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  • #16
    Cranberries are extremely acid --- we call them the acid bomb!

    I was diagnosed within six months of onset of symptoms. It would have been sooner but I had a double problem --- onset of IC plus severe adhesions from an abdominal hysterectomy. Once I recovered from the surgery to get rid of the adhesions it didn't take long at all.

    Urologists are much more aware of IC than they were when I was diagnosed 36 years ago; I was fortunate in having a uro who had just finished his residency at a hospital where they saw a lot of IC patients.

    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

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    • #17
      cranberries are acidic and will further irriatate an inflamed bladder

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      • #18
        thanks for all the descriptions of the procedure! I saw a urologist today for my non-UTI UTI symptoms (I feel like I have one, and test negative) and I'm scheduled for a cystoscopy next week. I too have IBS and that...area...is just SO sensitive. Fibromyalgia too. My pain tolerance is ridiculously low, so good to hear the pain goes away I really want to figure this out and TREAT it!

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        • #19
          Originally posted by pebble View Post
          thanks for all the descriptions of the procedure! I saw a urologist today for my non-UTI UTI symptoms (I feel like I have one, and test negative) and I'm scheduled for a cystoscopy next week. I too have IBS and that...area...is just SO sensitive. Fibromyalgia too. My pain tolerance is ridiculously low, so good to hear the pain goes away I really want to figure this out and TREAT it!
          I'm the same, IBS makes things a bit awkward in that area & it doesn't help that one of my triggers for it is anxiety! Lol.

          I hope your cystoscopy goes well. I'm booked in for the 30th & thanks to the replies I've had, I'll be going for it now. Would you mind popping back & letting me know how it went?

          I've booked in at the GUM clinic for this afternoon.. I'm getting really ****** at my Drs. I've had itching for a long time now, in that area, & my Drs have been just guessing at what the problem could be. No one's bothered to do an exam to diagnose the actual problem & I've wasted a LOT of money on prescriptions! I figure the only way I can get a proper diagnosis is to go to the sexual health clinic, explain to them that there's no way I could have an STD (as I did with my Dr, who still forced me to get tested!), I have a problem, please examine it & diagnose me properly! There's still a big part of me that hopes my frequency problem is down to something like bacterial vaginosis. Might be denial.. But no harm in testing for it. My normal Dr refuses to believe there could be a connection between the itching & my bladder symptoms.

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          • #20
            oh my goodness, I know how you feel! I hope they can figure out the itching, that's no fun. And I would be one rich 24year old if it weren't for all the money I spend on IBS, Fibro, and Chronic Fatigue prescriptions. yikes!

            I will come back and let you know how the procedure goes next week! I hope they can diagnose us both soon. Good luck with everything and I hope you feel better soon! Take care,

            Allie

            Originally posted by JustmeGemmy View Post
            I'm the same, IBS makes things a bit awkward in that area & it doesn't help that one of my triggers for it is anxiety! Lol.

            I hope your cystoscopy goes well. I'm booked in for the 30th & thanks to the replies I've had, I'll be going for it now. Would you mind popping back & letting me know how it went?

            I've booked in at the GUM clinic for this afternoon.. I'm getting really ****** at my Drs. I've had itching for a long time now, in that area, & my Drs have been just guessing at what the problem could be. No one's bothered to do an exam to diagnose the actual problem & I've wasted a LOT of money on prescriptions! I figure the only way I can get a proper diagnosis is to go to the sexual health clinic, explain to them that there's no way I could have an STD (as I did with my Dr, who still forced me to get tested!), I have a problem, please examine it & diagnose me properly! There's still a big part of me that hopes my frequency problem is down to something like bacterial vaginosis. Might be denial.. But no harm in testing for it. My normal Dr refuses to believe there could be a connection between the itching & my bladder symptoms.

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            • #21
              Originally posted by pebble View Post
              oh my goodness, I know how you feel! I hope they can figure out the itching, that's no fun. And I would be one rich 24year old if it weren't for all the money I spend on IBS, Fibro, and Chronic Fatigue prescriptions. yikes!

              I will come back and let you know how the procedure goes next week! I hope they can diagnose us both soon. Good luck with everything and I hope you feel better soon! Take care,

              Allie
              They've decided I have eczema! As if things weren't bad enough down there. Hmph. It's kind of funny I suppose... Lol.

              I hope your scan goes well, I would love to hear about it My cystoscopy has been moved from the 30th to the 28th now. I'm trying to keep my mind off it so I don't stress out too much. I hope they don't mind me babbling, that's what I do when I'm uncomfortable!

              I have IBS too. What a waste of money! I wish people with chronic illnesses were entitled to free/reduced price prescriptions! Are you in the UK?

              I hope you get some answers soon. xxx

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              • #22
                Originally posted by JustmeGemmy View Post
                They've decided I have eczema! As if things weren't bad enough down there. Hmph. It's kind of funny I suppose... Lol.

                I hope your scan goes well, I would love to hear about it My cystoscopy has been moved from the 30th to the 28th now. I'm trying to keep my mind off it so I don't stress out too much. I hope they don't mind me babbling, that's what I do when I'm uncomfortable!

                I have IBS too. What a waste of money! I wish people with chronic illnesses were entitled to free/reduced price prescriptions! Are you in the UK?

                I hope you get some answers soon. xxx
                I actually live in the US, but my goal is to someday live in the UK or Canada I'm glad they figured it out, but I'm sorry to hear about the eczema! My sister had that, she always had lots of lotion with her... Hm do you also have Fibro and Chronic Fatigue? These chronic illnesses are expensive! There's just no one medicine that works for everyone..I have to try so many before I find one that works a bit!

                Funny story though, they changed my cystoscopy appointment to later in the day on the 22nd, but that conflicts with my babysitting job, so I had to change my appointment to the 29th! That said, we will have to exchange stories afterwards. Take care, hugs!

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                • #23
                  Originally posted by pebble View Post
                  I actually live in the US, but my goal is to someday live in the UK or Canada I'm glad they figured it out, but I'm sorry to hear about the eczema! My sister had that, she always had lots of lotion with her... Hm do you also have Fibro and Chronic Fatigue? These chronic illnesses are expensive! There's just no one medicine that works for everyone..I have to try so many before I find one that works a bit!

                  Funny story though, they changed my cystoscopy appointment to later in the day on the 22nd, but that conflicts with my babysitting job, so I had to change my appointment to the 29th! That said, we will have to exchange stories afterwards. Take care, hugs!
                  I've had eczema on my feet & hands for about 15 years now! Those are now under control with normal handcream & the occasional steroid cream

                  I don't have Fibro or Chronic Fatigue, thankfully. I don't think I could afford any other illnesses! Do you have insurance to cover your prescriptions? I'm not fully aware of the US healthcare system so I'm not sure how it works.
                  We pay £7.20 for each prescription & that can be as large or as small as a Doctor orders. I daren't count up how many different prescriptions I've had over the last 6 months.. All that wasted money

                  Lol, I can't believe yours is a day after mine now! I will have to post about it the night before I hope we're both ok as far as infections go afterwards.. That frightens me :S

                  Do you know of anything that triggers your bladder to get worse? At the moment I'm only really struggling with a frequency problem (although I've always got an ache or something in that area so who knows?!). I noticed that riding my bike yesterday triggered it & it went on for the rest of the night. I'm thinking about trying the IC Diet. I'm trying to eat more healthily anyway so no more processed food etc. Just don't think I can give up chocolate!!

                  It's nice to have found someone who is going through the diagnostics at the same time as I am No one else in my family really understands the problem I have, my brother couldn't understand why a trip to London might have been a problem (when he booked it I was having awful problems with my bladder). Luckily I was ok there & back. It seems stupid to have this problem at 24!

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                  • #24
                    Originally posted by JustmeGemmy View Post
                    I've had eczema on my feet & hands for about 15 years now! Those are now under control with normal handcream & the occasional steroid cream

                    I don't have Fibro or Chronic Fatigue, thankfully. I don't think I could afford any other illnesses! Do you have insurance to cover your prescriptions? I'm not fully aware of the US healthcare system so I'm not sure how it works.
                    We pay £7.20 for each prescription & that can be as large or as small as a Doctor orders. I daren't count up how many different prescriptions I've had over the last 6 months.. All that wasted money

                    Lol, I can't believe yours is a day after mine now! I will have to post about it the night before I hope we're both ok as far as infections go afterwards.. That frightens me :S

                    Do you know of anything that triggers your bladder to get worse? At the moment I'm only really struggling with a frequency problem (although I've always got an ache or something in that area so who knows?!). I noticed that riding my bike yesterday triggered it & it went on for the rest of the night. I'm thinking about trying the IC Diet. I'm trying to eat more healthily anyway so no more processed food etc. Just don't think I can give up chocolate!!

                    It's nice to have found someone who is going through the diagnostics at the same time as I am No one else in my family really understands the problem I have, my brother couldn't understand why a trip to London might have been a problem (when he booked it I was having awful problems with my bladder). Luckily I was ok there & back. It seems stupid to have this problem at 24!
                    Aww sorry about having the eczema for so long! I hope it will be under control for good, goodness knows we don't need other little pesky problems!

                    I do have health insurance which is good! I can't even imagine how costly this would be without it. Also my parents talked me into going to the super small (patient-pool-wise) branch of the medical foundation in town, at $300 extra a month. I was a little apprehensive at first since it's where my grandparents went and I thought it was just for older people! But I have one doctor who can pay so much attention to all of my issues, I can see her regularly (every one-two weeks) for long appointments, there's never a wait, someone is on call 24/7, they can make house calls..it has turned out to be invaluable in the fight to get these conditions under control! US healthcare system changed recently, thank you Obama so I am on my parents plan until I turn 26 (turned 24 in March) which is a very good thing, since the chronic fatigue/IBS/Fibro/bladder *something* does not make it possible to work a full time job with benefits yet! That is my #1 goal though. Full time job, get my own apartment (close to home and my perfect doctors office) and go back to grad school before I'm 30..get married too and have a family, but that seems a little too far off at this point! Sigh, it'll happen

                    Frequency and pain are definitely my main issues. I know about the feeling of not knowing anyone to talk to about this! I'm glad I found this network and read your post, so nice to know we're not alone! I know they say to reach out to family and friends for support...but really, even though I know they would be supportive, it's just an awkward conversation topic..I don't know how comfortable I feel talking to others about it yet!

                    I'm interested in the IC diet too, maybe I will try it for a little while. I can't pinpoint any specific trigger foods, but I do eat some of those deemed unsafe, so maybe they do cause problems. I have been on a raw vegan diet for almost a year now and can't imagine introducing cooked foods again, but for a little while I could try to restrict to the safe foods within the raw vegan diet..we shall see.

                    Take care and good luck with the appointment! We'll talk again soon. Many hugs!

                    Allie

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                    • #25
                      Originally posted by pebble View Post
                      Aww sorry about having the eczema for so long! I hope it will be under control for good, goodness knows we don't need other little pesky problems!

                      I do have health insurance which is good! I can't even imagine how costly this would be without it. Also my parents talked me into going to the super small (patient-pool-wise) branch of the medical foundation in town, at $300 extra a month. I was a little apprehensive at first since it's where my grandparents went and I thought it was just for older people! But I have one doctor who can pay so much attention to all of my issues, I can see her regularly (every one-two weeks) for long appointments, there's never a wait, someone is on call 24/7, they can make house calls..it has turned out to be invaluable in the fight to get these conditions under control! US healthcare system changed recently, thank you Obama so I am on my parents plan until I turn 26 (turned 24 in March) which is a very good thing, since the chronic fatigue/IBS/Fibro/bladder *something* does not make it possible to work a full time job with benefits yet! That is my #1 goal though. Full time job, get my own apartment (close to home and my perfect doctors office) and go back to grad school before I'm 30..get married too and have a family, but that seems a little too far off at this point! Sigh, it'll happen

                      Frequency and pain are definitely my main issues. I know about the feeling of not knowing anyone to talk to about this! I'm glad I found this network and read your post, so nice to know we're not alone! I know they say to reach out to family and friends for support...but really, even though I know they would be supportive, it's just an awkward conversation topic..I don't know how comfortable I feel talking to others about it yet!

                      I'm interested in the IC diet too, maybe I will try it for a little while. I can't pinpoint any specific trigger foods, but I do eat some of those deemed unsafe, so maybe they do cause problems. I have been on a raw vegan diet for almost a year now and can't imagine introducing cooked foods again, but for a little while I could try to restrict to the safe foods within the raw vegan diet..we shall see.

                      Take care and good luck with the appointment! We'll talk again soon. Many hugs!

                      Allie
                      Oooh, it's getting closer! I swear, every time I think about the cysto, I have a mini panic attack. I'm trying to not even look at the date!

                      Your dreams will happen if you make them I tried going to university but I have anxiety & it sent me absolutely crazy! It's great that you have some insurance atm & you're able to get your medication. I'd be screwed if I was in the US, there's no way I could fund the treatments. It does mean that our Drs have to foot the bill for prescriptions though so they will try to prescribe the cheapest thing & hope it works. I've had no end of problems from generic brands of medications. My Drs think I'm mad for saying there's a difference.. I swear there is though. (Probably TMI but when I take the brand name contraceptive pill I have a normal period, if I take generic, I have no period!)

                      I have a hard time keeping a job & I only have IBS! I was fired from my last one because I wouldn't do warehouse work. The people at the job constantly stressed me out, which meant I was in crippling pain all of the time. My supervisor even went as far as writing down every time I visited the bathroom & how long I was in there.. It was humiliating!) I hope you can find some treatment to help you with the IBS/Fibro & Bladder problems. Do you do/take anything at the moment for your IBS? Mine's been rotten for the last 2 days.. Apparently my body doesn't like chocolate anymore *cries*

                      What made you try raw vegan? Do you find it difficult to stick to? I imagine you can still eat most of the things you do now..

                      I tried explaining the frequency problem to my Mum last night & I think it just went in one ear & out the other. My brother didn't really get it either to be honest. He even said to me he didn't understand why it bothered me so much & why I would take tablets to stop going as much. He didn't understand that I spent one night going to the bathroom every 15 minutes! I can't leave the house for more than an hour unless there's a toilet break somewhere & if I'm having a particularly bad day then I can make it down the street before feeling as though my bladder is going to burst on me! I'm not doing badly at the moment, but it's still roughly every hour. I couldn't believe it when I read it's normal to go to the toilet every 3-4 hours!! How do these 'normal' people not pop?! Lol!

                      How are you feeling atm? Hope you're doing ok. It's so nice to have met you, Allie. I feel so much better knowing there's someone else there Take care xxx

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                      • #26
                        I am having a in a few weeks. I have been seeing my gynocologist for the past 2 years for chronic pelvic pain. Last Monday i was suppose to have a Pottasium sensitivity test but my Dr decided against it at the last minute. He then referred me to a colleague who was going to do a cystoscopy and i had my consultation with her yesterday and decided to go for the scope.

                        My dr wants me to do the ic diet and im starting it today. What has been your luck with the diet??? I am also taking percocet for the pain but it doesnt seem to help. any advice would be great. thanks

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                        • #27
                          The diet really helps but it takes time to get it all figured out, the other thing is you need to cut out all foods that could be problematic. If you keep eating nay foods tht bother your bladder you can't tell it is helpping you, the one offender will keep your bladder hurting.

                          Everyone is different when it comes to pain meds, you may need to try a few before finding the right one for you.

                          MG
                          My are with you all. May you all find a way to peace and joy in your lives.

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                          • #28
                            thank you MG i appreciate the advice, The diet is definately an adjustment, I'm the trigger foods and i'm learning how to adjust the diet. have you had any issues with eating beef or the homegrown tomatoes? I notice the tomatoes are a problematic food even the homegrown. i have a notebook that i write down my trigger foods. I know that this diet is very complicated to start with. Thanks for the help.

                            tikilynn1

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                            • #29
                              Just a thought I had an office cysto -actually it WAS done in the hospital but without hydro. I was SO worked up and nervous let me tell you, and yes I like you had a mini heart attack when I thought about my poor bladder being poked.

                              I refused to stay coherent lol I wanted to just sleep, (and you DO have the right to ask for this) so they gave me an ativan to relax and then just a sedative, so something that they would give you when getting for example your wisdom teeth out. Not general, but just something that Sends you off to la la land literaly for about a half hour. They had me on the table, gave me shot in my arm and that was it, night night hahaha, and I woke up to the uro in the recovery room. I had iodine ALL over my legs, and no idea what had happend. I liked it that way too. It hurt to pee for me only maby twice after, I really had no problems. I have never had a hydro when they stretch your bladder though and I refuse to get one because (although im sure it is a small chance) I dont want to make it worse. This is just my opinion though! Then there are others like Donna who have had MANY and they help her lead a normal life! Its all up to the person, but in office cystos are good for ruling out. Try not to get scared you will be ok

                              Jenn
                              28 yrs old,

                              I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

                              What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

                              Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



                              Me in my graduation gown!

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                              • #30
                                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

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