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My IC Story

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  • My IC Story

    My symptoms began just before my 30th birthday, just over 10 years ago. It began with non specific pelvic inflamatory problems and I ended up on antibiotics for nearly a year without any improvement to my pain or symptoms. I had incredible crippling pelvic pains and vulval pain. The doctors had no idea what was wrong and even referred me to a clinical psychologist as they thought I might be making it up or causing my discomfort somehow. It took another 9 months to have a laproscopy and cystoscopy which confirmed I had got problems which meant I would probably never have children but was relatively inconclusive about anything else. However, to me it proved that something was going on. That procedure was a small turning point in that it was my last bout of antibiotics for years. However, I still had pelvic pain and constant vulval pain. It felt like I had acid between my legs. During those years I cannot explain how much money I spent on doctors and quacks and became my own expert on vitamin and mineral supplements. IC was vaguely mentioned but I did not understand the significance. I gave up on doctors in the end and just thought I would be like this for the rest of my life. I even thought, perhaps I am causing all this somehow. Until, 5 years ago, when I started to have massive urgency issues and never had a positive uti, though I didn't really try to take control of my problems until three years ago, as by now I distrusted doctors as they used to say I was over emotional etc. In February this year I was diagnosed with IC officially about 7 or 8 months after my cystoscopy last year. It takes that long in the UK and my gyno put me on antibiotics again for three months so I had to beg to see a urologist. The uro put me on elmiron and that was fine. I feel lucky. However, a month ago I ended up in the Accident and Emergency unit at the hospital after eating three pistachio nuts. The A and E team did all the typical tests but didn't get the significance of the IC. I was in so much pain and I told them it felt like a cyst or ulcer. The just looked disbelieving and generally like I was making a fuss. It was hours before they gave me pain relief. Two weeks later, I had a scan which my uro had arranged for me from my appointment in February which I had two weeks ago. It showed my kidneys were fine but, it showed up something just where I had the massive pain in A and E. Today I had my three month appointment with my uro and he hadn't read my notes properly. He didn't reallise I had been in A and E and he had not read the scan results until I asked for them. However, once he did he said they found a mass (I think but it is all a blur) and he wants me to have an MRI in two weeks. He tinks it might be a cyst too. Lucklily I had read someones experience on this site or it would have been a closed MRI. I am so claustrophobic so he said he would get it done at a private clinic for me so I could have an open scan. Then to see him a week later. I am also going on an antispasmodic ( I can't read his writing to tell you what it is) and staying on Elmiron. I told him I am now so depressed but he advised me he was a surgeon and doesn't deal with that sort of thing. I have to see my own doctor for that. Sorry for the long, rambling story, which I know now, is all too familiar for IC sufferers. It started when I was 30 and now I am forty and I feel my relationship building and possible childbearing (through IVF) years are over. I feel cheated, almost like I have been in prison for ten years and I feel I have no more coping strategies left. I have lost two close friends to this illness, I have no significant relationship and I am not sure I will be able to have one and I am trying but I have no more happiness left. Also work is very difficult and it is affecting my career abilities. I don't want to sound too depressing because I am so glad to have found my diagnosis. And I am so grateful for this site and for everyone who bravely talks about their stories. It is so good to be able to say, yes that happened to me. That is the best medicine. You know, I really thought I was the only person to have these problems and now I know I am not. I am lucky, today I have very little pain and my biggest issue is urgency and I can only say I am sorry for all those who still have massive everyday pain. Even low level every day pain makes me down but you all all so positive. Well done. I will try to follow in your footsteps. Sorry for the long post.

  • #2
    Don't feel sorry for the long post--it's threraputic!!
    Your right--so many of us totally understand what you have and are going thru. I wish the best for you in your treatment.


    • #3
      I am sorry that you have been thru so much. I agree that sometimes talking about it helps more than anything. I am glad that you are here with us. I hope the new meds that your Dr. gave you will help.

      Hope you feel better soon!



      • #4
        Hey Ponytail -- You and I are just the same age, and I had nine years of trying and being told I was crazy, or a drug addict, before I got my diagnosis too. I completely understand what you're saying about feeling you've been robbed of this time in your life. You sound really depressed, I wish you could get an Rx for some anti-depressants. The British health care system sounds very complicated!

        Listen, feel free to PM me if you need an ear, anytime. I hope you get to feeling better soon.
        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


        • #5
          Thank you,although I am depressed I am still in a better place today thab I was before I was diagnosed. It is great to put a name to all the troubles! It is also amazing to find out you are not the only one and that your experiences are not unique, but other people have gone through them too!


          • #6
            TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
            My Helpful Hints for Home Instillation:

            Institute of Female Pelvic Medicine (J. Dell, My MD)
            Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
            I post to encourage and offer total support for rescue instillations.
            Find me on facebook: L. Clark Thomas


            • #7
              oh man ...i totally symapthize w/ you bc I also feel that same way..distrust in dr.'s (except my GP i have right now) and just like its a lost cause and dont know what to do also toke me years of test and being in and out of the hospital and dr.'s telling me i was crazy,a drug addict,std's, i guess i just want to say im sorry and I am here for you!!! hugs!

              Judge me and I'll prove you wrong!!



              • #8
                I felt the same way

                I got IC in 1992 at the age of 36. It took years to get diagnosed, family and many close friends came to believe I was "crazy". After I got diagnosed I spent years trying various meds, lost my 17 year job and went on disability. With elmiron and elavil I have now been in remission for 6 years and regained my life. I go thru the same emotions that you do. I feel that IC wasted years of my life and that starting over is no fun and not fair. One of the things that helps me is talking to other people that have IC and giving them hope, participating in studies at the U of MD that eventually will find a "cure" for IC (I believe) and thanking God that I did go in remission and finding this site. I hope you find something that relieves the pain.