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  • Dr. is not sure it's IC now . .??

    The UROGYN said if it was IC then the Heparin instills should have made me feel better and not worse. He says he suspects possible urethritis which the Doxycycline only cures 25% of the time. We are going to let my bladder and urethra calm down now for a couple weeks and I will continue taking Benadryl or Atarax. He said he sees a lot of springtime bladder issues so he's hoping this is his case although he feels something is definitely going on with the urethra. He said he can look in my urethra with a telescope and if he sees pockets of infection that he can pop them. I have never heard of this. I don't have any STDs and never have had any and I thought urethritis was pretty rare if not caused by an STD. Also this procedure sounds very painful. He said he does most of them in the office but that he can do at the hospital with anesthesia if I want. Is this a cystoscope?
    The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
    First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
    Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
    Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
    Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
    BABY GIRL 10/28/08 *** BABY BOY 7/8/11

  • #2
    if he is willing to do it under sedation at the hospital, that is the route I woud take. I also would ask him to do a hydro/cysto while he is at it, ask him to take pictures so you can have them.
    good luck.
    'The will of God will never take you where the Grace of God will not protect you.'

    Comment


    • #3
      Not all IC patients benefit from heparin instillations. Has he done any testing to rule out interstitial cystitis? If not, I think I might think about a second opinion.

      Donna
      Stay safe


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      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.

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      [3MG]

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      Comment


      • #4
        Thanks for the quick reply! So would he be able to look inside my bladder at the same time? And does this involve stretching? I think I will definitely request the hospital so I can be put under although I guess I'll be in a lot of pain after I wake up too?

        Donna he did a PST and I had no pain from the potassium solution. I was in so much pain from the catheter going into my urethra that I'm not sure I could even concentrate though. He said 13% of patients don't have positive PSTs despite having IC so that's why he wanted to see if I got relief from the Heparin instills. I agree that I don't think he should give up on the IC diagnosis quite yet.
        The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
        First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
        Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
        Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
        Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
        BABY GIRL 10/28/08 *** BABY BOY 7/8/11

        Comment


        • #5
          I do agree with Cindy and Donna.

          Dixie
          Medicine taken daily or as needed:
          1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
          2. MS.Cotin 100mg 3x daily
          3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
          4. Fentanyl 100 mg Change every 48hrs.
          5. Gentamicin 80mg install after each rescue treatment
          5 Leviquin 500mg self start as needed.
          6. Klonopin 1 or 2 daily as needed.
          7. Prosed/DS as 1 every 6hrs as needed.





          I have IC, but IC doesn't have me anymore!

          Comment


          • #6
            I have had heparin instills, Elmiron instills both which didn't help. I am currently on an endless DMSO instills since 7/06 which don't seem to help either. I have had 2 hydros/cysto and 2 cystos in office which one was done in May. I don't have any infections yet I have constant urethral burning.

            I saw a gyno 1 week ago and she didn't see any sign of infection, redness or inflammation in the genital area. She did some swabs for slides, check my uterus, ovaries and all pertinet areas. I go back next week.
            bunnykinb

            6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

            tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

            Comment


            • #7
              I agree with everyone else. What other test was done to see if you have IC?
              And having a cystoscope, I would rather do it in the hospital under anesthesia, I would not do it no other way. I hope your doctor will do more test on you.

              Take care, Trishann

              Comment


              • #8
                I have had 2 hydros/cystos at the hospital with two different uros. Both confirmed IC. In my case, I do have IC yet my bladder doesn't want to respond to anything.
                bunnykinb

                6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

                tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

                Comment


                • #9
                  Charisse,

                  I am gald for you that your condition might not be IC and could be something that may be treatable. It sounds like your doctor is flexable on how he does the test/procedure, which is great. This could be good news and maybe he can actually do something to turn your medical situation around and it won't become chronic.

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                  • #10
                    hi

                    they think that i might IC but they are not 100% sure. they had me on OAB med but they dont help. they are doing the instilliton with lidicaine (sp ?) Monday. do they hurt? if so how long? feel free to email me [email protected]

                    Comment


                    • #11
                      Traci I've only had 2 catheters this year. The first was for my PST. I seem to have a very sensitive urethra and the catheter insertion was very very painful. They didn't use lidocaine that time because they didn't want to skew the PST results. They did instill some Heparin in my bladder immediately after the PST but it didn't seem to make a bit of difference for me. My pain was mainly in my urethra and I felt like it was jabbed during the catheter insertion. A couple of hours later I started to get really sore and that night it was so bad that I was crying. That pain lasted a few days along with burning with urination and I don't normally have burning. So basically it put me into a flare. Two weeks later I got brave enough to try another catheter only this time they would be doing the Heparin instill only and not the PST. They also used lidocaine and this time the procedure was painless but 2 hours later I had the same reaction of a bad flare that lasted a few days. From what I've read we are all different here with our symptoms and the way we react however the lidocaine made a huge difference for me during the actual procedure but the pain I felt later was the same. Also I think it depends on what will be in your instill. Hope that makes sense!
                      The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
                      First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
                      Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
                      Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
                      Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
                      BABY GIRL 10/28/08 *** BABY BOY 7/8/11

                      Comment


                      • #12
                        Charisse
                        I have had IC for most of my life (I am 56) and have had 5 cytos, 3 positive and 2 negative. Negative results didn't change a thing for me. I hope they are right and you do not have it but don't go without treatment if you are still having symptoms.

                        Comment


                        • #13
                          are tests necessary

                          I see my uro in Aug. and after reading from this site I don't know if I want any of the tests. Do I have to have them in order to treat? What is a cytoscopy? are they painful? What about the ones in the doctors office? Why do a potassium test? Are treatments based on these tests? I'm really afraid of all the pain and having a terrible flare.

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