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  • disbelieving urologist

    After 4 months of waiting, i was finally able to make an appointment and get a cystoscopy done (today). I knew what the doc was going to say, bc i had one done with another doctor 3 years ago. I was hoping that bc it was a new doctor, he would have a different opinion than the previously one, or that because 3 years had gone by, IC would've had much more exposure in the urology field. Needless to say, i was super excited...until i got the results. He said that there was absolutely nothing wrong with my bladder. That I had none of the characteristics an IC patient had. That drinking 3+ litres of water per day was causing my bladder to over react, and that it was MY problem. Furthermore, he told me that i probably didn't need to be on the elavil pills i was taking and it was something i should be discussing with my family doctor, (even though she had no clue what IC was when i spoke to her about it, and she was just following directions from another urologist cuz my supply was running out)....I'm SHOCKED. I'm pretty sure i know what it was that i was feeling when my bladder was empty (ranging from burning to mild/extreme discomfort) and i really don't think my problems were caused by my 'high' water intake. Also, I had read that other IC patients have also come up with regular bladders.

    I'm starting to panic now. The urologist that i was seeing (who had originally prescribed the elavil,) was at a walk-in and he's no longer practicing at that clinic anymore. It was very easy to find his profile on the internet, though. Should i try to go back to see him at his actual practice? What about the urologist that gave me the cystoscopy? Is it really possible that he's ACTUALLY RIGHT??? From previous experience, it's so hard to change a doctor's mind about anything. I've had doctors give me that condescending glare just for asking a question, and sometimes even when it's a knowledgeable one (not necessarily about IC, just in general). Sorry, that was me venting and straying off topic. Point is, I'm really reluctant to go back to the 'cystoscopy' urologist cuz he seems pretty settled on his decision. Any advice on what i should do? I'm open to any idea!!

  • #2
    So Sorry that you are experiencing this frustration. I was diagnosed in 1995. The first urologist that I went to refused to do a hydrodistention of my bladder because he didn't believe that IC was even a real disease. Unfortunately, he is still practicing medicine, but that is another story! When I switched to a Dr. who actually was treating IC patients, he did the hydro and that is when he saw and photographed the lining of my bladder that showed the IC. I am not a medical practitioner, so this is only my opinion,, but I would recommend that you get another opinion. The first Dr. had done a cystoscopy, but did not distend the bladder. It is my understanding that the distention of the bladder is what allows the Dr. to see the damaged lining. Did you get a distention? That could make the difference. You might at least try the IC diet until you get some help. Best of luck, hope that you find relief soon. Mare

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    • #3
      An office cysto will not usually diagnose IC. I know that when I first saw a urologist my bladder looked healthy and normal until it was distended with anesthesia. That said, you might try cutting back on water to eight cups a day and follow an IC diet to see if it helps.

      I absolutely agree that a second opinion is a good idea.

      Donna
      Stay safe


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      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.

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      • #4
        Disbelieving Uro

        Hi,
        I'm so sorry you're having a hard time.
        I agree with Donna and Mare. When I had mt cysto/hydro,my uro showed me the pictures of my bladder. He explained that when they just looked at the bladder,(before distention),it looked normal (I saw that in the first picture), but when they distended my bladder(hydro), I could see the damage (second picture). So, if my doc had gone only by cysto, I too would probablyhave been told I didn't have IC.
        Given your symptoms, you might want to see another Uro for a second opinion.
        Laurie

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        • #5
          Thanks

          Thank you so much for your input, it's given me a reference point to start researching the distention aspect of cystoscopys, and thats a good place to start. thanks again. =)

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          • #6
            Hello, I was very lucky with my uro, he did a regular cysto and my bladder looked fine all other test normal. However, after the cysto I was in so much pain that I had to get an emergency visit with his partner (my uro was out of town) he told me that I had IC and started instills with that being said you can be diagnosed on symptoms alone and if you think you have IC then another opinion is what you need.
            IC diagnosis 3 weeks ago.
            Vesicare 10 mg once daily
            IBS and Gerd-Zegerid
            IC diet
            Elmiron 100 mg three daily
            Hydroxyzine 25 mg at night
            Amitriptyline 10mg at night
            Diovan 60/12.5 daily
            Topral 50 mg daily
            Zoloft 100 mg at night
            Klonopin .5 twice daily

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            • #7
              I agree with donna you need a second opinion and you need to have a hydro/cysto done to see if you have IC. Make sure the next uro does the correct precedure in the hospital, you will not be awake for this precedure.
              Then you can start a treatment plan that will work for you. In the meantime stay on the IC diet strickly. I wish you the best and let us know how things go for you.
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              • #8
                Look at the list of doctors on this website and see if any are in driving distance. Even staying overnight in a hotel room may be worth the relief of a diagnosis.
                • 27 year old student
                • Had symptoms since I was 5
                • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
                • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
                • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
                • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


                Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

                What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

                What didn't work: Elavil, vistaril (12/22)

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                • #9
                  Neg Cysto Does NOT Always Mean No IC

                  My cysto (with distention) was negative for ulcers however, after seeing a second doctor he said based on my symptoms I still had IC and that glomulations that show up during a distention are not always present in every patient. You may just have a mild case of IC.

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