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  • Urodynamics Experience

    Just thought I would share my experience.

    Had my test today. The nurse was very very nice.

    I first had to urinate into a bucket.

    Then I had to have probes attached near my butt and got tapped in to the clitoris with a stick type thing. It was some kind of nerve test.

    Then I had both anal and urethral catheters put in. She filled my bladder with a liquid while stuff happened on the computer and I told her how full my bladder felt and what symptoms I felt.

    The catheters and clitoral stick both hurt like hell. I have PFD and Vulvodynia too so that probably contributed. It now feels like razor blades when I am peeing. It sucks, this happened after my last cysto too but it when away within a day or so.

    Something else I found weird is that no matter how bad it hurt and how much I wanted to pee, I could not pee with the catheter in. I felt like a freak but the nurse said a lot of women have that issue.
    DX: IC, V, VV, PFD, Generalized Anxiety Disorder, PN (just chronic inflammation of the nerve, not an entrapment), Depression

    Current Treatments: Effexor XR, Gabapentin, Oral Valium, Methadone, Lidocaine, ice/heat packs, sometimes vaginal valium suppositories, Vicodin

    My Pelvic Pain Blog

    FB Fanpage for My Pelvic Pain Blog

  • #2
    I had the same experience with the catheters. I really don't know how they expect you to pee with one in. It took me forever, and I only had a few ounces in my bladder! I'm sure you're glad it's over -- I know I definitely was. Hopefully the pain you're having will go away soon.
    ----------------------
    -Amanda
    34 years old, bladder symptoms all my life
    diagnosed with PFD and VV October 2009; IC May 2010

    Current meds:
    Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
    Other past treatments:
    IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
    Tried and didn't work:
    Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture

    Comment


    • #3
      Oh, VCNJ84 - I had my urodynamics today and it was exactly like yours.

      The catheters and clitoral stick both hurt like hell

      Ditto. The nurse kept saying that it was not normal how sensitive I was.

      Something else I found weird is that no matter how bad it hurt and how much I wanted to pee, I could not pee with the catheter in. I felt like a freak but the nurse said a lot of women have that issue.

      Yeah, had that too. Only, my nurse said that it was very rare. And now the urologist thinks that I have some kind of rentention problem. How can they think that this is representative? And the peeing hurts sooo much now.

      Anyway, after the test the urologists thinks I have Fowler's syndrome or vulvar vestibulitis too.
      Not diagnosed yet

      More than a decade of 'bladder issues'
      Main symptoms: burning pain in urethra, urgency, frequency
      Triggers: Alcohol, carbonated drinks, tight jeans, synthetic underwear, stress, dehydration
      Tests: zillion negative cultures, a cysto-hydro with biopsy, two urodynamics, several cysto's and ultrasounds, a sphincter electromyogram
      Starting physical therapy soon

      Getting married 7/7/2012

      Comment


      • #4
        Why were those tests necessary?
        • 27 year old student
        • Had symptoms since I was 5
        • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
        • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
        • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
        • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


        Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

        What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

        What didn't work: Elavil, vistaril (12/22)

        Comment


        • #5
          Good question, nekura....I was certainly wondering the same after mine! My doctor was pretty sure I had IC, but she said this test would confirm it. I could only hold a few ounces of water before becoming very uncomfortable and basically screaming in pain. I was told the test would rule out other conditions, but I'm forgetting what they are right now. Maybe someone else can jump in on that one.
          ----------------------
          -Amanda
          34 years old, bladder symptoms all my life
          diagnosed with PFD and VV October 2009; IC May 2010

          Current meds:
          Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
          Other past treatments:
          IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
          Tried and didn't work:
          Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture

          Comment


          • #6
            The urodynamics is to rule out other conditions, mostly an overactive bladder, and to test your bladder capacity. They see how much your bladder can hold, and when it comes out they test how hard your muscles pull.

            However, in my case the cath hurt so much, that I don't think the test was in any way representing how my bladder is functioning in a normal setting.

            Also, for all those who need to have a urodynamics: this is not at all usual. For most people the test is annoying, but fairly painless. So please don't get nervous if you need to have one.
            Not diagnosed yet

            More than a decade of 'bladder issues'
            Main symptoms: burning pain in urethra, urgency, frequency
            Triggers: Alcohol, carbonated drinks, tight jeans, synthetic underwear, stress, dehydration
            Tests: zillion negative cultures, a cysto-hydro with biopsy, two urodynamics, several cysto's and ultrasounds, a sphincter electromyogram
            Starting physical therapy soon

            Getting married 7/7/2012

            Comment


            • #7
              As I've posted before I have HUGE problems with doctors accessing my *parts* down there and even more so when penetration is involved. I just can't handle it. Took years for my first pap smear and every year I shake and tremble before hand despite having a caring female doctor.

              Catheters going up every which way through sexual organs just seem so demeaning and humiliating to me. And once you factor the pain into it... no, just no.

              I just don't understand the "let's torture the IC patient some more" mentality when it's not absolutely necessary. I'd rather take whatever drugs they have from overactive bladder and just start from there. Though my main IC problem is pain, not frequency so maybe that set me apart.

              And then there's the cases of people who can't pee with the cath in, which makes everything for nothing and the test just gets called off. So I wonder if its worth it.

              For those of you who can go through that I envy your resilience.
              • 27 year old student
              • Had symptoms since I was 5
              • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
              • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
              • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
              • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


              Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

              What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

              What didn't work: Elavil, vistaril (12/22)

              Comment


              • #8
                Originally posted by nekura View Post
                Catheters going up every which way through sexual organs just seem so demeaning and humiliating to me. And once you factor the pain into it... no, just no.

                I just don't understand the "let's torture the IC patient some more" mentality when it's not absolutely necessary. I'd rather take whatever drugs they have from overactive bladder and just start from there. Though my main IC problem is pain, not frequency so maybe that set me apart.
                I agree with you! I've had urodynamics twice and my new urologist wants to do it a THIRD time. The first two times came up normal, but caused me excruciating pain both during the test and for days afterward. 90% of my IC problems are urethral pain and burning so catheters are THE WORST THING EVER. But the doctors always say, "well, catheters shouldn't hurt!" One even accused me of lying... ugh. And my new urologist wants me to come in for rescue instills whenever I'm in a flare and doesn't get why I'm SO opposed to that. If catheters cause me flares, why would I want to stick one in there when I'm already in a flare??

                Why can't they just leave my poor urethra alone? Haha
                Medications and Supplements:
                BladderQ
                Pyridium
                D-Mannose powder
                Cranmax

                Lifestyle:
                Lacto-ovo-vegetarian and IC diet
                Meditation
                Positive mental attitude!

                Comment


                • #9
                  right!

                  When I pressed my uro one day on how dynamics would change treatment she could not come up with a good answer. I refused to undergo the pain and she agreed.
                  I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

                  Comment


                  • #10
                    urodynamics test

                    Had one done and it was OK the hardest part for me was when they say OK Pee and I cant when they are standing there in front of me so I asked nicely can you please step outside? she did and the test came back fine nothing wrong with the muscle?
                    Blessings,
                    Ruth

                    Comment


                    • #11
                      Well I had to go back to my uro today...I have been having some changes .....I still have frequency which I have just accepted is going to be the rest of my life...(I do not take any meds as none have worked for me.)....my new problem is when I get up during the night to go...(which is usually a3-4 times a night) even if I have to pee really bad...it takes like a few seconds...to come out??? I actually have to sit there and like exhale and relax..then it will come out....and sometimes the stream is really slow...I cannot push it out faster. and sometimes I stop but I know my bladder is not empty so I sit for another few seconds and then more will come out. *sigh*

                      So back to the uro I went today...he said it really could be a muscle control problem and suggested Pelvic Floor PT...and said that I should see results from that by 4-6 weeks.....he said if I do not....then I would need to have 2 tests done....1 is urodynamics...something like they put the cath in and then fill your bladder 1/2 way (i think) and you have to pee and do someother things...then he wants to just have a look with a camera (scope?) in there.

                      He knows I am completly terrified of the CATH....18 years ago I gave birth to my only child.....while under the Epidoral they put a cath in me....I actually felt it the whole time....it was worse than the birth than everything.!!!!!!!! He knows this...he knows I am terrified..but he said if the PT doesnt work he really feels we need to do both these things.

                      How the hell am I suppose to tolerate this???? What am I gonna do? I am really freaking out right now and upset....

                      1 of my biggest fears though...is how everyone said they hurt for days...after!!!!! excruciating pain...for how long????? did everyone get better eventually????

                      I am going to post this in the other thread to to try and get as much advice as I can....

                      ***UPDATE*** I just spoke to the nurse at the office...she said they use a pediatric cath...its tiny....and that they recommend you take AZO pills for the pain when peeing after the procedure...I asked her how long the pain normally lasts??>> she said usually a day maybe 2??
                      Last edited by nnj925; 09-27-2011, 06:39 AM.

                      Comment


                      • #12
                        Originally posted by nnj925 View Post
                        So back to the uro I went today...he said it really could be a muscle control problem and suggested Pelvic Floor PT...and said that I should see results from that by 4-6 weeks.....he said if I do not....then I would need to have 2 tests done....1 is urodynamics...something like they put the cath in and then fill your bladder 1/2 way (i think) and you have to pee and do someother things...then he wants to just have a look with a camera (scope?) in there.

                        He knows I am completly terrified of the CATH....18 years ago I gave birth to my only child.....while under the Epidoral they put a cath in me....I actually felt it the whole time....it was worse than the birth than everything.!!!!!!!! He knows this...he knows I am terrified..but he said if the PT doesnt work he really feels we need to do both these things.

                        How the hell am I suppose to tolerate this???? What am I gonna do? I am really freaking out right now and upset....

                        1 of my biggest fears though...is how everyone said they hurt for days...after!!!!! excruciating pain...for how long????? did everyone get better eventually????

                        I am going to post this in the other thread to to try and get as much advice as I can....

                        ***UPDATE*** I just spoke to the nurse at the office...she said they use a pediatric cath...its tiny....and that they recommend you take AZO pills for the pain when peeing after the procedure...I asked her how long the pain normally lasts??>> she said usually a day maybe 2??
                        I can't speak to be scoped, or having a cystoscopy (I'm not sure if that's what you mean), but I can tell you about my urodynamics. It was very painful for me during the procedure when the catheter was in. I get a lot of pain with any catheter as you do. Once the test was over though, things calmed down quickly for me. I had a bit of pain and burning in my urethra for the rest of the afternoon, and then I was fine. If you have to do urodynamics, it's tolerable but definitely very unpleasant. I hope your pain doesn't last long afterwards if you decide to get one.
                        ----------------------
                        -Amanda
                        34 years old, bladder symptoms all my life
                        diagnosed with PFD and VV October 2009; IC May 2010

                        Current meds:
                        Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
                        Other past treatments:
                        IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
                        Tried and didn't work:
                        Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture

                        Comment


                        • #13
                          amanda...thank you so much for you reply and sharing your experience. Yea it is a cystoscope...so i guess they are going to do that while they are in there for the urodynamics. The dr. did offer to give me a valum....I dont really think that will do anything...but....I think I will try it none the less. I am glad too that my DH has totally agreed to come and stay in to hold my hand and bear my pain with me lol.

                          Comment


                          • #14
                            Originally posted by nnj925 View Post
                            amanda...thank you so much for you reply and sharing your experience. Yea it is a cystoscope...so i guess they are going to do that while they are in there for the urodynamics. The dr. did offer to give me a valum....I dont really think that will do anything...but....I think I will try it none the less. I am glad too that my DH has totally agreed to come and stay in to hold my hand and bear my pain with me lol.
                            Just remember you ALWAYS have the right to refuse a procedure and find another doctor. IC has no formality to it medical wise (I mean the just changed the diagnosis guidelines this summer and uros still aren't following it) and each doctor will do things different.

                            Valium will calm you down, not stop the pain. Perhaps pressure for something stronger like versed or that stuff they use for colonscopies.. Fentanyl and Versed , and something that starts with a ph.. like phosophal? I can't seem to remember how its spelled.
                            • 27 year old student
                            • Had symptoms since I was 5
                            • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
                            • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
                            • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
                            • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


                            Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

                            What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

                            What didn't work: Elavil, vistaril (12/22)

                            Comment


                            • #15
                              I am not a female, but I have been through a urodynamics test as well. I was told I could not hold much urine before I said I needed to urinate bad enough. (like I was aware) I actually got some on the floor and not all in the container because the tube was keeping my peter up a little bit.(and not up as in hard) She said she was use to seeing some on the floor, but I don't know how many males have ever been through it. Oh, well!

                              Comment

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