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    I am a 17 year old female.
    About 4 or 5 weeks ago I started have symptoms of a bladder infection/UTI. Urine specimens came back negative. It burned to pee - extremely badly. I then had another culture, and then another, and another! All came back negative. Had X-rays, ultrasound, and ct scan, also multiple vaginal exams to rule out that kind of infection. I also had a cystoscopy. I was finally just diagnosed with IC. The problem is, the only symptom I have is the burning to pee. Right now I am on elmiron, atarax, uribel, metformin, belziva(ovarian cysts), pail, humaog insulin and lantus insulin.

    I had an instillation today and it did nothing but make my urethra hurt more. I just need some answers, I'm so confused. I am a juvenile diabetic and have two fractures in my back. I am supposed to go on my dream trip to Disney on Tuesday and I don't even want to go anymore. It's my senior trip. I am hurting so bad. Sorryto lay it all on you

  • #2
    Oh My!! My thoughts and prayers are with you. You're so young to have all those illnesses. I had my first instill on Monday and felt the same way as you. I had the heparin/solu-medrol/sodium bicarb instill. I found out my urethra was inflamed too (after the fact ). I was placed on Urelle for spasms and Doxycycline 100mg twice a day for the urethra problem. The culture came back contaminated so they aren't sure if there's an infection on top of the IC. I had a different NP give the second instillation on Friday. She didn't go all the way up the urethra and used a lot of jelly and lidocaine. And she doesn't empty the bladder out unless your at full capacity. I didn't have to wait an hour just 20 minutes this time. It was the difference between night and day!! It didn't hurt much and eventually I was peeing every 2 hrs instead of every 15-20 minutes!! No spasms either. I have been stricter with my gluten diet and doing the IC diet also. I was told it would take 3 or 4 instills before I would notice any improvement. I was told also I shouldn't have had the horrible pain and spasm with the first instill either. I talk with your doctor about the problems you are having and about the instill too. Maybe they can make an adjustment or check if they are missing some other problem. I wish you the best of luck. You should be enjoying your final year of school!!


    • #3
      I am so sorry that you are dealing with this right now. It isn't fair at all. Seems like you already have a lot on your plate. Please give the meds time to work and also look at the ic diet to help calm your urethra. You can find the ic diet through the Patient link that I have in my signature.

      Is you Disney Trip for Senior night? My daughter did that with her high school about 3 years ago. She had so much fun, I would hate for you to miss that. They stayed in the park until 4 am and had so many concerts to see and so much fun.

      Maybe you can ask your Dr to see if lidocaine gel will help your urethra in the short term and take some with you, it does help some people with urethral pain. Also, don't drink any soft drinks, try and drink only water. I know that isn't the best thing to drink but if you are diabetic you might be drinking diet soft drinks and some of the artificial sweeteners can cause problems for ICer's.

      I sincerely hope you do on your trip and have a wonderful time. Please let us know how it turns out for you! Don't worry one bit about coming here with your fears and worries, that is why we are all here for each other.

      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
        Sending you understanding are so young to have to go through this. I see you probably have already gone to Disney World by did you fare? As destinations go, it is a fairly IC friendly place....

        Julie Beyer, MA, RDN
        IC Dietitian, Patient Advocate, Speaker, & Author

        Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

        Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

        You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

        ........ ........

        Other IC Diet Resources:

        IC Diet Webinar
        IC Diet Website
        For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
        Free IC Diet Booklet: What Can I Eat?
        Confident Choices IC Diet Blog
        IC Diet Newsletter

        *Let's Connect!*


        • #5
          So sorry. I don't have any advice or wonderful words to say. I wish I had a magic wane. I'd wave it...for all of us.

          I'm hurting so much as well.
          Widowed at 44...and now IC!