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AnYoNe TrIeD BoToX iNjEcTiOnS??

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  • AnYoNe TrIeD BoToX iNjEcTiOnS??

    I am interested in hearing from people who have tried Botox injections in their bladder or pelvic floor. It is something I am considering. I have read articles online about how Botox can be used to treat urgency and frequency (my main issue right now) but I have yet to see any current patient accounts. I went back and looked through older posts on this website about Botox experiences but I found most of the posts are at least 5 or 6 years old. Since Botox injections for the bladder is still fairly new, I was wondering if doctors are more successful in treating patients with Botox today then they were five years ago?

    In the past, when my doctor has recommended treatment options, I've always gone along with her recommendations without questioning it. This time, I want to be more proactive and make sure I am making an informed decision before I let someone stick poison in my bladder. Any experiences, both positive or negative would be appreciated!



  • #2
    I have read of people who had some success --- and some who had adverse reactions. I hope some who have tried this option will respond.

    Stay safe

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    • #3
      I am going to do it on the 29th. I will be participating in a study at Stanford University so I will not know how much will be injected or if I get a placebo. I am hopeful about this though, there is supposed to be "good science". I will post about it when I get it done. They did tell me that it will be uncomfortable to get injected though.
      I don't want to die, I just want to go to the bathroom.

      I am 23 and have had IC for about 3 years now.
      I have also had rheumatoid arthritis for about 21 years, I like to think I am used to pain.

      I am interested in hearing from people with similar circumstances as I am in, like having IC and RA, being in college, etc. I feel it helps.


      • #4
        My old uro want try botox in my bladder but because I have retention as well as IC, she felt I would have to be cathed for 3 weeks after getting it as I would be unable to pee on my own. When I quized her more about this option she admitted never had done it and did not know if it would work for retention I opted not to let her use me as a guine pig. From what i have since read there is no bases for using botox for urinary retention.

        I realize these are not your symptoms but you ask for peoples expirences.

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


        • #5
          Thank-you everyone for your replys.


          I would love to hear about your experience with trial including what you think of the actual process of being injected. When will you find out whether you received the plecebo or the botox? Best of luck with the whole trial process!


          My main symptom is frequency/urgency but I have had minor issues with retention in the past. The thought of having to catherize myself for up to a couple of weeks after having the procedure is real BIG turnoff! I can understand why you would not want to be your doctor's guinea pig. Thanks for your input.

          ______________________________________________________________________ ____

          I guess Botox is not a very popular option on this message board. If I do decide to go through with it, I will definitely update everyone with my experiences!!

          Thanks : )


          • #6
            She wanted me to be full time cath for 3 weeks as she felt I would have no control and the self cath as long as needed after that. I have had botox for headaches before and for me it lasts about 3 mons.

            My other Dr. have been tring to not have me self cath because of how many infections I get, without doing it.

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


            • #7
              i just had this done 7/14 and you are put under because it is painful. He did not give me the full amount because of the side effect of not being able to pee for 1-2 months.(that does not happen to everyone)He wanted to make sure it made a difference before he gave me the full dose. I dont think it worked i am having more pain then usual. I have a call put in to him as i type this to see if its normal. Maybe it has to hurt before it gets better??????


              • #8
                When I got botox for headaches it took a few days to take effect. Probalby the same for in the bladder.

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


                • #9

                  I have had botox, and it is not something I would do again. It was one of my "last ditch efforts". Bled for several days after, suffered a lot of pain and MAD frequency for a good 2 weeks (typical for me to "go" around 25-30 times per day EVERY day). After botox, up to 60. This was a year and a half ago, my bladder has never been the same since. Sorry to have to post negative results, but it definitely did NOT work for me.


                  • #10
                    I had it done a few months ago & it took a few weeks to really notice a difference, but it did help for about 2 months. I had in done in both my bladder & pelvic floor muscles. I was not pain free, but I noticed that my bladder was not in a constant knot as well as my pelvic floor. It is a painful procedure to have done & i wouldnt ever have it done just in the office or anything...


                    • #11
                      I got it done about three weeks ago and have not felt the effects yet. I am participating in a study though, so I am not sure what dose or if I got placebo. But I wanted to describe the procedure a little. They just gave me a vicodin and some adavan for the procedure, they did not put me to sleep. They numbed up my bladder and urethra with lidocane, let it sit for about 15 min in there. They then distended the bladder a little, which I think is the worst, so uncomfortable. Then they stick something in your urethra that I guess is the needle for the injections. They did 20 different injections all over the bladder. It was really intense and felt like getting a tattoo inside my bladder. It was really painful but only lasted 5 min so it was tolerable. I was very uncomfortable after but not really from the injections, more from all the stuff they stuck in my urethra. Right now I feel like I am still recovering because I am still having heightened pain and it is difficult to actually pee. I have not gotten any relief from it yet, so not sure if I got the placebo or not. I would recommend it though because I feel like the procedure is really not that bad. I think the urodynamics was way worse. Although I cannot say anything about the actual drug yet because I am still feeling pain and am still on the pain medication.

                      Please message me if you have any questions about it, I know that not very many people have actually done it so I would like to give any info I can to people. Thanks!
                      I don't want to die, I just want to go to the bathroom.


                      I am 23 and have had IC for about 3 years now.
                      I have also had rheumatoid arthritis for about 21 years, I like to think I am used to pain.

                      I am interested in hearing from people with similar circumstances as I am in, like having IC and RA, being in college, etc. I feel it helps.


                      • #12
                        I'd like to keep up to date on this post as well. I had a cysto done recently in the office as a check-up 3 years after being origionally diaonosed. My bladder looked ok, no inflammation, but I had alot of blood vessles present, which the doctor explained was why my bladder was overly sensitive, or "on alert" as he put it. Also, he discovered that my urethra was very closed, and had a hard time getting it to open up. He said this is what's causing the "pinching" feeling. My vulvo-vaginal specialist got this news, and wants me to consider botox for my urethra muscles only to see if that can calm it down. I'm very worried about this b/c my husband and I want to TTC in Jan, and I'm worried that it may send me into a flare, or cause leaking, or more retention, and I'll be in worse shape than I am now. I also can't find much info about this procedure, and my doc said it was new to her, and she was going to try on other patients first to see how they respond. At least I won't be the first, but I'm still nervous.

                        Anyways...thanks for the great post!! I'm going to keep up on this one before i make a decision.
                        I just started a IC diet/low-oxalate diet blog!


                        • #13

                          Sabrina, I have been doing Botox since April/2003. I started with drug study for 3 years and got it every 6 months. I have problems with urengency&frquency. My Doctor is from Miami, FL and his name is Dr. Gousse. He puts the injections into the bladder about 150 units and it really works for me. I was his first person that he did.

                          Deborah Bush
                          I have IC, the IBS, Heartburn, High bloodpressure,thyrod problems, depression and clorties pain.


                          • #14
                            Hi Sabrina
                            I have been having Botox injections for a couple of years after all other treatments failed. The Botox isn't ideal but it has some benefit. Contrary to what all the doctors have told me should happen, it takes 3-4 1/2 months to start working with me. I then get about 4 months of a great result whereby my bladder is all but normal. By the 8 month mark it has worn off and I have Botox again. One problem is that I have a bit of trouble urinating for the first couple of months each time, and I have also had a paralysed bowel for a few weeks the last couple of times which has been treated with Sorbitol, a mild laxative. Each time I have the procedure, I am fine for the first month, and then I have about 6 weeks of severe disabling pain and frequency, followed by about another 6 weeks of lesser pain and frequency. The doctors have given me different amounts of Botox (150 - 300 units) each time. The effect of having 300 units has meant the 6 weeks of bad pain is even worse and the eventual benefit is no better or more prolonged so I will only have 200 units from now on. Even though I only have relief for 1/2 of the time, it is great to be able to plan holidays and events for the 4 month blocks that I know I'm going to be symptom-free and to be able to look forward to a period of such significant pain relief.
                            Diagnosed with severe IC Feb 2008. Symptoms since 2004
                            C5/6 fusion 2004. Chronic pain in neck and arms
                            C4/5/6/7 posterior neck decompression December 2012
                            Treatments tried for IC

                            Hydrodistension - made me worse for 5 months
                            DMSO installations (2) - second one caused so much pain that Dr decided not to do any more.
                            Numerous oral medications for the bladder, none of which helped.
                            4 treatments of Botox injections - minimal success.
                            Permanent Interstim implanted August 2012 - nil benefit so removed May 2013
                            Bladder nerve cauterization March 2014 and April 2014


                            • #15
                              Thanks for the post, i think this option may come up for me again, not with the prevoius Dr. but good to know what some peoples expirences has been from it.

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