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  • #1

    Potassium test next month (after a month of antibiotics)

    My dr. wants to rule out any possible bacterial cause, so before doing the PST I will be on macrobid for a month...ick.

    I'm afraid of the painful test but it's better than cysto/hydro (which I cancelled...I listened to my body. I don't think I could handle it!). I'm afraid of being on the anti for a month (I'm EXTREMELY med sensitive) but I'll do it.

    I wish they could replace my bladder/urethra (well my entire pelvic region) with healthy parts!!!

    Tracy
    (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

    Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

    I'd like to be on House, MD as a medical mystery.

    Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

    Connor & Mommy by the tree:


    Connor with Santa...so happy!


    I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

    Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

    I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!
    Tags: None
  • #2
    Hey Tracey,
    Seems like are uro's are long lost brother's, lol. My uro did the in office cysto and wanted to put me on Macrobid for 6 weeks to see my problems were bacterial in nature. I was supposed to take it for 10 days twice a day and then for 4 weeks after that once a day. I must say that it didn't help at all and even though he said that Macrobid shouldn't cause yeast infections it did for me which threw me into a flare and the OTC stuff wouldn't clear it up so I had to call the office for them to call me in some Diflucan which did get rid of it. When I called and spoke with the nurse though and told her how miserable I was and how the Macrobid wasn't working at all she moved up my appt by about 10 days for the first available appt that he had.
    As for the PST, I actually had that done at my gyn's office before I even saw my uro. It really isn't that bad, I promise. They used a really really small cath and then the put in the water, take that out and then put in the solution that's supposed to burn, as soon as you say it hurts they take it out and put in a rescue instill. I felt fine to go back to work afterwards so hopefully it won't be that bad for you either.
    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

    • #3
      Could someone explain to me what this test is and how it is done? Does it have to be done to determine IC?

      Comment

      • #4
        Hi Mary.
        This is another way that the doctors are using to try and diagnose IC. Supposedly when they instill poatassium into the bladder, a person with IC will experience great pain right away when the stuff is put in the bladder. They then put a numbing agent in right afterwards to help the pain.
        My urogyne asked me if I had the potassium sensitivity test, and I told me no and that I would not have it done as I already know I have IC. Mine was dx by a regular cystoscopy. There is no way I am having potassium put in my bladder that is already irritated.
        It is a better way to diagnose IC instead of doing a hydro though. It is less risky and less invasive. But still not a gold standard. I think that these uro's need to stop trying so hard to try and prove a person has IC. I mean they should do a regular cystoscopy to rule out cancer and other things. But if they dont find any cancer or anything else that would be causing all the pain, then that should be a pretty positive Dx of IC of you ask me. Why put a person through these needless tests for nothing. It just causes the patient more pain and distress. Besides, half the time these tests have false positives and false negatives. It just gets me so frustrated.
        Jen

        Comment

        • #5
          It was very important to me to have a definite diagnosis. I had what seemed like a multitude of tests to rule out other possibilities before I was diagnosed by hydrodistention. The potassium test was not yet available then or I would have done that. If you feel comfortable with having a diagnosis based entirely on symptoms that's fine too. It does sound like your doctor is on the right track, however.

          Warm healing thoughts,
          Donna
          Stay safe


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          Anyone who says something is foolproof hasn't met a determined fool

          Comment

          • #6
            The thing about "proving" that a person has IC... it is important to know what is causing the trouble, with a test. Someone could have PFD and have similar symptoms to IC, but the potassium test could rule out IC. Also, if it isn't the bladder, enodmetriosis growing on the outside of it could hurt, cause frequency, etc. It is good to have a diagnosis, with testing. That is why they call it evidence based medicine. Now, there are some things that are diagnosed without testing, like IBS, and some people wonder if that is a "blanket diagnosis" for when they can't ID the real problem. Don't get me wrong, IBS is very real, but a lot of people feel that it is overdiagnosed and real problems go undetected. I know someone that had endometriosis so bad and they said, "It's IBS. Take a laxative to help with the constipation and eat more fiber and drink more fluids". Well, that resulted her in the ER with a perforated colon and bleeding to death. She had to get a foot of bowel removed, endometriosis removed from her bladder and had a complete histerectomy because the endometriosis infiltrated every organ in her pelvis. She went around to doctors for countless months and they all said "IBS". So, it's good to have a dx with evidence... or else someone dx'd with IC could have something else going on!

            Originally posted by jen74 View Post
            Hi Mary.
            This is another way that the doctors are using to try and diagnose IC. Supposedly when they instill poatassium into the bladder, a person with IC will experience great pain right away when the stuff is put in the bladder. They then put a numbing agent in right afterwards to help the pain.
            My urogyne asked me if I had the potassium sensitivity test, and I told me no and that I would not have it done as I already know I have IC. Mine was dx by a regular cystoscopy. There is no way I am having potassium put in my bladder that is already irritated.
            It is a better way to diagnose IC instead of doing a hydro though. It is less risky and less invasive. But still not a gold standard. I think that these uro's need to stop trying so hard to try and prove a person has IC. I mean they should do a regular cystoscopy to rule out cancer and other things. But if they dont find any cancer or anything else that would be causing all the pain, then that should be a pretty positive Dx of IC of you ask me. Why put a person through these needless tests for nothing. It just causes the patient more pain and distress. Besides, half the time these tests have false positives and false negatives. It just gets me so frustrated.
            Jen
            [SIZE="1"][B]Be well, Alyssa :hi:[/B]

            [

            Comment

            • #7
              diagnosis of exclusion

              I tend to agree with jen74. My doctors gave me all of the tests to rule out other problems that could be causing my symptoms (such as cancer, apendicitis, etc). I had a cat scan with contrast, an in office cystoscopy, a blood test to rule out diabetes, an internal by my gyno, and a digital exam by the IC specialist and I also tried antibiotics. The IC specialist diagnosed me with IC based on my symptoms (there is a questionaire that he gave me to rate my symptoms) and the fact that all other causes had been ruled out by tests. My in-office cysto did show mild infamation around the urethra. I am glad that the IC specialist did not want me to do the PST or hydo-cysto tests. The way I look at it, if all other causes have been ruled out, and you still have symptoms, then you should be treated for IC. The pain is real. Noone would make up pain for the fun of it. If they do the PST or the hydo-cysto and they come back negative yet you still have bladder/urethra discomfort then you should still be treated for IC. So why should we need the tests? The book that my IC specialist wrote states that IC is "a diagnosis of exclusion". You don't need to prove that you have IC, you just need to be sure that you don't have something else. I do understand the point of view from those who want to have proof (maybe if my uro had not seen mild infalmation on the cysto, I also would have wanted additional tests) but I don't think proof should be required. Sending healing energy to all...linda
              Sudden onset of UTI like symtoms on Dec 27, 2006.
              Diagnosed with IC on March 12, 2007.
              Current Meds: 50mg Elavil
              "Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown

              Comment

              • #8
                The only bad thing about "proving one has IC" is that alot of these tests they have are so inadequate. There are just to many flase positives and false negatives that you just dont know what to believe. I do think having a regular cystoscopy is nessasary to rule out cancer. Also, maybe look into the endometriosis thing as well, but again, most doctors want to run you into the Operating room to do a laproscopy, which again is invasive. My gyne knows I have endo, and said it is better to try and treat the endo with lupron or birth control pills as a first choice method opposed to doing a lap which is not nessasary unless there are other issues like obstruction of the bowel etc. She is a top surgeon that has been in gynecology for over 35 years. She said that she has seen soooo many women go through all these lap surgeries to have the endo removed only for it to come right back.
                Now as far as having the endo affect the bladder, I have heard it can affect the inside of the bladder and it would cause bleeding from the bladder during your period and this should be removed and can cause IC symptoms, though a good urogyne would be able to see this with a regular cystoscopy I would think. I did ask the one urogyne who diagnosed me if endo on the outside of the bladder could cause IC symptoms, and he said it could cause frequency, but not so much the burning pain I have in the bladder, and she he said when he did the regular cystoscopy, my bladder looked inflammed inside and that endo on the outside would not cause the inside of the bladder to be inflammed like that.
                Anyhow, sorry for getting off the subject at hand. I just think it is important to have a diagnosis, but also think that at the same time, there has to come a time where we say enough is enough with all these tests. I mean yes, rule out cancer, that is very important. But I see no reason why doctors cant just start treating people for IC when they have ruled out cancer and such. Why do they have to have an absolute concrete disgnosis? I mean some people wont show it, but they do indeed have IC. Hopefully there will be a more reliable and safe test that will be able to accurately diagnose IC one of these days.
                Jen

                Comment

                • #9
                  Gearing up for the PST...the antibiotics I'm on gave me a WICKED yeast infection (altho I DO take probiotics!). I'm still scared @the thought but I just want to get it over with. We'll also be discussing cystocele/rectocele surgery (oh fun) as well as Interstim. I just don't know how I will be able to have the surgery with a 7 month old son...? My husband will be home for the most part in the summer but he DOES need to tutor (we need the $ desperately).

                  Hoping for a better, friendlier way to diagnose IC...

                  Tracy
                  (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

                  Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

                  I'd like to be on House, MD as a medical mystery.

                  Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

                  Connor & Mommy by the tree:


                  Connor with Santa...so happy!


                  I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

                  Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

                  I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

                  Comment

                  • #10
                    You know, my cystoscope was by far worse than the PST. As soon as I said, "ouch" she emptied my bladder and put in a lidocaine flush. I had a slight burning feeling that lingered, but nothing terrible. The PST was not bad at all for me (yes it hurt, but not as bad as I thought it would and it was tolerable... as long as she took it out quickly). Good luck! I'm sure you'll do fine! Maybe take a pain med before you go if you are worried, but it really wasn't all that bad!
                    [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                    [

                    Comment

                    • #11
                      Thanks for the info. I'm just tired of being poked & prodded, ya know? aaaaaaaaaugh.

                      I have a dentist appt tonite...oh fun!!
                      (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

                      Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

                      I'd like to be on House, MD as a medical mystery.

                      Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

                      Connor & Mommy by the tree:


                      Connor with Santa...so happy!


                      I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

                      Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

                      I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

                      Comment

                      • #12
                        Pst 5.25.07

                        so it's scheduled now...friday the 25th. <gulp> thanks for all of your encouragement and stories. i will let you all know how it goes...
                        (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

                        Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

                        I'd like to be on House, MD as a medical mystery.

                        Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

                        Connor & Mommy by the tree:


                        Connor with Santa...so happy!


                        I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

                        Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

                        I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

                        Comment

                        • #13
                          Good luck Tracy! Of all of the things I've had done since IC was mentioned to me this was the easiest and least painful, really. If I had to choose which test to do again that would be it. I went to work right after my PST and I was fine. You know where to find me if you need someone to talk to.
                          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

                          • #14
                            thanks christine...right now my rectocele is HORRIBLY bad so i'm battling constipation AND a wicked throat infection. actually it feels like my butt has been fused shut if that's possible? i feel like i'm dying! and i know i'm going to get my period right before friday's test...oh geez.
                            (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

                            Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

                            I'd like to be on House, MD as a medical mystery.

                            Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

                            Connor & Mommy by the tree:


                            Connor with Santa...so happy!


                            I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

                            Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

                            I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

                            Comment

                            • #15
                              Tracy,
                              I'm sooo sorry that you're feeling crappy. I posted a comment on your my space because I saw that you were feeling sick. I know about the sore throat, I had it and then I passed it on to just about everybody else in my house. I had to take three kids to the dr's at once today. They all got antibiotics so hopefully they will start to feel better soon and you will too
                              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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