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My IC story!

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  • My IC story!

    Hi everyone!
    My name is Kayla, i'm 18 and I live in sunny England

    I have just recently been 'possibly' diagnosed with ic after a major battle between myself and various GP's/Urologists. As a child i had to endure many urinary tract infections that made me vomit and occasionally wound me up in hospital overnight. I was given a kidney scan age 10 and thank goodness they found no lasting damage! It seemed to calm down after that however i never forgot the pain of a water infection!
    Last November i started to get the pain again however it was not just when i urinated but i also had severe stomach pain. I took a sample to the doctors and saw my GP (after hours of ringing the phone they disconnect because the receptionists are so ignorant and can't be bothered to care). He dipped my water and found 'not a thing'. He told me to go away with some antibiotics just in case but told me the pain was due to my egg passing down my fallopian tube (i do get that pain but it most certainly wasn't that!).

    i returned to him every few days as the pain got increasingly worse however he still dismissed me, even suggesting the pain was in my head as i was 'afraid' and 'paranoid' of catching another UTI! the cheek!
    a week later a lovely female doctor at the surgery called me to go and have a chat with her about my sample. She told me that a great deal of blood had been found and it was a wonder the other GP hadn't picked this up

    i then had to send off many more samples for testing (i'm quite the expert at peeing into the little bottle now! ) and the blood remained constantly high. She decided it would be best for me to visit a urologist at the hospital which totally terrified me but i wanted it sorting! the urologist turned out to be the same guy who treated my dad for prostate trouble. I heard many amazing reports about how lovely he was so this put me at ease. However when I eventually got to see him he was incredibly rude! He accused me of having an STI, sleeping around and being pregnant and afraid to tell my parents! it was only when he did the internal that he realised i was actually a virgin and not at all pregnant! He then started to take me more seriously and arranged for a trip to day surgery for a cystoscopy with hydro-distention under general anesthetic.

    Needless to say I was horrified to go but couldn't wait to be properly diagnosed! months and months passed by with no word of when my appointment was and I even had to go back to the GP to ask for help. She phoned them and couldn't get an answer. Eventually she phoned me back and they gave me my pre-op and admission dates which were a month away. apparently my letter had been lost and not sent. yeah right
    I had my cystoscopy and I was under a lot longer than anyone expected. when i came round he came to see me to see how I was doing (I must mention that he, the anesthetist and the staff were wonderful with me ) and he told me no wonder i had been in pain as my bladder was very small and incredibly inflamed.

    Ive just been back for my check-up and he believes it to be ic however i need to do some early morning water samples to rule out the tiny possibility i have TB in my bladder! didn't know you could get that but never mind!

    The battle continues! i'm on no medication, pretty much in constant pain and about take my a-levels but im DETERMINED ic w'ill not beat me!

    thanks for listening to me whinge guys, my mam and dad are sick of it now!
    Kayla x

    'Hope is a good thing, maybe the best of things, and no good thing ever dies.'

  • #2
    Welcome to the ICN Kayla, -but so sorry you've had the need to join us! Wow, you've been through a lot on your way to getting a diagnosis! I'd had the 'pain is in your head' suggested to me too and it still makes me cringe to this day. Thank goodness for the female doctor who realized the blood in your sample was an important clue that was being ignored and that she took the initiative to call you!

    Have you found the IC diet yet? I know you'd said you've not started any kind of meds yet, but the diet is something you can try right now. It may really help.

    Hope you find relief soon!
    "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."


    • #3
      Hi Vicki,

      I'm sorry to hear you had similar treatment to me! It really is awful and you do actually start to wonder whether it is all in your head!
      Thank you so much for suggesting the diet I will definitely look into it and give it a try!

      Thanks for all your help and I really hope you are well!
      Kayla x

      'Hope is a good thing, maybe the best of things, and no good thing ever dies.'


      • #4
        Originally posted by kayla90210 View Post
        It really is awful and you do actually start to wonder whether it is all in your head!
        I know! And that's a heck of a thing when they bring you to the point where you're questioning your own sanity! Sheesh!
        "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."


        • #5

          I'd like to thank you for your help discovering the diet as some of the things really have helped me a lot! I'm keeping well away from fruit juice and caffeine and so far it seems to be giving me some light relief!


          'Hope is a good thing, maybe the best of things, and no good thing ever dies.'


          • #6

            Mine started in October....had about 4 kidney infections ended up at hospital getting fluids andmedicine....this starts the hell journey. I was so weak and lost down to 134 pounds. Had light down throat...twice...cystoscopy with hydro. It really was a miracle. The symptoms have come back bad. My uro that did surgery sent me back to family Dr. My family Dr said to go to uro that they could not give me pain medicine or help me. I am in the middle of...guess who might treat my ic....I am so distraught to be treated this way. I am looking for help.


            • #7
              You seem to have such a good attitude!! And that will be what gets you better! IC wont beat you if you have an optomistic outlook! DO the diet, it helps, but you need to work on it for awhile, it might not help immediatley. Also do as much research as you can stand. I tell my doctor about IC now not the other way around, which is sad, but unfortunatley IC is a VERY SMALLpart of what they learn in school, and often its not even touched upon. My Dr said `Oh yeah!` I remember learning that, I think`... UGH... lol SO be your own advocate. Hopefully you will get a good doc that will help you out with meds. Also, don`t read all the horror stories, they will just make you feel worse. Truth is that there are better days to come

              Jenn xoxoxox
              28 yrs old,

              I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

              What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

              Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!

              Me in my graduation gown!


              • #8
                Thank you for your kind words. I just need to find a Dr that will help me...just not sure how.


                • #9
                  Tracy Madden - Keep the faith

                  I read your post and wanted to cry. The frustration of wanting/needing help and not being able to find someone willing is something that I have experienced. Continue your search for compassionate care. You are deserving of all the help that is available.

                  Perhaps you can reach out to others in your city/state for a doctor recommendation. This site is full of wisdom and experience. I just know that I know Light will shine and you will find your path of recovery.

                  Thanks for the taking the time to share inspite of your present conditions. Have the best day you possibly can. Keep the faith.


                  • #10
                    Thank you so much. It is so frustrating