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  • #31
    Originally posted by JustmeGemmy View Post
    I had my cysto this afternoon & it went ok. I told them I was really nervous so they let me go in second. The Dr did a quick consultation before going in & asked me what happened when I felt the need to go to the bathroom & what happens if I don't go.. I told him that sometimes it just hits & I have to go to the toilet.. But then sometimes I can hold it. I made it clear to him that I'd never had any incontinence because a lot of people assume that I do!

    The cysto itself was ok, the worst part was the camera going in which stung a little. Once it was in there it was fine. Not painful or uncomfortable. The weird thing was once he filled my bladder, he asked me how I felt.. Did I feel like I needed the toilet? Was I urgent? I guess most people feel uncomfortable.. Or feel something at least! I felt nothing, other than the usual pressure to use the toilet - pressure that I have about 98% of the time! He seemed a little surprised by that.. I hope he puts it in my notes. Does anyone know what this might mean??

    Pebble, I hope everything goes well for you tomorrow It wasn't worth worrying about after all. I'm a bit uncomfortable now whenever I pass urine but apparently that will pass... Let me know how it goes xx
    hi hi! I'm really glad to hear yours was alright! I'd say mine...good and bad. I believe they don't think I have IC...but they do think my problem is small capacity.

    which is why they want to do another cystoscopy in the next few days to expand the bladder, but this time under anesthesia, which will be very very very good, since the procedure itself....well I have a ridiculously low pain tolerance. I thought it was a little strange at first that two doctors had to do the procedure, but I understand now that that was good, since I needed two hands from one doctor to squeeze. I found it EXTREMELY painful (but most people can take more pain than I can, so I do not want to worry anyone.) but pain above a certain level for me means fainting and nausea. this became clear when my blood pressure plummeted, down to 85/50, so it took about an hour for me to recover enough to drive home. getting water helped a bit afterwards, and thankfully they only insisted on 0.5oz of sugar water (sugar gives me bad stomach aches) which I was able to tolerate. color came back to my face and I was feeling more steady, but my blood pressure after 30 minutes was 80/60, so they had me wait in the waiting room in the comfier chairs, and finally thought I could drive home 30 mins. later.

    but, I will have to have the procedure again...
    thankfully this time, I'll be asleep.

    but it DOES hurt to go to the bathroom now! for once I find going WAY more uncomfortable than waiting, but I assume that'll improve. I took a warm bath and had some Aleve, which is easing the pain a bit

    we have a lot of the same symptoms! there are times when it just hits suddenly, and I need a bathroom. pressure almost all the time, even if I don't have much to go, but I suppose that's the low capacity..

    I hope our doctors can solve both of our issues! they especially want me to pay attention to those "phantom" UTIs I get. if after the expanding procedure I'm still having these, then they will investigate further.

    take care hugs!!

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    • #32
      Originally posted by pebble View Post
      hi hi! I'm really glad to hear yours was alright! I'd say mine...good and bad. I believe they don't think I have IC...but they do think my problem is small capacity.

      which is why they want to do another cystoscopy in the next few days to expand the bladder, but this time under anesthesia, which will be very very very good, since the procedure itself....well I have a ridiculously low pain tolerance. I thought it was a little strange at first that two doctors had to do the procedure, but I understand now that that was good, since I needed two hands from one doctor to squeeze. I found it EXTREMELY painful (but most people can take more pain than I can, so I do not want to worry anyone.) but pain above a certain level for me means fainting and nausea. this became clear when my blood pressure plummeted, down to 85/50, so it took about an hour for me to recover enough to drive home. getting water helped a bit afterwards, and thankfully they only insisted on 0.5oz of sugar water (sugar gives me bad stomach aches) which I was able to tolerate. color came back to my face and I was feeling more steady, but my blood pressure after 30 minutes was 80/60, so they had me wait in the waiting room in the comfier chairs, and finally thought I could drive home 30 mins. later.

      but, I will have to have the procedure again...
      thankfully this time, I'll be asleep.

      but it DOES hurt to go to the bathroom now! for once I find going WAY more uncomfortable than waiting, but I assume that'll improve. I took a warm bath and had some Aleve, which is easing the pain a bit

      we have a lot of the same symptoms! there are times when it just hits suddenly, and I need a bathroom. pressure almost all the time, even if I don't have much to go, but I suppose that's the low capacity..

      I hope our doctors can solve both of our issues! they especially want me to pay attention to those "phantom" UTIs I get. if after the expanding procedure I'm still having these, then they will investigate further.

      take care hugs!!
      The pain of passing urine was awful yesterday but today I feel back to normal My bladder has been a bit irritated since though.. I hope it's just because I'm drinking more water to stave off an infection!

      I hope they're able to find the cause of your problem! I find that even when I am absolutely desperate to use the toilet, there doesn't seem to be much in there. The Dr suggested that I might need some bladder pressure testing.. Which didn't sound too bad until I googled it! Now I'm not so sure I want that doing! It sounds awful!

      Although my cysto wasn't too bad, I certainly wouldn't want to have another while awake! I have a feeling they might diagnose me with an overactive bladder.. Although they seem baffled that Ditropan didn't work for me. I keep thinking that surely some meds work for some people & not for others? I find it odd that they're using that as a diagnostic tool! Odd.

      I'm sorry you had an awful time with your cysto They told me they put some numbing gel on the area, but I don't think they did! It stung! Was it just the pain of the camera going in that hurt you or was it the whole thing? xxx

      Comment


      • #33
        Originally posted by JustmeGemmy View Post
        The pain of passing urine was awful yesterday but today I feel back to normal My bladder has been a bit irritated since though.. I hope it's just because I'm drinking more water to stave off an infection!

        I hope they're able to find the cause of your problem! I find that even when I am absolutely desperate to use the toilet, there doesn't seem to be much in there. The Dr suggested that I might need some bladder pressure testing.. Which didn't sound too bad until I googled it! Now I'm not so sure I want that doing! It sounds awful!

        Although my cysto wasn't too bad, I certainly wouldn't want to have another while awake! I have a feeling they might diagnose me with an overactive bladder.. Although they seem baffled that Ditropan didn't work for me. I keep thinking that surely some meds work for some people & not for others? I find it odd that they're using that as a diagnostic tool! Odd.

        I'm sorry you had an awful time with your cysto They told me they put some numbing gel on the area, but I don't think they did! It stung! Was it just the pain of the camera going in that hurt you or was it the whole thing? xxx
        oh I am so glad to hear the passing urine pain won't last long! I've already taken Aleve and Vicodin, and still dread having to use the bathroom. I saw somewhere that the Pyridium "dye" pills could help, so if it's still bad tomorrow, I'll go get some.

        Some urologists thought it was an overactive bladder a few years ago. I've tried Detrol LA, then Sanctura, and most recently Vesicare, but none of these have done enough to relieve the symptoms. I will see what happens at the anesthesia cystoscopy next week! and then pay attention to how my UTI symptoms feel. another cysto while awake...never again. at least as long as it is not absolutely needed. ouchies!

        I will have to read about bladder pressure testing, since the pressure is a problem I have a lot too. maybe they could do it while I'm under as well? just get all tests possible done when it can't hurt me?

        I think I'm just going to take several warm baths every day until the pain subsides. I'm really not sure if they put a numbing gel...if they did, then I have a very different definition of "numb" than the makers of this gel. At first the nurse put a tiny tube in the urethra, but not very far, and that didn't hurt a lot. it was when everything (full tube, camera, water..) that it was WILDLY painful.

        I can now add this to the list of medical procedures that cause pain and agony for me. cystoscopy, colonoscopy, sigmoidoscopy, PAP smears when they use the metal things...heh. oh gosh.

        well my dear, let me know what you hear back from the doctor and if there are other tests they want to do as well. I will let you know how things go next week! I hope you will soon feel THIS excellent if not even better.

        take care!

        Comment


        • #34
          Originally posted by pebble View Post
          oh I am so glad to hear the passing urine pain won't last long! I've already taken Aleve and Vicodin, and still dread having to use the bathroom. I saw somewhere that the Pyridium "dye" pills could help, so if it's still bad tomorrow, I'll go get some.

          Some urologists thought it was an overactive bladder a few years ago. I've tried Detrol LA, then Sanctura, and most recently Vesicare, but none of these have done enough to relieve the symptoms. I will see what happens at the anesthesia cystoscopy next week! and then pay attention to how my UTI symptoms feel. another cysto while awake...never again. at least as long as it is not absolutely needed. ouchies!

          I will have to read about bladder pressure testing, since the pressure is a problem I have a lot too. maybe they could do it while I'm under as well? just get all tests possible done when it can't hurt me?

          I think I'm just going to take several warm baths every day until the pain subsides. I'm really not sure if they put a numbing gel...if they did, then I have a very different definition of "numb" than the makers of this gel. At first the nurse put a tiny tube in the urethra, but not very far, and that didn't hurt a lot. it was when everything (full tube, camera, water..) that it was WILDLY painful.

          I can now add this to the list of medical procedures that cause pain and agony for me. cystoscopy, colonoscopy, sigmoidoscopy, PAP smears when they use the metal things...heh. oh gosh.

          well my dear, let me know what you hear back from the doctor and if there are other tests they want to do as well. I will let you know how things go next week! I hope you will soon feel THIS excellent if not even better.

          take care!
          I hope your pain has subsided! I'm completely back to normal now The pain was so bad straight after that I was scared to go to the toilet for the whole day after! Lol. Not nice :S

          What made them decide it wasn't an overactive bladder in your case? My Drs seem to lean towards that a lot, I think, but when I tell them I've had no incontinence, it confuses them! Lol. I hope you don't feel too bad after the cysto next week. Hopefully you'll recover from it quickly I've never been under general anaesthetic before.. Are you worried?

          The pressure test worries me because it involves more things being put into my bladder! I don't really like the idea of that! I'm not sure if it's something that can be done while your under.. I think they use a machine to measure pressure so possibly?

          The Dr told me he was going to put some gel on, which might give me a 'wizzing' feeling.. I'm not even sure what that means! Lol. Next thing I know, it feels like someone's put a hot poker into my urethra! That was the worst part, I think. The pain lasted all of 3 seconds, after that I was fine (Just in case anyone is worried!)

          I've not had a proper pap smear yet, I've got to book one after my 25th birthday (in July) but I've had swabs, which I'm guessing is pretty much the same thing. I don't like them at all! They hurt me.. Not agony, but more than just uncomfortable. What is a sigmoidoscopy?

          I'll keep you updated on my Dr.. Hopefully I hear from him soon! He booked the cysto & then I've not heard anything since. Odd. Please do keep me updated as well. I hope all goes well next week xxx

          Comment


          • #35
            Hi girls,

            Good to read that the pain doesn't last! I'm scheduled for a cysto end of August... Too far away to worry, really. But I remember from the past that this hurt me a lot, during the procedure itself.

            When I told the nurse about that, and asked if it would be ok if I took a mild painkiller before the procedure, she said: 'Oh, but it shouldn't hurt'. I told her I agreed it shouldn't hurt, but it does, for me Anyway, she thinks the hospitals where I went before are amateurs for hurting me like that.

            Poking with needles in painful bladders = no fun
            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

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            • #36
              Hi Eline! yes, the pain does subside the next day. in my case, quite literally! I went to sleep at 9pm last night since I wasn't feeling good after the cystoscopy. I woke up at 11pm and had to use the bathroom--it did still hurt then! My sister came home at 2am which woke me up, used the bathroom again...pain was gone! it was like it KNEW it was a new day and time to stop hurting. crazy! I would definitely recommend a pain killer before hand. that may have helped me. now the only way I'll get through it again next week is knowing I'll be asleep!

              and hello again Gemmy!! I think the doctors decided it may not be overactive bladder when three OAB medications failed me. I'm really not sure what they'll eventually diagnose me with, but I do hope this "stretching" will help out with my symptoms... I think I've now had almost 10 surgical procedures in my life, so not too worried about the anesthesia. sometimes it can be nice just to drift off to sleep. I always feel so cozy and warm! hah and when you wake up, it's all over with! and then I go home and relax the rest of the day.

              getting PAP smears is definitely a good idea as an adult woman the first few I got they used the metal things, (I can only call them cranks..) and those hurt! but the last few I've had they use the plastic device, and that doesn't hurt as much. A sigmoidoscopy is kind of like a mini colonoscopy. They don't go...up...nearly as far, and the prep for it is less intense. with colonoscopies, I'd be up ALLLLLLLLL night after taking the laxatives, but with the sigmoid I only had to prep that morning. that said, they don't put you under anesthesia for it, so I found it a little more uncomfortable..but the prep for colonoscopies is one of my least favorite things in this world, so for that I have to say I prefer the sigmoids.

              thank you for all the well wishes I will keep you posted! and at least now I know what to expect.. pain the day of the procedure, but the next day, back to normal (well, normal as in the normal amount of pain/pressure/discomfort I feel everyday... )

              hugs!

              Comment


              • #37
                Originally posted by Eline View Post
                Hi girls,

                Good to read that the pain doesn't last! I'm scheduled for a cysto end of August... Too far away to worry, really. But I remember from the past that this hurt me a lot, during the procedure itself.

                When I told the nurse about that, and asked if it would be ok if I took a mild painkiller before the procedure, she said: 'Oh, but it shouldn't hurt'. I told her I agreed it shouldn't hurt, but it does, for me Anyway, she thinks the hospitals where I went before are amateurs for hurting me like that.

                Poking with needles in painful bladders = no fun
                Hi Eline!

                I was the same as Pebble, literally the next day I felt normal again I had a little pain early in the morning when I got up (I usually get woken around 5/6am to empty my bladder), but then when I got up properly around 8/9am I felt no pain whatsoever & thankfully, no UTI! That was my biggest concern because of UTI symptoms before.

                Sometimes I guess you never know how you're going to react to a procedure & it can come down to the person doing it. I really hope you have better luck with this one!

                Pebble - I'm not sure what my Drs are thinking any more.. I had a feeling they thought it was an OAB but since Ditropan not working, they all seem reluctant to try anything else. Maybe they've now ruled out an OAB? The Dr doing the Cysto mentioned nerve problems.. I've no idea how they'd even treat that!

                Ohhh, a colonoscopy sounds awful! I don't think I'd ever have it done! I don't think I'd need the laxatives though.. Just give me a lovely coffee from Starbucks & my IBS would do the rest! Lol! I have no idea how you can be so brave to go through all of those procedures. I'm terrified of the smallest thing.. :S

                I really hope the stretching helps you & hopefully it brings you one step closer to a diagnosis What makes you think it's definitely not IC? My cysto didn't show any inflammation so I think my Drs will have probably ruled that out.. But I think for a lot of people here, a normal 'office cysto' isn't enough to diagnose IC. I'll be thinking of you next week! xx

                Comment


                • #38
                  Cysto

                  I asked for a Pediatric Scope. My Uro had to wield it around a little be more (more torquing) but it was not even noticeable. I drove home and in the next few days i just had the sensation that my bladder had been stretched (duh to me)
                  Joslyn
                  IC symptoms in May 2011
                  Mild IC dx by Cysto July 2011
                  Symtoms decrease 80% by September 2011!






                  Tums 100mg
                  fish oil 3-5 grams
                  Probiotic 5 billion
                  Magnesium
                  Bladder Ease
                  Unda Drops
                  Mediclear Plus Protein Shake

                  Physical Therapy Graduate!
                  Meditation 2x a day
                  Running
                  Castor oil pack
                  Teas (nettle leaf, linden flower, camomile, marshmellow root)

                  Have tried
                  In office instills (pridium, heprin, lidocain, elmiron)
                  Cystoprotec
                  Desert Harvest Aloe
                  atarax 25 mg
                  Vesicare
                  Lexapro
                  5HTP
                  sanctura

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