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  • frusterated

    fellow IC'ers I just need to vent and have no one to vent to and am sure many of you have and are feeling what I am feeling right now. I am new to IC and the urologist who diagnosed me and their staff are beyond none supportive. Two wks ago I was in ER due to a reaction my bladder had with a ADHD med and they were of no help next day when I called as my doc was on vaca. Then I called just now because since yesterday I have been having horrible burning and pain and was up all last night. Ofcourse yet again she is not in office there are two other urologists who work there and they didnt even offer to get me in with them. So I called another office that I was reffered to at end of month to see if maybe I could be seen today as I want to make sure this isn't a uti that I am prone to. Again very unresponsive receptionist who said there were no openings.

    Now correct me if I am wrong all you who share my pain, but don't they know how painful IC is and how similar symptoms are to uti and if left untreated how bad that could get??? I am sitting here crying because I feel so alone in this because I don't feel like I have a medical support and that I had this disease dropped in my lap and then left in the breeze. So upsetting the lack of good doctors today and how uncaring they are. Sorry this was so long, I am tired scared and frusterated and I know that soooo many of you know where I am coming from
    Thanks for listening

  • #2
    I know exactly where you are coming from - frustration, aggravation, and weariness. There were times in my journey that I wanted to scream, "Please somebody, anybody help me!"

    Have you thought about a new doctor? Is this a possibility for you? You deserve to be treated by a caring, compassionate doctor. Please don't ever settle for less!

    So sorry that you are not feeling your best physically and emotionally. At times, this disease has affected my mind and body. In addition to changing doctors, I also started seeing a therapist. My "new" normal was hard for me to wrap my mind around. Also, I stick close to the IC diet. At first this was extremely difficult but now my outlook is different and it easier to stick close.

    Thanks for taking the time to share. I truly believe pain/grief/disappointment shared is pain/grief/disappointment divided. Hope you feel better. Have the best day you possibly can


    • #3
      If you can't see your urologist, have you called your primary care physician? Earlier this year when I had a severe flare and couldn't get in to see my uro for almost six weeks, I called my primary and he helped me get through the time until I could see the uro.

      I really like my urologist, but right now all of the uros in my area have horribly full schedules. It makes it really tough for us --- I don't know what I'd do without my primary care doc --- in an urgent situation I can see him very quickly.

      Warm healing thoughts headed your way,
      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


      • #4
        I see my gynecologist for my IC. He is a specialist for uncommon pelvic disorders but he's also just a regular OBGYN. I know every woman has one or should have an OBGYN so for pelvic pain they are the person I would see if I couldn't see my uro. I don't have an urologist because my OBGYN does such a wonderful job treating my IC. A great thing about gynecologists offices is if you suspect you have an UTI they will usually get you in immediately. My doctor sees me immediately for UTI's and if I'm having pain I can normally see him within the week. I also agree with Donna that a good primary doctor is good to go to but I also know not everyone has a primary. Every woman usually has a gynecologist so try there if you can't see your primary or you don't have one.

        Take: elmiron 2twice a day
        Cymbalta once a day
        Prosed ds as needed
        Lydocaine gel for sex
        Tramadol as needed
        Oxycodone as needed

        Diagnosed with severe IC April 2011

        Suffered for 8 years without a diagnoses
        I'm 23 and have always had issues but when I was 16 things got much worse. I saw urologists, pediatricians, and gynecologists and nobody had any answers it was either in my head or an infection. Finally found a wonderful doctor who diagnosed me with IC.


        • #5
          oh man.. I am so sorry!! that is so just so wrong!! What is the dealio w/the staff at doctors office? I still haven't been able to see my urologist, my appt is next week and that was the "first" (and she stresed the word first) appt they had open (this was a week ago that I made it). I was thinking the same thing, we are in pain and need to see someone yet they don't leave anytime open for a patient who might be in real need of some relief.
          My dad was a dentist growing up and he would leave at least 45 mins for an emergency patient(s) a day. Now it seems like everything is about money rather than the patients.
          Is there an urgent care you can go to that is near? I found decent luck there and it isn't the ER, so you can at least get some sort of answers..
          big hugs to you!!
          -Pammylynn Rose
          Wishing everyone a pain free bladder day!

          Painful symptoms start in May 2011
          Diagnosed with IC in Aug 2011

          Axert (only for rare migraines)
          Strict IC diet
          Gluten/dairy/egg free diet


          • #6
            Thank You soooo much for all your support and caring. It was a tough day yesterday but I was able to get into my primary care and saw the nurse who was familar with IC and she revamped my meds and encouraged me to see an acutual IC specialist at Tufts medical center which I will def do. She said I had another infection which makes two in three wks not good. But today I'm feeling better slept some more last night sure wish I could have some coffeeeee lol, but seriously coming home and seeing all your responses made me feel so comforted thank you and I hope you all are doing and feeling great

            xo Kier


            • #7
              Hope you're feeling better.

              I hope you're feeling better. I've totally been there before. I hope your IC specialist helps.


              • #8

                thanks sweetie starting to feel bit like myself, thank you for your support