lately I've been having alot of joint inflammation. Don't know if that the beginning of arthritis or not.
    I'm 53.

  • #2
    to the ICN.

    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

    Where I can be found most days.

    Link to the ICN Patient Handbook:

    Link to the IC Diet:

    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.


    • #3
      Wow, the beginning of your story is so similar to mine. I had frequency/urgency for at least fifteen years before the pain started, and that is why I didn't connect the two. I just kept telling every doctor that I had pelvic pain; for nine years, not one doctor (including the urologist) asked me anything about urinary symptoms. I was so grateful when I met the doctor who diagnosed me, I cried in his office.

      Thank you for your post. It's such a help when people who are doing well come to this site and let us know. It gives hope to those of us who are still struggling with symptoms, and I think it also gives the newbies a more balanced view of people living with IC.

      I hope you continue well.
      Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
      Wishing you happiness and good health, and all the best out of life.

      Peace, Carolyn

      Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

      On the Beach with IC


      • #4
        Thanks Carolyn!
        I am glad my story gives people hope. I remember back when I was first diagnosed and I so wanted to hear that it could get better! It felt hopeless.
        I am very very grateful for my periods of few symptoms and pain.
        Like I said, there are so many more answers and meds than there were 15 years ago!!!! That is wonderful!!!
        There is hope!


        • #5
          To the IC family.
          Hugs Sandra
          "Never Give Up."

          To view pictures of my creative interests and Maine Coon kittens click here:

          My Photobucket Link:


          • #6
            Thanks for the welcomes!


            • #7
              Your story is so like mine, I had told maybe a total of 7 doctors of my pelvic pain, painful intercourse and frequent bathroom stops, I to thought it was in my head, I had many laproscopies for endo, always pain periods, in college, I would drink nyquil so could sleep, finally a new gp said he knew what was wrong, and quickly set me up with a URO, my first meeting, she did pelvic, which sent me through the roof and took urine sample, she said from the check list, I am 99% sure you have IC and schedule a potassium sentative test in office, when I got home she was calling and said when I looked at your urine there is such a large amount of blood I need to do a cysto/hydro under anthesia, that was scheduled within two weeks, I was freeking because my grandfather died of kidney cancer, so she did hydro and sure enough, IC, total scar tissue and she said my bladder looked like a 70 year old, I was 40. I cried, started elimiron but could not tolerate it, hydroxine and elavil, helped some, but then the pain became so bad, I needed pain meds, and this doctor would not prescribe any so I got a referral from my ex father in law to a group and I called them, and they had a uro that dealt with IC went to see her, she cried because she couldn't believe I was left in so much pain without in any meds. I have had two more hydro's they help with freq. not pain, but she is willing to write lortab each month, limited amount and it is getting so bad, that tomorrow I am getting my records sent to a pain specialist, that is very much interested in learning about ic pain, so I will be his first, but we have emailed each other, and he is an hour away, but he is offering his help. He is an anthesiologist specializing in pain care. I want my life back, and if I have to be on pain meds to have it, so be it. The support I get here is soooo important to me, because my family and friends really don't understand, and I do not want to complain to them all the time, but I know here I can complain all I want and not be judged.

              Long story short welcome.


              • #8
                Little Myrn,
                I am so sorry you are having so much pain. I remember looking for a pain specialist back when they were very rare. Thank God you found one.
                Good luck and let us know of your experience.
                I'm curious. Have you tried CystaQ or protek?