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Well, I finally had an office "cysto" and 'survived it!

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  • Well, I finally had an office "cysto" and 'survived it!

    After months of suffering and putting off going to a "uro" (I hate doctors!!) I finally caved in and went last month (after waiting 2 months for an appointment.) That visit was a general, over-all look at the area as the doc is a uro/gyne. He did two urine cultures and found microscopic blood so, even though I have few symptoms anymore (constipation and difficulty initiating bm's being the worst with very occasional urgency/frequency and urethral burning) he wanted to follow up on the blood problem.

    (BTW, my symptoms have subsided quite a bit over the last few months by following the diet, mild exercise, relaxation techniques, yoga and a steady regime of acupuncture and Chinese herbs by an internal medicine MD who, also, has a degree in Traditional Chinese Medicine. )

    So last Friday I had my second office visit and 'had a cysto done. I nearly swooned when I saw the size of the tube he was about to insert (!!) but 'was committed to having it done so I just clenched my teeth and endured it. He put some salve or something on the urethra to numb it up but that was all he gave me.
    I had taken a tranquilizer at home as I was so anxious about having it done. The whole procedure took about 5 minutes or so. The doctor was very kind and sympathetic as he knew how nervous I was. It didn't really hurt until the very end when he had put so much water in my bladder (550 cc's) that I felt it was going to explode. He immediately cathed it out and ended the procedure saying he was satisfied with the results - no sign of disease - just a normal looking bladder.

    My husband sat in on my appointment and he observed the monitor as the camera snooped around inside my bladder. He agreed that everything looked very calm - just a smooth, creamy looking bladder wall.

    In essence, the uro/gyne said he thought I might have had a mild case of IC a while back but there was no evidence to support that idea now - just my word as to my previous symptoms. He referred me to a pelvic floor specialist for therapy to try to do something about the bm problem.

    So that was it - I feel relieved that I finally went to a uro (thanks to my friends at ICN for constantly encouraging me to do so!!) and 'glad that the doc didn't find any polyps or tumors but 'somewhat stymied that I don't know for sure what caused my miserable summer and fall of '06. I feel I did have a bout with IC and hope I never have another one, just as in 1999 I had a terrible "dance" with ulcerative colitis and never had one since.

    I have my fingers crossed...

  • #2
    They made you endure a hydro awake!?!?!? I thought that NEVER happened. Yeah, when I asked my Urologist about being totally asleep, he said that was how he did hydrodistentions. Did your doc not have access to a hospital or outpatient surgery center?
    Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

    Comment


    • #3
      To me it was just an "office cysto" as so many here have described. Don't they all have water input to make the bladder wall easier to see?

      I don't know - to me it was short, informative and didn't hurt at all!!! The doc was very alert to any possible dis-comfort and there was none.

      I feel very relieved and 'would recommend it to anyone. That's why I posted it - to encourage other "scardy cats" to make the plunge.

      Comment


      • #4
        I'm going to be having my first office cysto on Tuesday. I must say that I am nervous. I did have one back when they found endo in my bladder a couple of years ago but that hurt like crazy. I'm hoping this one won't hurt, it doesn't help that my bladder has not been doing soon good lately, been in a flare. I took the day off work just in case it does bother me. Thanks for the info though izazen. Nice to know that someone had a good experience.
        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


        • #5
          Griff's Mom, all I can say is I am sooooo relieved after having my office cysto and I could cry when I think of all the months that I suffered not knowing. As ICN Donna says "not knowing is the worst."
          I could kick myself in the butt for all the sleepless nights and worry-filled days I have had.

          At the end of Sept my husband and I went to a concert (the first time out since I got sick) I looked like a concentration camp victim - my clothes were hanging off me and my face was so sunken in - I was ashamed for my family and friends to see me so I hid from them over the holidays and just cried and cried over Xmas missing my old life so much.

          It just seems since then things have turned around and I have to thank my prayers, my husband's TLC and healthful meals and Dr. Lo, my Chinese medicine internist, plus all the valuable information I garnered from the ICN.

          Comment


          • #6
            Izazen,

            I am so glad you had a good experience. Unfortunately, my pain, retention and problems have been MUCH, MUCH worse since my hospital hydro/cysto. Since having had them, I have had to increase my pain medication from Lortab 7.5 once or twice a day through Percocet, all the way to Methadone 10mg twice a day...so I WISH mine would have went that well. To feel relief at this point, would be wonderful. Again, I am glad you did well. I pray everyone else who has to have one will do well....and that those of us who had awful experiences with it and since will receive relief.
            Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

            Comment


            • #7
              Aprilchen,

              I guess its a question of semantics. I don't feel I really HAD a "hydro-cysto" which certainly would require a hospitalization procedure similar to that of a colonoscopy which I have had several times.

              I don't think a 5 minute office procedure can be classified in the same category as a hospital "hydro cysto".

              I hope you feel better very soon.

              Comment


              • #8
                So only a cystoscope, then? They did not stretch your bladder and put water in it to fill it to its capacity??
                Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

                Comment


                • #9
                  No, not to capacity which would be like 1000 cc's or more - just to 500 cc's so he could get a look. To stretch the bladder to the maximum you would definitely have to be "under" and in a hospital setting(!!!) Ouch!!

                  Comment


                  • #10
                    I'm so happy that it's over for you. Good luck with your PFD therapy!

                    I hope you get a great therapist with lots of experience in treating this horrible thing.
                    8/2007 - My constant bladder pain is now gone due to a surgery where the ilioinguinal and iliohypogastic nerves were cut. I still have IC symptoms but they are improving. It's still early to say, but I believe this solution will work permanently for me.

                    Symptoms since 2005 - 24/7 abdominal pain, cold sweats, low back pain, vulv, etc.
                    Surgeries: Spinal Fusion L4-L5-S1 10/97, Anterior spinal fusion L5-S1 9/05, Lap for Cysts, Endo 9/06, Hysterectomy kept cervix 12/06
                    Meds: Morphine, Neurontin, Valium, Hydroxyzine, Vivelle Estrogen, Thyroid,
                    Exercise & PT: All at least 4 times a week
                    Whirlpool baths, Moist heat, Treadmill, Stretching, Trigger point, Yoga Positions; Ab & Pelvic Massage

                    Comment


                    • #11
                      office cysto

                      Hi thre,

                      You might look into finding a urologist that will do a potassium sensitivitiy test to test for IC.

                      An in-office cysto only shows IC if you have a severe case with changes such as Hunner's ulcers (less that 10% of IC patients according to well known IC doctor, Dr Moldwin). Also hydrodistension under a general does not show all cases of IC. Have a look at these two articles on IC from this site.

                      http://www.ic-network.com/md/OP371a_8_28.pdf


                      http://www.ic-network.com/md/Clinical_Courier0705.pdf


                      Kathy

                      Comment


                      • #12
                        Thanks for your response but I have heard so many terrible things about the potassium test! Ugh!

                        I got a dx of "painful bladder syndrome". I know that to get a dx of IC I would need to take a full hydro cysto and, right now, I'm satisfied where I'm at with the PBS dx.

                        Comment


                        • #13
                          [QUOTE=izazen]After months of suffering and putting off going to a "uro" (I hate doctors!!) I finally caved in and went last month (after waiting 2 months for an appointment.) That visit was a general, over-all look at the area as the doc is a uro/gyne. He did two urine cultures and found microscopic blood so, even though I have few symptoms anymore (constipation and difficulty initiating bm's being the worst with very occasional urgency/frequency and urethral burning) he wanted to follow up on the blood problem.

                          (BTW, my symptoms have subsided quite a bit over the last few months by following the diet, mild exercise, relaxation techniques, yoga and a steady regime of acupuncture and Chinese herbs by an internal medicine MD who, also, has a degree in Traditional Chinese Medicine. )

                          So last Friday I had my second office visit and 'had a cysto done. I nearly swooned when I saw the size of the tube he was about to insert (!!) but 'was committed to having it done so I just clenched my teeth and endured it. He put some salve or something on the urethra to numb it up but that was all he gave me.
                          I had taken a tranquilizer at home as I was so anxious about having it done. The whole procedure took about 5 minutes or so. The doctor was very kind and sympathetic as he knew how nervous I was. It didn't really hurt until the very end when he had put so much water in my bladder (550 cc's) that I felt it was going to explode. He immediately cathed it out and ended the procedure saying he was satisfied with the results - no sign of disease - just a normal looking bladder.

                          My husband sat in on my appointment and he observed the monitor as the camera snooped around inside my bladder. He agreed that everything looked very calm - just a smooth, creamy looking bladder wall.

                          In essence, the uro/gyne said he thought I might have had a mild case of IC a while back but there was no evidence to support that idea now - just my word as to my previous symptoms. He referred me to a pelvic floor specialist for therapy to try to do something about the bm problem.

                          So that was it - I feel relieved that I finally went to a uro (thanks to my friends at ICN for constantly encouraging me to do so!!) and 'glad that the doc didn't find any polyps or tumors but 'somewhat stymied that I don't know for sure what caused my miserable summer and fall of '06. I feel I did have a bout with IC and hope I never have another one, just as in 1999 I had a terrible "dance" with ulcerative colitis and never had one since.

                          I have my fingers crossed...[/QUOT

                          Wow, I never knew that IC could only happen once and never again? Perhaps you never had it in the first place.

                          Comment


                          • #14
                            For smcclafferty: IC is not something that happens, then goes away. It's very possible to have remissions or times when we feel better, but as of right now interstitial cystitis doesn't have a cure.

                            The procedure being discussed here was not a hydrodistention. When a cysto is done in the doctor's office, what they do is to view the bladder lining. When the bladder is empty it collapses, much like a balloon, so in order to see it, a sterile water solution is instilled --- not to stretch the bladder. This procedure will help to rule out other causes for the pain, but will not usually diagnose IC. When I had my first office cysto, my bladder looked completely healthy and normal. It was not until it was "stretched" under anesthesia that the pinpoint bleeding and Hunner's ulcers were visible.

                            Donna
                            Stay safe


                            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                            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.

                            Patient Help: http://www.ic-network.com/patientlinks.html

                            Sub-types https://www.ic-network.com/five-pote...markably-well/

                            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                            [3MG]

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

                            Comment


                            • #15
                              OUCH (insert scream, too)!!

                              I can't imagine having a distention w/o being totally sedated. The last hydrodistention I had was under anesthesia and when I woke up, the nurse had to immediately give me pain medication through my I.V.. Just the thought of having that procedure done in the Uro's office makes me hurt! I do remember after having it, that for about 2 months, my I.C. was much less 'bothersome' (that's putting it mildly). It's not that way now. Most of my flares happen instantly if I get stressed about ANYTHING! I hope my new doctor for pain mgt. gives me something stronger for anxiety and stress.
                              Dani


                              -Bladder surgery to correct reflux-'68
                              -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
                              -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
                              -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
                              -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
                              PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
                              -DX'd with IBS in 2000
                              -Rhabdomyolysis in 2001 (has not returned)
                              -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
                              -DX'd with TMJ in 2000-wear splint
                              -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
                              -DX'd with Epilepsy -2000
                              -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
                              -DX'd with Fibromyalgia (2006)

                              Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

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