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  • In Office Cystoscopy For Prognosis Of Ic

    I have had two cystoscopies/hydrodistentions at the hospital by two different urologists. One was to confirm IC and the other was to see how the IC was doing. Recently, I had a cystoscopy done in the office on 5/16/07. The third urologist who is chief of urology at the University of California, said my bladder looked good and my IC was better than I thought. But, dingy me, I was so paniky getting an cysto in the office that I completely forget to ask this "How can a urologist see how my IC bladder is doing after completing my DMSO treatments based on a cystoscopy only?" Wouldn't the uro need to do a hydrodistention as well?

    I appreciate your comments on this. I am going back for a follow up next month for trying out Vesicare and will ask this question too, but wanted my friends here to give input.

    Thanks.
    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


  • #2
    That is a tough one. I was actually diagnosed with IC through a regular cystoscopy, though I insisted on being sedated, so he probably got a better look and did not have to rush. It is possible that the DMSO could have helped heal the lining some. Did you still have alot of symptoms when you had the in office cystoscopy?
    Jen

    Comment


    • #3
      I started DMSO instills July 2006 through April 2007. All during treatments, I continually have burning. I kept telling the uro that I didn't think the treatments were helping because of the burning. He said he wanted me to continue the treatments. I am now taking Vesicare for the frequency, but my first tinkle visit after my morning one is about 2-3 hours later, then after that, I am still visiting the restroom every hour. I have a follow up appointment June 13.

      My first uro had done a cystoscopy in office back in May 2006 but said he couldn't diagnose IC until he did the cysto/hydro in June 2006. He said the bladder couldn't be stretched enough to see the glomerations. I have read so much at this website about diagnosing IC through cysto/hydros combo not just a cysto only.

      Jen, how much could your bladder hold under the cysto in the office?
      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


      • #4
        I was diagnosed with mild IC in 2004 from a bothersome symptoms survey, an interview and a pelvic. I had urodynamics testing in September of 2006 (for separate issue concerning surgery for vault prolapse) and mild IC was indicated, which confirmed the earlier diagnosis. I could see the monitor and my urogynecologist pointed out the vessels that showed IC. He also showed me pictures of advanced or severe IC so that I could compare my IC.

        One of his latest research was concerning diagnosis of IC with bothersome symptoms compared with more invasive procedures. His research shows that IC diagnosed with the surveys, pelvic and interview are as accurate predictors as the invasive testing. If I had not needed the assessment for surgery I would not have had the urodynamics.
        TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
        My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

        Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
        Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
        I post to encourage and offer total support for rescue instillations.
        Find me on facebook: L. Clark Thomas
        Louann

        Comment


        • #5
          What is urodynamics testing? Why would most uros say that IC can only be diagnosed with cysto/hydro and not cysto alone? I am having burning again today. I am thinking if my bladder is really better, than maybe my burning is a gyno issue?
          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


          • #6
            Hi Bunnykinb.
            I am not sure how much he filled my bladder when he did the regular cystoscopy, I had him sedate me though. He did say that I had IC though as he said my bladder was extremely inflammed. He did not have to do a hydrodistention. I guess some people it shows up with the regular cystoscopy and some it does not.
            Hydrodistention is what they call the " gold standard" when it comes to Dx IC. This is not true really because For one thing, there are false negatives and false positives with this test. My gyne had told me that they did a study where they did the hydro on people with IC and people without IC. She said some of the people without IC had pinpoint bleeding after the procedure and a positive Dx which was inevidably caused by the hydro and stretching the bladder to much. There are some less invasive tests like the potassium test, which again, is not concrete. I would say that if they ruled out cancer and such, they should just go ahead and treat you for IC. Why go through an invasive test if you do not have to. Though this is totally up to you. Good Luck in whatever you decide.
            Jen

            Comment


            • #7
              Urodynamics is a test that determines bladder function….capacity, flow, urge.

              You empty your bladder and the residual is measured. A Foley catheter is inserted and the bladder is filled with saline solution. There are 3 urge “points” they identify based on when you feel the urge to go to the bathroom. Measurement are made with the computer of a number of things including nerve function.

              With the test I have had they look at the bladder with a cystoscope while it is filled. The first 2 test (2002, 2003) did not show IC but the test in 2006 showed IC. None of the urodynamics test were done for IC diagnosis. They were done for pelvic prolapse problems. I could see that my IC looks like a blood shot eye.

              My urogyne think IC is too limited in scope and should be called Pelvic Floor Dysfunction. He thinks that IC is not "one" diagnosis but "one of a bunch" of diagnosis. I don't really care if they call yankee doodle...my treatment works for me.
              Last edited by L. Thomas; 05-29-2007, 01:45 PM.
              TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
              My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

              Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
              Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
              I post to encourage and offer total support for rescue instillations.
              Find me on facebook: L. Clark Thomas
              Louann

              Comment


              • #8
                The first time I had the cystoscopy was in May 2004. The uro said he couldn't diagnose IC unless I had the hydrodistention. I only had 2 glomerations at that time with no blood loss with the cysto/hydro. March 2006, I asked the secon uro for another cysto/hydro to see how my bladder was doing. The 2nd uro didn't make any suggestions for a cysto only. With the second cysto/hydro, I had more glomerations and blood loss. Both times under sedation, my bladder was filled to 850 cc.

                Upon the 3rd uro, with the 5/07 cysto, my bladder was filled with water and saline solution and I had to try and hold the water and was told to say when it was painful. The capacity while awake was 320cc which the uro said was good. Past uros had said 300cc was only a third of what a normal person could hold. The current uro said my bladder is what a normal person would hold but my bladder wants to empty as soon as it has just a little urine. So, I guess in a sense I must have had some urodynamics testing? I am confused why all three tests where I held on 300cc approximately, why 2 uros said it was only 1/3 of a normal person while the current uro said it was a normal size.

                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
                  Despite the 3rd uro's opinion that my bladder is better than I think is not correct. Here I am in so much pain from a burning urethra. I am in so much pain that I just want to cry and cry, but instead I have to endure my suffering because I don't want my kids to see me hurting so much. I don't know what to do for myself. I hate my body so much right now.
                  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


                  • #10
                    Oh Bunny I really feel for you and understand how you're feeling. I am at that same point right now. Especially about hating your body right now and not wanting your kids to see you cry Hang in there and I hope you feel better soon!

                    Comment


                    • #11
                      generally speaking, an in office cysto the worst IC blader can look normal. I was told my bladder was perfect and nothing wrong with it.
                      'The will of God will never take you where the Grace of God will not protect you.'

                      Comment


                      • #12
                        Thank you for your sympathy. I am no where near good. How can the uro say that when I feel so horrible. Today, I don't feel as bad. I guess the urelle has kicked in. I still feel some slight burning. I just woke up from a 3 hour nap. Sleeping is the only thing to do when I feel so bad.
                        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


                        • #13
                          Sleeping is the only things that helps me too, until that meds kick in anyways. I was diagnosed by symptoms, ruling out other possibilities and Hydro under anesthesia. When I decided to get a second opinion for more treatment options, the Uro I saw at the second practice had me go through ANOTHER in office Cystoscopy, even though he had all the results of my Hydro and pics of the pinpoint bleeds. Anyways he sat there and showed me how "great " my bladder looked. He said it was possibly not IC at all. That blew me away! He didn't want me to come back for 6 months and I knew I couldn't go on feeling so awful for 6 more days, let alone months. So I went to an IC specialist. And surprise surprise! He confirmed I did have IC, that around only 10% of IC patients have Hunner's ulcers, or any inflamation visable through Cystoscopies. He said IC severity is judged by symptoms and responses (or lack of ) to therapies. Because of what I tried and my symptoms, he said my IC is anywhere from moderate to severe and that I had PFD as well. So just because your bladder "looks" good, doesn't mean the disease isn't there and that your symptoms aren't horrible and affecting your quality of life.
                          I hope you feel better soon and find something that works for you. PM me if you need anything!
                          Rachel
                          DX's:
                          IC; PFD; possible Fibromyalgia; IBS;

                          Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                          I've Tried:
                          three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                          Currently using:
                          Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                          Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                          I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

                          Comment


                          • #14
                            I asked for a second hydro/cysto with the second uro. The third uro hasn't done a hydro yet. I bet if he did, IC is still very much present and causing major discomfort. I don't have Hunner's ulcers. My kids are almost out of school and I don't want to be telling them mommy doesn't feel good to do anything. I am ready for another nap. This burning is definitely the urethra and not the labia as I had that before.

                            Thanks for your thoughts.
                            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

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