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AnYoNe TrIeD BoToX iNjEcTiOnS??

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  • #16
    Thank you everyone for posting replies. It is a little more reassuring to hear some positive experiences with Botox.

    Stacy: Thanks for sharing your experience with the actual procedure. Please let me know if you have success with it. I hope, for your sake, that the injections were not placebos! Also, you mentioned that you had difficulty urinating after the injections. Were you able to urinate unassisted (i.e. no catheters)?

    Deborah: You mentioned that you have been getting Botox injections since 2003. Does your doctor consider this a long term solution or are you going to eventually look for a more permanent solution? Also, to your knowledge, are Botox injections safe to take on a long term basis?

    Jellyfish: Does the Botox temporarily cause or increase the severity of pain and/or frequency?? Also, a "paralyzed bowel" does not seem like much fun; I'm hoping it just sounds worse than it is. In addition, you mentioned that you had trouble urinating after the injections...........were you able urinate unassisted (without the use of catheters)?

    Jellyfish and Deborah: Was the actual procedure (of receiving the injections) similar to what Stacyoigirl described???

    Thanks everybody


    • #17
      When I got botox for headaches I was told I could not get them more often than every three months, and I could get them as long as I needed them.

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


      • #18
        Hi Sabrina, The paralysed bowel has meant that there is no sensation or urge to go so I get constipated. The problem varies a bit from week to week and wears off eventually. At the moment I am only having the laxatives once a week. Once at its worst I hadn't been for 8 days and had to take the preparation people are given before a colonscopy. The bowel problem didn't happen when I had the smaller amount of Botox which is what I will have from now on. The urologist said he had never seen anyone have bowel problems from Botox before.

        With the urinating difficulties, it too is worse with the higher Botox amount. I have never needed a catheter but when my bladder is bad and I need to go frequently in the night I find I might have to sit there for several minutes to get anything out, and sometimes nothing will come out. Then I might try successfully five minutes later. It is only a problem when I am passing very small amounts (a few drops). When the bladder has a bit more in it it doesn't happen. This problem also wears off before the Botox starts improving the problem.

        The pain and frequency is always worse 1 month after the Botox surgery and stays like that for a couple of months. Because the pattern is always the same I am assuming the Botox is causing it.

        As far as having the Botox goes, I have only ever had it under general anaesthetic and would never have it without as they give about 30 injections with the aid of a cystoscope to see what they are doing. Each time, for a few hours afterwards, I have to pass urine every 15 minutes or so, which hurts a bit, there is a little bit of bleeding, and then by the next day it has settled enough to resume normal activities.
        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


        • #19
          Ive had botox twice, just recently had the second round about 3 weeks ago...and id have to say the more botox you do, the more risk you have of going into retention.

          And id say the pain is worse for awhile after.

          and the botox usually doesnt show its side effects right away, usually a week or two.

          theres definitely a lot of pros and cons...sometimes u risk getting infections afterwards and the pain. just one of those things you have to decide.


          • #20
            Luckily I have not needed a catheter to pee. I will try to go, have nothing happen, get up and come back 5-10 min later, do this three times and the fourth time trying I will be able to go. Or if I can go the first try I will have to push really hard to get it all out. Right now it sucks because when I cannot go I still feel like I need to, with pressure and pain, so in the middle of the night I cannot get back to sleep until I can actually go.

            It does give me some hope that this might go away and I will feel good. Hope the same happens to me! Right now things are the same, pain and frequency, with trouble actually going thrown in. Although not sure if it is worth all the pain and trouble if it does end up helping for a little bit.

            I don't know! I just want to be normal!
            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.


            • #21
              Please don't strain to urinate. It will cause more swelling and make it even more difficult to urinate.

              Stay safe

              Elmiron Eye Disease Information Center -
              Elmiron Eye Disease Fact Sheet (Downloadable) -

              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:


              Diet list:

              AUA Guidelines:

              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.

              Anyone who says something is foolproof hasn't met a determined fool


              • #22
                Stacy I am in the same boat. & it's frustrating because I can't empty. Itsvlike my muscles are dead... Without catheters I'd be in trouble. I'm hoping it wears off some. How much did you have done & where?


                • #23
                  I have had over 47 shots of botox injected into my bladder unfortunatly without any help other than a very small reduction of frequency, for the cost of the botox and the procedure i was not happy but everyone has different experiances. I hope all goes well good luck keep us informed on how things go. God bless!
                  Cara Age 25
                  Single mother of Isaiah my big 4 year old hes been diagnosed with ADHD,OCD,ODD and Aspbergers.
                  My dx Severe IC,PFD,VVS,IBS,Fibro,Ms,And RSD for years now although only diagnosed since 06

                  Treatments:Trigger Point Injections ,TENS, Bladder Instillations weekly and rescue,Botox Injection, bladder distension,full hysterectomy,pain management and Nerve Blocks every 4 weeks,PT,Biofeedback,Acupuncture,interstim(currently only have left side still functioning with little relief,right side became infected after 2 surgery had to have emergency surgery to remove sill having major issues with site for the last 6 months)
                  Medications Tried : Just to name a few i dont think there is anything out there i havent tried ...Enablex,Detrol La,Bitropan, Pyridum lidocaine hydrochloride jelly,soma, morphine, ms contin,all non narcotics and nsaids,currently have strong tolorance to all narcotics (i feel like a drug addict)
                  Current Medications: Elmiron (3x daily 100 mg) Hydroxyzine (3x daily 50 mg) daily Valium (2mg 2x daily) Prelief (2 at every meal) Imipramine Hcl (75mg at bedtime) Ativan (1 mg 3x daily as needed) Dualidid 8mg every 3 hours round the clock for pain,Compazine 10mg and Phenergan 25mg along with Ondansetron ODT for nausea and vomiting every 6 hrs,Atropine-Estradiol 0.2%/0.01% twice daily and Instillation of Marcaine and 2 vials of Mucosa Compositum every week, B&O Valium


                  • #24
                    I know I am weighing on this late. I have been doing Botox injections for a few years now. When I first started, I was only the second patient my doc had done this treatment to. Now, I am his longest treating pt. Lately I have not been able to pee and have had to come home w/a catheter. While not fun, I would prefer tone able to pee. I just had my injections yesterday. This time my doc left the foley in me hoping I can pass the post void test. I did not. So it had to be put in again. I am hoping I will past test today.


                    • #25
                      I need help! I had botox injections after talking to my insurance company. They said that it was covered. Well, guess what?! They denied it after it was done! Now I am appealing it. Please, if anyone has research articles supporting this, please send them to me!!
                      Please do not take my responses or posts as medical advice. I am learning too!
                      Diagnosed in 2006 (But have had symptoms since 1987)
                      Endometriosis/Ovarian Cysts/Ovarian tumor--total hysterectomy
                      Multiple hospitalizations with pylonephritis
                      "thousands" of "uti's" (or least it seems like it)
                      For my IC/Pelvic floor dysfunction:
                      Botox injections in pelvic floor
                      Physical Therapy twice a week
                      TENS unit
                      Baking Soda
                      IC Diet
                      I also have a Lapband, so my diet is even MORE limited!


                      • #26

                        I don't have IC, but I do have alot of urinary frequency. I don't have leakage though. I had 100 units of Botox in my bladder 4 days ago. My uro wanted to do 200 units, but I thought starting out with a smaller dose would be better because of so many people talking about retention issues. He also told me that I would notice a difference the next day. Well, I didn't. It is now day 4 and I am no better or worse. I called the uro's office and the nurse said that she would pass along the message to the uro to see if he wanted to add more units. For those of you who have had Botox, can you tell me please how many units you had and when it started working? I've read that it can take a few days to a week or even more, but my uro was sure that I would have noticed a difference by now. I'm thinking I should have let him do the 200 units to begin with. Any info would be appreciated. Thanks!



                        • #27
                          Ok so, I didn't get any response to my thread about Botox. I went to my urologist's office again last Friday and had an additional 100 units of Botox (200 units total) since the 100 units he did a week prior did nothing. The procedure was ALOT more painful this time around. I was literally screaming and crying. My doctor didn't anything to console me and just left the room after it was over. I don't know if he just didn't know what to say or he didn't know what to do with me crying. Anyways, I have had no relief from my constant urge to urinate. Yesterday and today, I have had to strain alittle bit to urinate and the flow kept stopping and restarting. I hope I'm not going into retention! I don't know if I'm starting to get an infection or not. Like I said, I still have the constant feeling of needing to urinate, but there is no pain that would indicate a possible UTI. Maybe the feeling is from the straining to urinate....? I called the nurse and she prescribed some Cipro for me to take just in case I was getting an infection. I'd rather be safe than sorry. Has anyone else had experience with Botox?


                          • #28
                            Re: AnYoNe TrIeD BoToX iNjEcTiOnS??

                            I have not gotten any problems with the Botox. I started with them in 2003 and until know. I get them about every 8 months and get the Botox in the Doctor office under local. The first three time I got it done with general anes.
                            I have IC, the IBS, Heartburn, High bloodpressure,thyrod problems, depression and clorties pain.