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  • Just got Botox done, OK so far

    I just came from my urogyn's office, where he injected 100 ml of Botox into my bladder. He said it would be 4-5 days before I see improvement, and if the retention is an issue, several days. I had this done with only an Aleve for pain, and I recommend taking the valium option, which I will do if I have to do this again. But it wasn't so bad, at least the actual injection part didn't last too long. I'm having some urethra burning, which is to be expected. Dr said he's hoping to find something to get me better, and he jokingly said I'd be one of the patients doing a testimonial for botox. I said, you know what, if it helps me, I will do that!

    I will keep everyone posted.

  • #2
    Re: Just got Botox done, OK so far

    Day 5--thankfully I have not had retention issue, but I'm not seeing much improvement either. They say it can take a week or two to kick in, so keeping fingers crossed. They gave me the minimum dosage of 100 ml, so if this does not work, then I may need to try a higher dose. Until then, I will be going every 20-30 minutes.

    Comment


    • #3
      Re: Just got Botox done, OK so far

      I really hope the botox helps you. Please keep giving us updates.
      Jane
      Diagnosed 1/7/14 via cysto/hydro

      Current Treatment:
      10 mg amitriptyline, DH Aloe Vera

      Used During Flares:
      Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

      Practicing bladder training and stress control (hot baths, pelvic stretching)
      Recently tried PT, do not appear to have PFD

      Things that have not helped in the past:
      Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

      Also have migraines and IBS

      Comment


      • #4
        Re: Just got Botox done, OK so far

        Yes, please keep us informed.


        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


        • #5
          Re: Just got Botox done, OK so far

          Originally posted by cjs View Post
          Day 5--thankfully I have not had retention issue, but I'm not seeing much improvement either. They say it can take a week or two to kick in, so keeping fingers crossed. They gave me the minimum dosage of 100 ml, so if this does not work, then I may need to try a higher dose. Until then, I will be going every 20-30 minutes.
          It took me about 8 days weeks to see a difference in frequency, however the improvement in urgency was immediate. Over the past 6 weeks, frequency has gradually gotten better. I am now going 12-15 times a day, on average. Before Botox it was more like 20-25 times a day.

          "When you gotta go, you gotta go!"

          Comment


          • #6
            Re: Just got Botox done, OK so far

            Bladderella, glad you saw an immediate improvement in urgency, that would be wonderful! I will reserve judgment and give it some more time. Right now I am miserable and feel like I'm in a big old flare, but this could be from the procedure itself. Fingers (and legs) crossed. ..

            Comment


            • #7
              Re: Just got Botox done, OK so far

              Originally posted by cjs View Post
              Bladderella, glad you saw an immediate improvement in urgency, that would be wonderful! I will reserve judgment and give it some more time. Right now I am miserable and feel like I'm in a big old flare, but this could be from the procedure itself. Fingers (and legs) crossed. ..
              I hear ya. My procedure was done 6 weeks ago and I have had a lot of itchy bladder, stinging and what I can only describe as a "raw" feeling in my bladder since then. It felt like I had bugs crawling around in there. I've had some sleepless nights, that's for sure. I was really beginning to wonder if I'd traded one problem for another. But those sensations have been lessening quite a bit over the past few weeks. Yesterday was the first time that I noticed I had a few hours in the day with no bladder sensations at all. I also figured out that the stabbing, stinging, doubling-over in pain episodes for me are most often caused by pressure on nerves in my bladder when I'm constipated. Miralax has helped with that issue. I imagine that it has to be a bit traumatic to the bladder to get poked with a needle 20 times so it's taken this long for my bladder to recover from the procedure. I have a 6-week follow-up appointment with the urologist on Thursday.

              "When you gotta go, you gotta go!"

              Comment


              • #8
                Re: Just got Botox done, OK so far

                Happy New Year to everyone, just checking in. It's been almost a month since I had botox done. I'm still having some frequency, though not quite as much, and the urgency is there most of the time. I still struggle with the question of why, when I have 8 or 10 oz of water with my breakfast and nothing else to drink all morning, I still just pee buckets repeatedly, almost as much as I did when I use to spend the morning quaffing Diet Cokes. No one can seem to answer that question as I'm not diabetic.

                I think it's helped some, but I may consider a higher dosage next time. Nurse prac said at follow-up last week I still may yet see some, but I don't know if she's just saying that to give me hope. I think it's worth trying again as there has been some improvement, though not as much as I'd hoped for.

                Bladderella, how are you doing?

                Comment


                • #9
                  Re: Just got Botox done, OK so far

                  If you are urinating that much urine even in the absence of drinking, or if you only drank a small amount, I would question the doctor on this. It is not normal. Unless however you drank a lot of water the day before. Sometimes our metabolism can slow down during the night and just pick up again in the morning. Then you may be urinating more from what you drank the day before. If you are worried you could also measure the exact amount of liquids you drink in a day and then also measure the output of urine throughout the day. If the numbers are way off, then I would talk to the doctor and have them look into it.









                  Originally posted by cjs View Post
                  Happy New Year to everyone, just checking in. It's been almost a month since I had botox done. I'm still having some frequency, though not quite as much, and the urgency is there most of the time. I still struggle with the question of why, when I have 8 or 10 oz of water with my breakfast and nothing else to drink all morning, I still just pee buckets repeatedly, almost as much as I did when I use to spend the morning quaffing Diet Cokes. No one can seem to answer that question as I'm not diabetic.

                  I think it's helped some, but I may consider a higher dosage next time. Nurse prac said at follow-up last week I still may yet see some, but I don't know if she's just saying that to give me hope. I think it's worth trying again as there has been some improvement, though not as much as I'd hoped for.

                  Bladderella, how are you doing?

                  Comment


                  • #10
                    Re: Just got Botox done, OK so far

                    Originally posted by jen74 View Post
                    If you are urinating that much urine even in the absence of drinking, or if you only drank a small amount, I would question the doctor on this. It is not normal. Unless however you drank a lot of water the day before. Sometimes our metabolism can slow down during the night and just pick up again in the morning. Then you may be urinating more from what you drank the day before. If you are worried you could also measure the exact amount of liquids you drink in a day and then also measure the output of urine throughout the day. If the numbers are way off, then I would talk to the doctor and have them look into it.
                    Our foods also contain a lot of liquid --- so even if we don't drink enough, we also can urinate more if we've had foods that are high liquid content --- even vegetables like carrots contain liquid. I do think asking your doctor about this is a good idea. You do need to drink 6 to 8 cups of water every day in addition to the liquids in food.

                    Sending gentle hugs,
                    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


                    • #11
                      Re: Just got Botox done, OK so far

                      Thanks jen74 and Donna, I have asked repeatedly, and my doctor doesn't think I'm abnormal in terms of output. I kept a bladder diary, but getting actual amounts is difficult unless one is home all day. He looked at what information I did collect and didn't think anything was amiss. He just thinks I have a very overactive bladder and possible IC. I mentioned PFD, but dr doesn't think this is an issue either.

                      If I drink 6-8 cups of water a day, I will be living in the toilet. Of course, I already do practically live there, so what does it matter? I'm going all day and half the night.

                      I will update again on the botox status if I feel any changes. Some days I think maybe it was worth it, and others I don't think things are much different than before. In terms of pure numbers, I don't think my frequency is down much (maybe a little), and the urgency is mostly there with occasional periods where it's not as torturous as other times. I'm pretty discouraged right now.

                      Comment


                      • #12
                        Re: Just got Botox done, OK so far

                        One thing that can happen when we don't drink enough is that the urine becomes more concentrated, which can cause inflammation and more frequency. I know that if I drink enough I may go to the bathroom more often than someone with a healthy bladder, it's worse if I don't drink enough. Constipation can also happen when we don't drink enough. What works best for me is frequent small drinks.

                        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


                        • #13
                          Re: Just got Botox done, OK so far

                          I don't know if drinking less helps or not. It's embarrassing to sit in meetings, be traveling, or working on a project with others and have to run to the bathroom every hour or half hour, so I tend to not drink much at work. I'm already tired from lack of sleep (since I have to go 2-3 x/night) and stressed from feeling the constant pressure and trying to stave off going just a little longer. That bladder training deal may work for others, but does nothing for me. Hopefully I can make it until retirement, but that's at least several years away, so here I am trying to work while dealing with this horrid disease. I'm lucky at least that my job is accommodating--I just have the embarrassment factor.

                          Comment


                          • #14
                            Re: Just got Botox done, OK so far

                            Originally posted by cjs View Post
                            Happy New Year to everyone, just checking in. It's been almost a month since I had botox done. I'm still having some frequency, though not quite as much, and the urgency is there most of the time. I still struggle with the question of why, when I have 8 or 10 oz of water with my breakfast and nothing else to drink all morning, I still just pee buckets repeatedly, almost as much as I did when I use to spend the morning quaffing Diet Cokes. No one can seem to answer that question as I'm not diabetic.

                            I think it's helped some, but I may consider a higher dosage next time. Nurse prac said at follow-up last week I still may yet see some, but I don't know if she's just saying that to give me hope. I think it's worth trying again as there has been some improvement, though not as much as I'd hoped for.

                            Bladderella, how are you doing?
                            It's been 2 months since I had the botox done. I had a handful of days where I went 12-13 times. I thought that might be my new normal, but no such luck. On a good day, I am now going about 16-18 times, 3-5 times at night. My urgency is still ok... no leaking or accidents since the botox. A lot of the crazy itchiness and stinging I experienced has subsided but it took time. I still have it, but not at the intensity it was for weeks right after the botox. I've been following the IC Food List for 9 months yet I discover new sensitivities all the time. I seem to be more sensitive to foods since the botox. This was an outcome from the procedure I didn't expect. I am really trying to pay closer attention than ever to labels, ingredients, and how often I eat certain things since now my bladder is touchier than ever.

                            Does it make a difference for you if you sip your water throughout the morning rather than drink 8-10 oz all at once? I tried drinking water by the glassfull when my IC was first diagnosed but that didn't work well for me at all. I felt bloated, peed more, and was thirsty more often. I do much better sipping water all day long.
                            Last edited by Bladderella; 01-06-2015, 08:48 PM.

                            "When you gotta go, you gotta go!"

                            Comment


                            • #15
                              Re: Just got Botox done, OK so far

                              Hi Bladderella, CJ and everyone who is contributing to this discussion!! Thanks for the update. Not sure if you read in our last newsletter that researchers are now trying to create a botox bladder instillation using liposomes which would eliminate the need for shots and the risk of urinary retention. So we're seeing really good progress there!

                              As to the water question, IC patients do better sipping water rather than drinking a glass at a time!!!

                              Keep us updated. This is really important for other patients to read!

                              Jill
                              Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

                              Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

                              Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






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