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  • Need your help, again..........

    Ok, I need some help again. I have been in this major flare for over 6 weeks now. I just can't seem to get a handle on it. I went for a sonogram and it came back negative. So today my doctor said she wants me to go next week for a Cat Scan where you have to drink that stuff and have an IV put in. I'm alittle nervous about that, anyone had that done? Also, she then said she wants me to have a Cystoscopy done, to rule out Cancer and other things I suppose. Now when I was diagnosed 13 years ago, I had the bladder distention done and I was in so much pain afterwards for so long that I swore I would never have it again. I can not remember if I had a cystoscopy or not, is it as bad as the distention? I will be knocked out right? Am I going to be in a lot of pain after, because I can't even imagine anymore pain at this point. I am just so worn out mentally and physically from this 6 week long intense pain, I just don't know what to do anymore. She's been great about giving me percocet, which for all these years has been the only thing to get me through these flares, but now I'm not even getting enough relief from them. I'm starting to get scared because why after all this time is it so bad all of a sudden. I mean I always have had pain and dealt with it, but not like this. I wish she had never mentioned the "C" word to me, because I guess now my mind is freaking out alittle bit about, gosh could this be why I'm in so much pain and can't seem to get a grip on it this time? I'm sure it's not, but the thought is just freaking me out alittle bit. Can you please tell me about your Cystoscopy experiences? Thanks so much for the help, I really don't know what I would do without all of you.

    Kari
    Kari

    I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

  • #2
    Ok, don't freak out. First of all I am sure they probably did scope with hydro when you had that done. Yes, you are in pain or uncomfortable for a while, but with me they give me about 4 months of freq. relief and some pain. In fact, I am doing my darnest to get one scheduled for the 24th. My dr. explained to me that she would perfer to go in once a year at least to take a look see, because they do not know what causes or if IC is a predisiption to anything else, it is just good to look. My grandfather died of kidney cancer, and I have large amounts of blood in my urine on most days, not to see, but under microscope, so it actually puts me at ease that if something is found, it will be soon, I choose to have two a year usually end of May and end of Dec. I too have been in such dire pain for about 3 months, my last hydro done Nov. 1st. that I am curious as to what my pictures look like. I am also working on getting a referral to a pain clinic. Good luck, to me they are not that bad, yes when you pee afterwards there is a little blood, a razor blade feeling but with pyridum, pain meds and lots of water, usually by next night I am feeling ok.

    Comment


    • #3
      I just got the results of my CT scan yesterday, and I have a kidney stone. The CT scan was pretty easy. The stuff I had to drink surprisingly did not taste bad... And the IV was the best I've ever had. The nurse who did it, knew what she was doing! I got lucky, I know.

      Anyway, about the "C" word, I was tested for that too... freaked me out!! So, everything I read about that was it has NO symptoms... The pain you are in probably rules out "C"! But the cystoscopy can confirm that and put your mind at ease. I had the office cysto, and it wasn't that bad for me, but I don't have trouble with my urethra.

      I am opting NOT to have the cysto/hydro... ever, if I can avoid it! Anyway, I hope they can get you out of this flare, and you can get relief quickly!
      ~Diane
      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
      ~~~~~~~~~~~~~~~~~~~~~~~~~

      Comment


      • #4
        Thanks for your replies, but I'm just alittle confused still. When you say the cysto with hydro, does that mean if they are doing the cysto they are also doing the hydro? Because I am NOT having that done again. Or is the cysto also just something seperate? Sorry for my stupidity here, I think will all this pain I can't even think straight anymore. If they are just doing the cysto, that is just to look at the bladder right, it's not going to give me any relief or anything right? So I will be in pain after just a cysto too? Ugh..don't like the thought of anymore pain. But I guess after not having one for 13 years, it's probably a good idea to take a look at my bladder again, just to make sure nothing else is going on right? I'm not stressing too much about the "C" word, as you said the pain wouldn't be a symptom of it I guess, it was just hearing it that freaked me out alittle you know? I hate going through all this stuff again, it's been so long since I've had to do any of this so I guess I'm just stressing alittle about it all. Thanks for the help I really appreciate it.

        Kari
        Kari

        I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

        Comment


        • #5
          Thanks Diane,
          Sorry about your Kidney stone. What are they going to do for it? Are you still in a lot of pain? I'm glad the test wasn't too bad for you, I hope I have the same kind of luck. Your brave for doing the office Cysto, I will request being knocked out for it, too chicken for the office one. I don't blame you for not wanting another hydro, I will never do that again either. Well I hope your feeling better, thanks for your info.

          Kari
          Kari

          I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

          Comment


          • #6
            Kari, Take some AZO with you and have it ready to take after the test......and that will numb your bladder after the test.......You didn't say if you are taking AZO or one of the other similar ones that's all over the counter.
            The test will irritate your bladder even more than it is but hopefully the dr. will get it figured out. IF she doesn't...after 6 weeks of pain......I'd be looking for a new dr.! Good luck! Roxie

            Double Spinal Cord Stimulator surgery 8/09
            Unsuccessful MiniArc sling surgery 12/07
            Dx'd Hypothyroid
            Dx'd Chronic Axonal Neuropathy & Myopathy
            June 2007
            Dx'd IC May 2006 (after suffering for 25+ yrs!)
            First Cysto 1979
            First Hydro 1981 (Many treatments since then!)
            Collagin"Durasphere" injections for urethra
            Gall bladder surgery Aug. 2004
            Gastric Bypass Dec. 2004
            Dx'd: Barrett's Esphogus July 2004
            Dx'd: Vaginal Atrophy 2005
            Bladder surgery 2000
            Dx'd: IBS 2000
            Hysterectomy (fibroids) 1999
            Laminectomy 1989
            Dx'd: Degerative Disk Disorder 1989

            For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
            I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

            Comment


            • #7
              Kari,
              I can see why you are getting confused. There are two different tests that uros do. If the uro just said a cysto then they were probably talking about an in office test, you are not knocked out, you are awake.

              They should give you some ladicain to numb your urethra, I would ask a head of time to make sure they are going to do this because it really does help. At least my case they put in a cath to drain out any urine I still had in my bladder. Then they put in the scope and put a little bit of water in so that the uro could see. It's not a hydro it's just enough water to inflate the bladder a little so they can see around. I'm not going to lie it wasn't comfortable but my uro was very gentle and tried to be as quick as he could. It burned after I peed the first couple of times but I drank a lot of water and it eased up pretty quickly.

              The hydro w/ cysto is the one that they knock you out for. That is the one where they over fill the bladder with water. They fill it much more full than they could do while you are awake because it would hurt too much. They do this because that is usually the only time the signs of IC will show where the bladder cracks and bleeds or where ulcers are visable. This is the one that you are probably talking about that killed you and you said that you would never have again.

              I hope this helps answer some of your questions. Personally I did not think the cysto was horrible, notd fun but not unberable. I hope this helps
              Christine



              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

              Comment


              • #8
                Christine,
                Thanks so much for clearing that up for me. I'm not to thrilled though about having to have it done in the office and being awake. Yuck. But I guess I'll have to deal with it. We'll see, maybe if my pain starts to get better by then, I will opt not to even bother and just go for the Cat Scan.

                Thanks for your help, I appreciate it.

                Kari
                Kari

                I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

                Comment


                • #9
                  Sure, glad to help, I'm glad it made sense, I took two vicoden last night before typing that, LOL. For me the in office cysto really wasn't that bad, it wasn't fun but I wouldn't freak if they wanted to do it again. Hope you start to feel better soon.
                  Christine



                  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

                  Comment

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