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  • Botox for the first time

    I am scheduled for Botox next Thursday. I have exhausted all other options: cystoscopy with hydrodistention, bladder instillations, Elmiron (oral & instillations), Amitriptyline and Hydroxyzine. Frequency, urgency and pressure are my symptoms. I was told by the NP that the Botox would help all of my symptoms. I am very hopeful yet scared. Has anyone else had success with Botox for IC?

  • #2
    Re: Botox for the first time

    It was suggested to me, but I am too scared to try it. Good luck and let me know if it helps.

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    • #3
      Re: Botox for the first time

      Don't be afraid of this procedure. You will be asleep and there is very little pain afterwards. You will pass some blood and of course there will be burning upon urination for a day or two but the doctor should give you pain medication and Uribel for that. You could possibly have some retention so be prepared to self cath. My doctor's nurse showed me how to do that and it is not that difficult. I have had this procedure several times over the past 5 years, usually 6 months apart. It really helps with the urgency and frequency but not so much the pain. Good luck and please post after your procedure.
      Judi W.

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      • #4
        Re: Botox for the first time

        Thank you jpwilkinson. Did you have retention after the botox? Did you have to self cath and if so for how long? That is great that the botox helps you. I am just worried.

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        • #5
          Re: Botox for the first time

          Yes I had retention on two occasions and had to self Cath for a few days. The last time I had it was in March and I did not have retension. Recommend your doctor not use more than two vials of Botox.
          Judi W.

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          • #6
            Re: Botox for the first time

            Did you get complete relief from the urgency and frequency? Was it immediate relief? Sorry to ask so many questions.

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            • #7
              Re: Botox for the first time

              Originally posted by lilaclily View Post
              Did you get complete relief from the urgency and frequency? Was it immediate relief? Sorry to ask so many questions.
              It takes about two weeks to get relief and up to six weeks to get maximum results. I believe the secret is to have the procedure frequently. I pray that you will get good results but don't be discouraged if it takes a few treatments. You are very fortunate that insurance covers it now. When I first started having it done, I had to pay for the Botox at $500.00 per vial.
              Judi W.

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              • #8
                Re: Botox for the first time

                I am having horrible urgency and frequency. Had a hydro a year ago that helped. Had another one a few months ago and it didn't help at all. My doc told me that would happen but I was desperate so I begged him to do it again. Now the urgency and frequency is so bad, up to 50+ times a day, sometimes. I see him again in a couple of weeks. I also read somewhere that if they avoid certain areas in the bladder you shouldn't have problems with retention.

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                • #9
                  Re: Botox for the first time

                  Originally posted by lindao76021 View Post
                  I am having horrible urgency and frequency. Had a hydro a year ago that helped. Had another one a few months ago and it didn't help at all. My doc told me that would happen but I was desperate so I begged him to do it again. Now the urgency and frequency is so bad, up to 50+ times a day, sometimes. I see him again in a couple of weeks. I also read somewhere that if they avoid certain areas in the bladder you shouldn't have problems with retention.
                  I would not hesitate to try the Botox treatment under the circumstances. I cannot imagine having to go that many times a day. You must be exhausted. Are you getting any rest? Since my last treatment, I can go up to four hours without feeling pressure.
                  Judi W.

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                  • #10
                    Re: Botox for the first time

                    I've had Botox twice now. Always start off on the smallest dose they suggest. The first time I had it I had 100ml put in. It took me about two months to feel any change and improvement but after that I had 3 months where my symptoms almost completely went away. I've just had my second Botox procedure about 4 weeks ago, my urologist wanted to do 200ml this time but he warned me that there's a small chance of self cath. Because of this I asked him to just do 150 ml this time. Unfortunately, since my procedure I've had nothing but pain and have had to self cath three times a day. The doctor believes the amount of Botox was too much for my bladder and I'm not emptying properly. I went to the hospital and had some tests (flow tests ad then a scan on my bladder) it showed that I was still holding 190ml after I had been to the toilet. The nurse then emptied my bladder and it measured as just under 500ml.
                    I would love to hear how your procedure went and how you're feeling
                    (I'm new to this website and interested in hearing how other people are coping)
                    I hope all went well xx

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                    • #11
                      Re: Botox for the first time

                      I saw my urologist today and I am having Botox injections done for the first time next month. My urologist thinks I'm "the perfect candidate" for it. MOST of my issues are urgency and frequency. I do have some stinging and burning sometimes, which is typically caused by something I ate that I shouldn't have, but not always. I've been following the IC diet faithfully. Instead of pain, what I feel most of the time now is itchiness. There are periods during the day when the itchiness is worse than others. Still, I'd have to say pain is behind urgency and frequency in terms of symptom priority. At first my doctor wanted to do a hydrodistension and inject my bladder with kenalog but he has since changed his mind and wants to do the Botox instead. I agreed so the procedure has been scheduled for Nov. 6.

                      "When you gotta go, you gotta go!"

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                      • #12
                        Re: Botox for the first time

                        I am having my first Botox in a few weeks and have the same questions as you and I'm wondering if you could give an update now that it's been 5 months since you had your first injection. Did you have to self catheter? Have you had relief? How long did relief take?

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                        • #13
                          Re: Botox for the first time

                          Originally posted by Taylajeanxoxo View Post
                          I've had Botox twice now. Always start off on the smallest dose they suggest. The first time I had it I had 100ml put in. It took me about two months to feel any change and improvement but after that I had 3 months where my symptoms almost completely went away. I've just had my second Botox procedure about 4 weeks ago, my urologist wanted to do 200ml this time but he warned me that there's a small chance of self cath. Because of this I asked him to just do 150 ml this time. Unfortunately, since my procedure I've had nothing but pain and have had to self cath three times a day. The doctor believes the amount of Botox was too much for my bladder and I'm not emptying properly. I went to the hospital and had some tests (flow tests ad then a scan on my bladder) it showed that I was still holding 190ml after I had been to the toilet. The nurse then emptied my bladder and it measured as just under 500ml.
                          I would love to hear how your procedure went and how you're feeling
                          (I'm new to this website and interested in hearing how other people are coping)
                          I hope all went well xx
                          Even though there was immediate improvement in my sense of urgency, and some improvement in frequency, it took 6-8 weeks following the procedure for my bladder to stop feeling like it was on LSD.

                          As soon as it began feeling better, I found out something else.

                          I keep a food & pain diary so I can try and figure out what foods cause my interstitial cystitis to flare. I eat cheese almost daily on baked potatoes, burritos, omelettes, sandwiches, pizza, soup and casseroles. But I'm finding out that ever since my botox injections, Kraft American cheese, Mozzarella cheese, Philadelphia cream cheese (the brick), and Daisy sour cream set my bladder on fire. I was eating these things just fine with no problems before my botox injections in November. The only thing I can figure is that the botox injections seem to have made my bladder super sensitive to dairy products. I don't know yet if milk, ice cream, cottage cheese or butter make my bladder bonkers. It took me a month of trial and error and elimination just to figure out that dairy is causing me a problem. This is a new and totally unexpected development. IC has already limited the foods that I can safely eat. I can't believe that I may have to add a whole food group to my AVOID list. I can make a pizza without tomato sauce, no problem. But a pizza without cheese? No way!! Pizza without cheese isn't pizza! A burrito without sour cream and cheese is just refried beans. I have tons of IC-friendly recipes that call for Mozzarella cheese and cream cheese that I may have to stop making. I'm really hoping that maybe I'll be able to tolerate organic dairy products so tomorrow I'm going to Whole Foods Market to see what I can find. If they make my bladder flare, too.... well, then I have my answer. My already limited diet is going to get pretty doggone skimpy if I have to eliminate all dairy. If I have to do it... I will, but I'll do it kicking and screaming!! I'm sure hoping that's not the case.

                          Is the botox to blame? I don't know the answer to that, but it sure looks like it to me. Right now if you asked me if I'd do the botox again, my answer would be "Um.... I don't think so". On the one hand, I did experience some improvement. But on the other hand, it may be responsible for depriving me of IC-friendly foods that I really enjoy eating. We'll see.

                          "When you gotta go, you gotta go!"

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