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is it IC?

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  • is it IC?

    I have had burning since I was a toddler I’m 17 now and have found that sex can make it worse, it was never bothersome till I was about 12 or 13 and then it started to become crippling I do have pressure and unable to hold it for a long time especially if I’m sitting down but the burning is what gets me its the worst part I’m afraid to pee because I think it will burn and it always does, I’ve been from doc to doc I’ve seen urologists, nephrologists even gynos and everyone just shrugs their shoulders and sends me home with vicodine and pyridium, my pediatrician even suggested to my mother that I’m faking it because they can never find an infection, I keep telling them it’s not an infection and my mother too but now I’ve had to drop out of school because of pain pyridium is slowly losing effect on me and everyday becomes harder, I’ve been to the hospital for caths and dehydration because I’m afraid to drink anything but sprite cuz I know I’ll have to pee if I drink, sprite seems to help, I can’t live my life like this any longer what should I do what could this be my uro says I’m too young for IC and my ped thinks I’m faking or crazy..... I’m not crazy I know what I’m feeling and it is 100% real I go to a doctor in Tampa, at all children’s hospital, I think I’m too old for a pediatric uro but no one will accept me because I’m 17 and don’t have insurance and the only one who believes me is my nephro but she can’t do much but prescribe me the pyridium, I’m just to the point where I’m afraid to do anything because I know I’m going to hurt, I avoid long rides, I avoid leaving the house... I need to be where I can curl up in a ball on the shower floor at all times and it’s not a life, how can I ever work, how will I support myself how can I bare being pregnant when that time comes, my bf is very understanding, I live with him and by live with him mean I live in his bathroom or shower his job gives him insurance and we might get married early because of that, no insurance companies will except me and I mean NONE,i haven’t been to a doc in about a year because when my dad died in march or 2010 my mom applied for Medicare, so Medicare canceled my healthy kids and didn’t accept me cuz my mom made like 200 more than the limit, and healthy kids wouldn’t accept cuz of previous medical history, I just want to be normal I don’t want to worry about going out or taking all this medicine. And my grandmother has IC would that increase my possibility.... does it sound like IC even though my main complaint is burning and blood in the urine?

  • #2
    the health care system in usa is a cruel injustice everyone should be treated rich or poor. somehow you and your boyfriend need to find help with your health. you might want to try to find on the net if there are any type of organizations that can help. you are under 18 so maybe social services can help you.

    as far as i know i have not heard that this is heriditary, but it does sound like you have ic. download the ic diet on this forum and stick with the diet. try to see a uro asap you need to be on a trreatment plan if you do indeed have ic.

    being under age you should be intitled to some kind of medical help.
    i wish you well and pray you get help soon.

    keep in touch and let us know how things are going. ask and we will try to give answers as best as possible you are not alone.
    <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>


    • #3
      IC can run in families, so I would say it is very possible what you are experiencing is IC. The healthcare reform laws have already been passed for children (underage) to not be penalized for pre-existing conditions, so if insurance is rejecting you based on that then they are breaking the law. Do either of your parent's have insurance. You can be put on their policy (even if you don't live with them) until you are 26. If you are considered an adult with no income you should qualify for medicaid. Keep checking all of your options and do as much research as you can.
      Good luck, Linda is right, try and follow the ic diet and I would suggest you give up the Sprite and switch to water,I know it sounds crazy to drink a lot of water but it really does help.
      Link to the patient information, everything from What is IC? to Disability

      American Urological Association Clinical Guideline
      Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


      • #4
        I can't say for sure you have got IC. Of course, I do know you are not too young to get it. Besides, we have had other juveniles on here before. None of us enjoy having IC, or any chronic, but it is still good to be properly diagnosed. Yep! I happen to be a dude, but I was still diagnosed with IC back in 1997. By the way, we are all different in age, gender,in my case, symptoms, and medications. OK. I believe you are not faking and/or crazy. That will be all.