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Botox 4 weeks ago-my progress

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  • #16
    I was in a Botox talk yesterday, and I understood that Botox is helping with the OAB because helps stoping the bladder contractions

    So I think that the retention that you mention is because of this. I never have had more than 50 units inside my bladder

    I´m so sorry!!!, and when are you going to have any respond from the insurance company???
    Are you going to assist to San Antonio???, I do, the problem is that I don´t have hotel yet, in which are you goig to stay???

    Louise: I never have had the side effects that you mention, so I hope you will never have them again!!!, in fact, is very strange that I have an UTI

    I continue with my pelvic floor contracted!!!!



    • #17
      Hi Flore,

      I am still going to San Antonio. I have an extra room booked, let me know if you want it and I will see what needs to be done to change the reservation over to you. I need to cancel the room if you don't need it by Monday.

      Email me at yahoo address when you get a chance.



      • #18
        Botox 4 weeks ago-my progress

        Hi. Now it's 5 weeks and I'm happy. The retention is wearing off and my period is due and I'm not needing any pain killers.

        I hope this continues to improve and lasts a while.

        I spent almost $2000,00 of my own money and the surgery was much more of an ordeal than I expected.

        CINSIN and Flore, I hope all goes well.



        • #19

          Indy I think your retention will get better. I have been getting 200 unites of botox in my bladder at a time. I had my last botox done in Jan and will have another one done in July. They have been helping my urgerncy & frequency. I am doing 3 year trail study with doctor in Miami. I hope you feel better. Hi Cindy and Flore!! I hope you all are doing great. Deborah
          I have IC, the IBS, Heartburn, High bloodpressure,thyrod problems, depression and clorties pain.


          • #20
            Botox 4 weeks ago-my progress

            Hi. It's now been 6 weeks. I had 10 days of bliss, with the retention managable and almost no pain. I was eating a lot of things I had sworn off and peeing less than 10 times per day.

            Then, something went wrong.

            Is it possible to have flares on BOTOX?

            I don't have an infection, I'm checked once a week.

            I do have severe constipation. After I go, the spasms start up.

            Maybe I have added to many foods too soon.

            I'm really getting upset-after getting a taste of being normal again.

            Any one with any ideas please!


            • #21
              Hi Indy,

              Botox is not a "get out of jail free card". If you eat things you are not use to eating, not only will your bladder let you know but so will your colon. Colon spasms can make you feel like you are having bladder spasms.

              I have been able to do more and eat more since Botox but in moderation. Somethings will still cause flares but they are much more manageable now. I know what will cause flares and pre-treat before the symptoms.



              • #22
                Botox 4 weeks ago-my progress

                CINSIN, thanks for your reply.

                The first thing I am going to do is get off the elavil which was causing retention and constipation even before the botox.

                I guess I should have known better than to add to many foods back at once.

                I also added back calcium citrate and cystaq and think one of them could be bothering me. I thought the cystaq which I took for years before the 1 1/2 year flare would help my lining heal.

                So, you have given me hope that my Botox hasn't just worn off after 6 weeks and to get out of my denial that I am cured.

                It seems the most important thing is to prevent constipation.



                • #23
                  Hi to everybody!!!

                  Cindy: about the hotel, I have the reservation, anyway l sent you an email, did you receive it??

                  Deborah: Is nice to hear from you again!!

                  Indy: After Botox IN MY CASE is very common that I am able to eat more things than before it, only 2 things I can´t eat (strawberry and pineapple), but I have to be very carefuly with the food
                  I use to have flares after Botox, but like Cindy are managables
                  And after 2.5 years trataing me with Botox, now, I know that when I begin with lots of spasms after evacuate and void is time to begin in the next injections

                  I began with more frequency at night, and this is anoter symptom. I have often pain, so.... In June is going to be 8 months since my last injections, so maybe is going to be a good idea for the next injections (and the hydro and electrofulguration)

                  So Indy, take cara of the food!!!

                  Last edited by Flore; 05-12-2005, 01:55 PM.


                  • #24
                    Do any of you who have had Botox take other IC meds? I am wondering if this would be a good time to start elmiron since it takes so long to work to actually try to repair the lining or would it make the botox wear off?

                    Do you find you need other meds?

                    I'm getting off elavil slowly and trying ambien for sleep and klonopin and atarax.


                    • #25
                      All I take daily is Bactrim for reoccurring UTI's. Other then an antibiotic I take Vicodin as needed and Valium only to manage after sex flares or if I have to ride in a car for more then an 90 minutes. But I don't need both daily - just to manage my symptoms when needed.

                      I took Elmiron three times and it didn't help but we have figured out that most of my pain is muscle, nerve and tissue pain. I probably have more vaginal and urethra pain and don't have much bladder irritation and burning.

                      I work with support groups and have seen where Elmiron has worked miracles but mostly with those who have irritation and burning.


                      • #26
                        I take daily Atarax at night

                        I have pudendal nerve pain too, so I was taking Neurontin, the problem was the head ache that I had everyday so I´m taking Lyrica (is better and soft than Neurontin, and the maker is Pfizer too), the prooblem with this is that causes me retention, so I try to take only with pain

                        I have irritation and burning inside the bladder so I have heparin and xilocain instilations too. And I use to take Bladuril (I don´t know the name in USA)


                        • #27
                          I had botox done about 4 weeks ago now. Mine was for severe pain. I was living on Morphine and had been for the last year. Pain has improved aabout 60% but I am permanently catherterised. Not sure when that is coming out. How long do you all find the botox lasts


                          • #28
                            I´ll have my injections next June 15, and I can´t wait, because the pain until I´m urinating is terrible

                            The last time that I had the injections was 8 months ago, so is very important to me to have them again!!!!

                            My dr in this time is going to inject the trigone, but the injections are going to be intra-mucus (????) I don´t know how can I say this, but my dr says that is a new technice and helps to relief the inflamation in the trigone. I will have too in my pelvic floor via vagina, in the urethra and he is going to see if he injects my pudendal nerve too

                            Nics: In the beginining Botox lasted in me 4 months, and now lasted for 8 months


                            • #29
                              WOW! I had no idea Botox would last that long. Where exactly does a Dr inject the Botox? Or, is it like an instillation? I've read that for some it does help pain considerably. Has anyone else found this to be true?


                              • #30
                                Botox 4 weeks ago-my progress

                                I'm 2 1/2 months into the 300 cc directly into my bladder.

                                I have had several flares lasting days and they increase the retention I already have.

                                I went to get cathertized and after I thought I was empty, he got out 2 full beakers! The pain is from being full and staying in my bladder and irritating it.

                                When will this retention wear off? I had thought I noticed it getting better until I had a big flare from eating parmasian chees by mistake. I've also had flares from constipation and straining.

                                There are some really great stretches of time where I am so happy with it but I don't understand the flares!

                                It's impossible to reach my doctor by phone and I don't have an appointment until next month.

                                I'm going to see a pain doctor about an epidural.