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New here-really need HELP!

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  • New here-really need HELP!

    Hello, I actually found this site because I really needed to vent. But by the time I was able to post and of course after several bathroom trips I am starting to calm down a bit. I need advice and support, so I hope I came to the right place. Let me begin by saying I was diagnosed with cancer last month and I am not out of the woods yet, but at this point ic is more of a concern to me than even cancer, at least as far as symptoms or quality of life go. According to my surgeon, my bladder condition and the tumor I just had removed have no relationship to one another. According to my previous urologist, it is most likely IC. Due to convenience factors and the interruption of bladder testing and treatment due to my cancer diagnosis and major surgery I changed urologists for the 3rd time. I have actually had bladder problems since I was about 4 or 5 years old. Back then, I just went more often than the average person. Then in my early twenties I began getting UTI's very frequently. That went on until about age 30 when I had my second daughter. Oddly, for about 3 years after her birth, my bladder behaved pretty normally. That brings us to present day. (I am 33) I do not know if it is relevant or not but I also suffered sexual abuse/trauma around the age of 5 when the bladder problems actually began. Anyway, since November of 2010, I suddenly began having multiple health problems. Which has confused and complicated the situation of course. But since that time, I was initially treated for a bladder infection which I really believe was improperly diagnosed, then given an antiseptic to ward of bladder infections which never solved the issue. I have not had a UTI or bladder infection on any test since then either. Anyway, I have been continuously treated for OAB when it really is more likely to be IC. Just so frustrated. I will add more later. Thanks to anyone for reading this and for support or advice...

  • #2
    I hope you have found a urologist you feel comfortable working with to reach a diagnosis. In the meantime, I suggest you put yourself on an IC diet to see if that helps. You'll find the link to the latest food list in my signature below.

    You've been through a lot. I hope you feel better soon.

    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


    • #3
      Welcome to the ICN. I am sorry that you are going through so much right now in your life. I second Donna in hoping that you have found a uro that can help you with a diagnosis.

      Wishing you better days ahead,
      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
        stick with the IC diet until you know for sure. I hope you find a good uro and a treatment plan that will work for you. let us know how things turn out, this is an excellent site for info and support.
        <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>


        • #5
          Welcome to the ICN!

          Wow, you have been through so much more than any one person should have to deal with!

          I do not know if it is relevant or not but I also suffered sexual abuse/trauma around the age of 5 when the bladder problems actually began
          I'm currently reading a book in which the author seems to firmly believe this is relevant. I'm not so sure I buy into it the theory yet. Some interesting studies have been done on the subject, though I think the analyzing data & drawing conclusions part can be a tricky business.

          Yes, it's not unusual to get a big dose of frustration when it comes to diagnosis. Hopefully you'll get some definite answers soon!

          "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."


          • #6
            Many Thank yous

            Thanks to all who replied. I am feeling calmer today. I have been looking into getting a different doctor, but I do plan on confronting my current one first on Monday. I am also seeing doctor regarding cancer on Monday and having a kidney scan ordered by urologist, all on Monday. I am also wondering about Elmiron and how bad or common the side effects really are. I have also been reading about the ic diet, beginning with beverages. I am afraid I am very much a soda lover. I have already given up caffeine months ago, I gave up artificial sweeteners as well. But I think I might be on to something that may still allow me to have some soda. I went out to eat last night and ordered sierra mist. It was a late dinner, and I admit I drank a lot of soda, about 3 glasses. Still the evenings are the worse for me, and should have been especially bad after drinking 3 glasses of soda. Still, it was not. Apparently, sierra mist has switched over to sierra mist natural and no longer contains high fructose corn syrup. I think HFCS might be a trigger for me. I have given up a lot of things recently for my health so it would be great if I could still enjoy soda. Of course, I realize I need to do it with more moderation!! LOL
            Thanks again to everyone, oh and I don't really think about how much I have been through, I feel I am stronger because of it, and made choices that made me a better person because of it rather than a bitter or jaded person, however, I am not a soldier who is brave and volunteered to go through hell or something, I am a person who really had no other choice but to accept the hand I was dealt. And where there is bad, I have also been blessed in many ways as well... Thanks again!
            Sincerely, tlgar


            • #7
              Originally posted by tlgar View Post
              I am also wondering about Elmiron and how bad or common the side effects really are. I have also been reading about the ic diet, beginning with beverages. I am afraid I am very much a soda lover.
              Hi there,


              I think the biggest side effects with elmiron for most people is stomach upset. Some people find that taking it out of the capsule and mixing it with a small amount of water helps that. I take mine with pepcid or omeprazole and that got rid of the stomach cramps it was giving me. It can cause diarhea though I haven't that effect and you could up your calcium if it did.
              The first couple of weeks it did give me a headache that has subsided. Other then that the only other thing I personally notice is when I stand up from a squatting position (which I often do because I have a little yorkie) I often get lightheaded, kind of a headrush feeling that goes away after a couple of seconds.
              I feel it is really helping me! So glad I started it.

              I gotta tell you any carbonation at all really bothers me. We of course are all different but for some reason I can't tolerate it at all. It often gives me stomach aches anyways so I was happy to give it up years ago. Once in awhile I'll forget and have one and wish I hadn't. You could try not drinking it for a few days just to see if it makes a difference or not.

              Gelnique for frequency/urgency - works great
              Macrobid after sex
              Prilosec, continuous birth control pills
              synthroid .088mg, mucinex-d, restasis

              Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

              Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

              IC Diet Link:
              AUA 2011 Guidelines to diagnosing and treating IC overview-
              AUA 2011 Guidelines to diagnosing and treating IC PDF:
              Great treatment flowchart on page 19 of the pdf