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Still no answers

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  • Still no answers

    Had the office cysto yesterday. Not as bad as I was worried it would be. My urethra is not as sensative as many of yours. Anyway, my bladder looked normal and healthy. All of my tests came back normal! No cancer!!!! and for the first time, no blood in urine ... so, my Uro was ready to release me, but I told him that I'm still having weird mixed symptoms. Sometimes pain, sometimes frequency, sometimes urgency. My pain has settled to mainly the left lower abdomen, and of course the stabbing pain I sometimes get in my vagina after voiding. He said he wanted to do a CT scan just to make sure he's not missing anything. He still didn't mention IC, and I didn't bring it up .. I'm not very good at talking to Doctors. I'm feeling like a head case but I know I'm not making up this pain... but at the same time, I can and have been living with it, and functioning fine... I just want answers...
    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

  • #2
    I've had 3 ct scans. Have you had your ovaries and such checked? Has he done any other things then the cysto? I wouldn't mention the IC to him either. Let him figure out what is wrong and then if he says nothing then mention the IC and see what he says. I had a hard time talking with the doctors too. Still do other then my Uro. They say people fear the white coat.


    • #3
      That is wonderful that the scope ruled out some things for your uro - IO bet that was a relief. Keep in mind, though, that in office cystoscopies very rarely detect IC. Most ICers' bladders look normal during those scopes. I'm glad he'll be doing further testing to determine what is causing all the symptoms you still have.

      Diagnosed August 2001

      Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

      Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

      I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


      “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

      “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


      • #4
        I'm glad that you know that you don't have cancer, that's always scary. Sorry you're really not any closer to an answer. If after the additional tests he still doesn't mention IC then I might bring it up. I had a totally different situation. MY gyn diagnoised my IC with the PST but then just put me on Elmiron and sent me on my way. I wanted to see a uro and made an appt myself. I was the one that mentioned IC to him at the first appt and he told me he wanted to rule out everything else first, which he did and it took a couple of months but then I finally had the IC diagnois for sure and now am getting better treatment, hope you will as well.

        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


        • #5
          Diane, I just wanted to let you know that my pain is also mostly on the left side, lower abdomen (or pelvic) region. And it is IC -- everything else has been ruled out, IC has been definitely diagnosed. My doctor says this left side pain thing may just be an artifact of how the nerve contacts are happening in the spine, or it might be that I have nerve damage on my right side, so that's why I don't feel anything there. He actually did some prodding and it does appear that there's some nerve damage across the center and right side of my lower lower abdomin. Even when I have direct in-bladder pain, I only really feel it at the top of my bladder. I think that pain can refer around so much in a woman's pelvis, that everything needs to be taken seriously, not just a quick look at the left ovary, or whatever.

          I hope I'm making sense. I'm falling asleep here, sorry! Go ahead and PM me if this is incomprehensible. I can't even keep my eyes open enough to proofread.
          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