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I refuse to believe it.

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  • I refuse to believe it.

    I have been suffering from what I thought were UTI's for over a year. After multiple doctor visits and even a visit to the ER I finally got a referral to a urologist. All he did was flick a muscle during a pelvic exam. I jumped off the exam table and the first words out of his mouth were " Interstitial Cystitis". I told him, " That's not possible. I've researched IC, it's a diagnosis of exclusion, you haven't excluded anything".

    At this time, I was furious. I thought, how can this doctor seriously diagnose me with a long term chronic condition at 17 years old without looking any further into it? He prescribed me a cocktail of medicines, told me to stop drinking juice, soda, and gave me an IC diet flier to take home. That was it.

    I immediately hit the books. This was not going to happen to me.

    Currently, I am waiting to get into see a urologist who is apparently very familiar and skilled with the IC condition. I have been passed on from urologist to urologist. It's either, " This case is too severe for your age, I think you would do better with this doctor." or " There's nothing I can do for you other than renew your medication when you need it, unfortunately this is just something you have to deal with."

    I WILL NOT and CANNOT except this. I want more tests. I am now 18 and I still feel like I'm living without a diagnosis whether they say I have IC or not. I want things excluded. I've had multiple ultrasounds and such but I want a cycstoscopy. My urologist told me that he refuses to test for bladder cancer because I'm too young. He seems to think it's impossible. It may be improbable but definitely not impossible! He told me if I was 50, he'd definitely do a cystoscopy because of my symptoms! How is that moral?

    I may sound ridiculous, but how can i diagnosis of exclusion be made with out any exclusion? I'm sick. I'm pale, I feel faint every time I stand, I'm on over 15 medications and I'm not getting any better. I don't feel ANY better. I feel as though I'm going nuts. I told them, run the test - if it's not cancer, I'll believe it's IC. Now I'm seeing a urologist, a gastrointestinal ( I have now been diagnosed with IBS as well) and even a psychiatrist because my primary care doctor thinks I exaggerate my symptoms. Certainly not! Does she have my bladder? Does she feel shooting pains, even while she's on a number of pain killers? Does she pee 100 times a day, have urine retention, leakage, and sometimes can't make a bowel movement for a week?! I think not.

    I need someone to talk to who understands. I need someone who believes me. Please someone, write back. I'm tired of everyone giving me this look, a look saying " you're crazy"

  • #2
    Feel Bad For You

    You poor thing! You do seem too young to have such a severe case, there are others here around your age that might be able to comfort you some.
    I am really surprised your doc didn't scope you. Call every uro in your area and ask for one, it's not a complicated proceedure, I'm sure someone will do it.
    Also, would you consider a naturopath? They are more likely to help find a solution instead a bunch of band aides. In the meantime, try to stick to your diet as best you can, it really will help ease the symptoms.
    Hang in there kiddo and best of luck.



    • #3
      Your story sounds similar to mine (Well atleast the diagnosed part) I told my Uro about the symptoms and he said IC at first I was happy thinking that the uti feeling wasnt all in my head and that I was finally going to get relief from a medication or procedure. He started piling on the meds for me to try and told me to join the IC network. To me I just felt so doomed my Uro is not very experienced with IC at all niether he nor my mom take me seriously.

      I am waiting to be seen my a gastro also and my Uro also thinks I exaggerate my pains even when I handed him a sample of Urine that was mostly all blood. Im a junior in HS or I should say was I couldnt go anymore because of teachers getting upset about me using the bathroom I missed tons of school because I always felt horrible and no one believed me. Definitely see the psychiatrist I have a psychiatrist a therapist and a rehab counselor and it really helps especially when no one around you seems to get it.
      Effexor -50 mg
      Cipro -500 mg
      Elmiron -100 mg
      Tramadol -50 mg
      Vicodin-500 mg
      Zofran -8 mg
      Pepcid -20 mg
      Omeprazole -40 mg
      Prelief/IC diet
      Ditropan -5 mg
      Birth Control pills for Ovarian Cysts

      First Cysto/Hydro W/ DSMO 1-28-2011

      Yay!!!! Im finally 17 :woohoo:


      • #4
        to the IC Network.

        Some doctors are willing to make an IC diagnosis based on symptoms. A cystoscopy done in the doctor's office will not usually diagnose it, but can help rule out other possible problems. There is a test done in the doctor's office that some doctors use to make a diagnosis --- I'm sure you've read about the potassium sensitivity test. You might want to specifically request it.

        It does sound like IC is a distinct possibility for you.

        Warm hugs,
        Stay safe

        Elmiron Eye Disease Information Center -
        Elmiron Eye Disease Fact Sheet (Downloadable) -

        Have you checked the ICN Shop?
        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

        Patient Help:


        Diet list:

        AUA Guidelines:

        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

        Anyone who says something is foolproof hasn't met a determined fool


        • #5
          I'm guessing the "muscle" he flicked was not a muscle at all but most likely your bladder. Most everyone with IC will come off the table when a Dr touches their bladder. That is a pretty good sign that it is IC. I don't know if bladder cancer would hurt, you could try looking it up to ease your mind. A lot of Dr's do diagnose based on symptoms, it's really not that unusual. Like Donna said a cystoscopy without anesthesia and distention isn't going to show IC. He probably doesn't feel that it is necessary to put you under anesthesia.

          Believe it or not, you are actually fortunate to have a Dr give you a diagnosis without having to fight for it. I saw a uro that didn't seem to believe in IC, even though there was a book about it in his office. Many IC patients go years without a diagnosis and treatment. I would suggest doing some "testing" of your own with foods. If you find certain food cause you trouble, you can pretty much surmise that you have IC.

          I know it has to be awful to discover at your age you have IC. Many of us realize now that we also had it young but our Dr's didn't know what was going on. I had several un-necessary surgeries trying to find the cause of my lower pelvic pressure and pain. Hopefully with treatment you will get better and be able to live a pain free life.

          I wish you the best of luck. I know you are upset but try to keep from getting too stressed, if you do have IC, stress is really bad for you.

          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


          • #6
            I will tell you that bladder cancer is usually not painful. Research it, Google it. Something else is going on and you sound determined to get to the bottom of it, so GO GIRL. Fight for it. Just because one doc poo-poos you, don't be discouraged. And if it turns out to truly be IC, do not despair. There are a multitude of treatments and options, and you will find the right one with the right doc. In the meantime, try the diet to see if it helps a little. It takes some time, but it definitely does help. Good luck to you. Hang in there. Jill, wife of Bob


            • #7
              I feel your pain. I'm only 22 and my life was going so well up until a few weeks ago. Besides having a terminally ill mother, I finally met the love of my life and future husband and was looking forward to a very bright future. Shortly after new years I started feeling like I was getting a UTI so I got tested several times and they kept finding white blood cells and small amounts of bacteria but after 5 different antibiotics failed to give me any improvement I knew something else was going on. I finally went to a doctor I trust and was told it's probably IC. I'm still waiting to get into the urologist for a definite diagnosis but I'm sure that's what it is. I understand your frustration and everything. I've been struggling with bad depression since all this started but I'm determined to stay positive. Yes, I agree, we're too young for this.. but we can't let it rule our lives. I have to keep telling myself that I have many years to live, an amazing guy to marry, kids to have, and a family to be there for. Not to mention going to college to become a Vet Tech. I don't want to let this disorder stop me from living the life I want to live. I realize I'll have to make some changes (diet, stress out less, etc) but my life can still be mostly the way I always wanted it to be. Stay strong!

              P.S.- to *too_young* if it makes you feel any better, I had to stop attending regular high school and do independent study classes to graduate after my sophomore year. It was because of anxiety/panic problems and not bladder issues but I can still relate. So just know that you're not alone and there are good alternatives (i.e. I took a lot of online college classes).


              • #8

                A cystoscopy with hydrodistention did give me a diagnosis! The urogynecologist (which I recommend over just a urologist) said my bladder was small inside-which is common when one has cracks in the shrinks. Then when it was blown up with fluid you get pictures of the cracks around the bladder. I do recommend this procedure. I am not aware of any other treatment that shows this kind of result but it was a sure diagnosis for me. I have pictures showing it.

                It sounds like you have had a horrible steak of doctors which a lot of us go through. I would check out a woman's center that specializes in pelvic pain. They seem more gentle with you and give you more support.

                I do think the therapist is a good idea as if you have this disease it is horrible maddening of all the things you have to give up in life...foods you like, outtings you used to be able to do, workouts you may have injoyed, relationships with people who just don't understand the condition, and the constant pain you are in....not to mention a place you can just vent and have that individual attention. A lot of us, including myself need to that extra help if anything to help cope with the stress of it all. You need to learn to accept yourself even when your body is hurting. For me it was all to easy to resent my body...hate my body for all that I needed to give up and for all the pain I felt.

                As for other things to try I recommend relaxation techniques to help control the anger felt (which adds to the pain of the disease). If you are losing sleep, depressed, angry, and out of shape, restorative yoga is good because it incorporates meditation, gentle stretches, centering, and guided imagery. There is also Tai Chi which has helped me...slow movements. I needed to do inner work as to help control my emotions just as much as being mindful of what I put into my body such as medications and diet.

                Another thing I would suggest is to get rid of as many medications as possible. Natural is better. The more synthetic drugs to an already toxic acidic body only does more damage to your body. I am down to 6 pills but was on 18 meds. I take a probiotic and prelief which you can get through here or at any walgreens or pharmacy. I wish you the best of luck and I hope some of this info. helps. Take care.