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Angry and frustrated

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  • Angry and frustrated

    I've had off-and-on IC-like symptoms for about 4 yrs now. Mostly pressure and pain, especially after I go to the bathroom. The uro said he thought I might have a "mild" case of IC... but no tests for that were actually done. This past week I've been so uncomfortable, he put me on Macrobid.. again. And, again, it hasn't provided any relief. I called the office today, feeling brave, and told them I thought I needed a cysto. The receptionist (or nurse) called me back, telling me I hadn't given it enough time, to wait 'till Monday.

    I'm angry and frustrated because I feel's been 4 years!! Shouldn't I at least have a test to rule out bladder cancer or something even worse than IC? Why aren't we talking about medications or treatments that I've been reading about here on this site... like oral drugs or pelvic floor therapies? I've called another uro in NYC who I read about on this site... do you think I'm doing the right thing to jump ship??? Thanks.

  • #2
    Yes. I think you need to see someone who specializes in IC or at least has a good amount of experience with IC, and if there's someone you've heard of who is good with IC patients, GO. So many of us have gotten the run-around from doctors, been left in pain with no treatment or diagnosis -- and it's just wrong. You deserve better care than you're getting. So go get it!

    Do you live in NYC, or nearby? I'm in the 'burbs in NJ. PM me if you want to talk; I'll be happy to send you my phone number.

    Good luck.
    Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
    Wishing you happiness and good health, and all the best out of life.

    Peace, Carolyn

    Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

    On the Beach with IC


    • #3
      What is your pain like after going to bathroom? That's my main complaint... but pain is always changing. Most of the time it's a stabbing pain, but sometimes it's a dull ache like pain. And sometimes I don't have pain at all The only reason I've had testing is because I had blood in my urine. I still don't have dx, I see my Uro next week to get results of yet 1 more test.

      Did he even test the urine for infection before prescribing an antibiotic? It really bothers me to take them when there is no infection. I'm afraid that when I need it, They won't work.

      There are no rules about seeing a new Doctor. In fact, your doctor should encourage 2nd opinions.

      I had a cysto, and it came back as a normal bladder, but I understand that IC is rarely diagnosed in a regular office cysto, and would need to be hydrodistended under anesthesia for the diagnosis.

      Good Luck, and I hope you get relief soon!
      dx: Spastic Bladder, chronic hematuria (that went away?), kidney stone... possible IC

      Medical History:
      c-sections: 1988, 1991, 1997
      Viral Arthritis 1998 (Like RA, but went away!! )
      Pterygium & Dry Eyes since 2005
      Hysterectomy (Fibroids) 2006


      Me & Jerry ~ Sammy & Ryan


      • #4
        Thanks for your supportive words. I've put a call into the NYC doc... I need a plan of action!


        • #5
          I would say that everyone else is on the right track. You should call the other dr and see what they can do for you. If the uro thinks you have a mild case of IC why would he prescribe Macrobid. If you don't have an infection that shouldn't help at all. If he hasn't been willing to do other tests or try meds that might help then there doesn't seem to be much point in seeing him anymore. I hope you find some answers and relief soon.

          I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
          1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
          2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
          I have tried every oral medication as well as rescue instills and DMSO.

          I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

          Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
          Also proud mom to the best Bullmastiff on earth, Claus


          • #6
            hi welcome to the icn.. I agree with the other gals, you need to find a new doctor, that knows what he is doing when it comes to ic.
            'The will of God will never take you where the Grace of God will not protect you.'


            • #7
              Hello and welcome ..I would get a new doctor.. Also if you are having lots of pressure that really could be PFD.. and yes therapy should help..

              ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

              Link to Patient Handbook:

              Diet Reference Sheet:

              Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

              Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

              Meds I have Tried:
              Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
              Lexapro< Bad reaction to this med!
              Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

              Dx With IC in Nov 2006 with Hydro/Cysto
              Hydro/Cysto Caused Bladder to Rupture.

              Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

              ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.