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  • 1st Botox treatment -please help

    I had botox on jan 9th for the 1st time into only the pelvic floor. Because I have chronic hip pain I was in great pain after the procedure because of the position I was in. However, I am also still having pelvic floor pain from the procedure. Is it normal to still be in pain? I have not read of anyone having pain like this after botox injections. Today is day 4 post-injections, right now I am waiting for the pain to just go down from the procedure nevermind for the botox to work. My doctor said 3-10 days for the botox to work.
    "She Believed She Could So She Did"
    PGAD/IC/PFD & Hip/Leg pain
    On: Hydroxyzine HCL 10mg, Nortriptyline 10mg, Clonazepam 0.5mg, Uribel as needed, Tramadol 50mg as needed
    Things I do everyday: Drink tons of water, Breathing Techniques (4-7-8), Ice/Ice Massage, TENS Unit

    ***Diaphragmatic breathing***
    • Make a daily routine!
    • We can't control what happens to us, but we can control how we react!
    • You can't predict the future, your next treatment may work!
    • You never truly fail, if you never give up!
    • Never Ever Giving Up!


  • #2
    Re: 1st Botox treatment -please help

    Originally posted by Jamie123abc View Post
    I had botox on jan 9th for the 1st time into only the pelvic floor. Because I have chronic hip pain I was in great pain after the procedure because of the position I was in. However, I am also still having pelvic floor pain from the procedure. Is it normal to still be in pain? I have not read of anyone having pain like this after botox injections. Today is day 4 post-injections, right now I am waiting for the pain to just go down from the procedure nevermind for the botox to work. My doctor said 3-10 days for the botox to work.
    It shouldn't be too much longer now for you to know if this is going to help.



    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


    • #3
      Re: 1st Botox treatment -please help

      Hi Jamie!
      I was so pleased to see your post, as the same happened to me. September 28, 2017 was my first Botox injections into the pelvic floor. Like you, I had significant pain after the procedure. That lasted for a few days and gradually dissipated over the next 2 weeks. With my doctor’s approval, I doubled my pain meds only twice a day to get me through. Don’t forget...your poor nerves and pelvic floor were already hurting...then injections placed into them! By week 3, I would say that my pain level was 1/2 what it was before and had been for nearly 20 years. I can put up with that. I am sooo grateful that a doctor “gets it” that chronic IC can cause PFD, pudendal neuralgia, and/or pudendal nerve entrapment. Due for my next procedure January 25, and have already had my Botox mapping appointment. Sending positive thoughts and prayers that your pain is decreasing and will continue Togo down.

      Just an aside. I started with this wonderful website in the 1990’s. The IC network saved my sanity as my husband and I struggled through to find something that would help with the pain. Back then, a urologist told me I had IC, patted me on the hand and said he could do nothing for me. Perhaps I should check on my computer, he said! Happily, there is a lot more information to be had and good people here to help us all.
      Last edited by Sue68; 01-15-2018, 09:35 AM. Reason: Addition
      Sending positive thoughts and prayers,

      Sue68

      Comment


      • #4
        Re: 1st Botox treatment -please help

        Sue you have no idea how much your reply means to me. Thank you so much. There is not much updated posts about botox injections and it feels so good to finally talk to someone that had them. Fortunately, my pelvic pain is almost back to my normal pain, I did increase my pain meds over this week. I have a follow up with my dr on wednesday just to see if the botox did anything yet and if I should start pelvic floor PT again, but I know it is still early to tell. I have stopped looking up posts online as sometimes they can be very depressing, it is good to hear that you had some success. I heard that the 2nd round of botox usually helps more than the 1st round. So if the 1st helped you the 2nd may be even better for you! I also heard that going to PT when the botox starts to work in very effective in pain control. PT in the past was too painful for me especially with my hip pain combined with everything else. My dr says if the botox gets rid of some pain I should go back to PT and it should be less painful and help me get my muscles to where they should be. Which might even decrease the need to keep getting botox in the future. So far I don't feel a difference yet but I am hopeful! I am in my early 20's and am so grateful that I am living in a time where there is so much innovation happening, especially in women's health.
        "She Believed She Could So She Did"
        PGAD/IC/PFD & Hip/Leg pain
        On: Hydroxyzine HCL 10mg, Nortriptyline 10mg, Clonazepam 0.5mg, Uribel as needed, Tramadol 50mg as needed
        Things I do everyday: Drink tons of water, Breathing Techniques (4-7-8), Ice/Ice Massage, TENS Unit

        ***Diaphragmatic breathing***
        • Make a daily routine!
        • We can't control what happens to us, but we can control how we react!
        • You can't predict the future, your next treatment may work!
        • You never truly fail, if you never give up!
        • Never Ever Giving Up!

        Comment


        • #5
          Re: 1st Botox treatment -please help

          Jamie,
          I’m glad to help...checking in here 6 months ago, nobody was using Botox for/ in the pelvic floor. It’s good to hear that the pt helped you. Three series of 10 or more pt treatments did nothing but increase pelvic pain in my case. Pain level never decreased as a result of pt, but since doctor recommended.....I went. My new doctor has diagnosed pudendal neuralgia and suspects pelvic nerve entrapment, which makes sense. New information suggests that those whose pelvic pain increases from pt and Kegel probably have one or both of those diagnoses. Be good to yourself right now...make sure to stay away from triggering events/foods/drinks.

          That’s what I am doing right now as the Botox injection has worn off. So, back to sitting tilted back, standing only, and my all time favorite remedy, sitting on ice packs! It’s good to know that there are at least 2 of us trying these injections in pelvic floor. Others have them in the bladder wall. Maybe our experiences can help those with IC who have PFD and also those with PFD from other causes.
          Sending positive thoughts and prayers,

          Sue68

          Comment


          • #6
            Re: 1st Botox treatment -please help

            Hey Jamie, tried to PM you, but got message that you need to remove some pms before it will accept mine.
            Sending positive thoughts and prayers,

            Sue68

            Comment


            • #7
              Re: 1st Botox treatment -please help

              I will clear my inbox. Oh sorry you misunderstood. PT did not help me, it also only caused me extreme lingering pain I went for about 9 months. So far everything I tried nothing has been able to lower my pain at all. I was saying that if the botox works, my dr said I should go back to PT because it would be easier this time and he thinks I need it. Combined with my hip pain it is hard to do any activity or even stretch which is why I think PT was so bad for me. My dr things that my pelvic floor is what is making the hip pain worse. Hopeful the botox works, as I have already tried so many treatments. But I am so happy to have also found a great dr that I can trust and also is up to date on treatment options. Everyone thinks I also have pudendal neuralgia, but I had a nerve blocks with the botox injections and it didn't give me any relief for even a second, so I guess I don't have it. Even if my muscles are impacting the nerve based on the nerve block the nerve itself is not causing the problem I feel in my case, my dr said I would have known right away after the block if it helped or not. I will see what my dr says on Wednesday.
              "She Believed She Could So She Did"
              PGAD/IC/PFD & Hip/Leg pain
              On: Hydroxyzine HCL 10mg, Nortriptyline 10mg, Clonazepam 0.5mg, Uribel as needed, Tramadol 50mg as needed
              Things I do everyday: Drink tons of water, Breathing Techniques (4-7-8), Ice/Ice Massage, TENS Unit

              ***Diaphragmatic breathing***
              • Make a daily routine!
              • We can't control what happens to us, but we can control how we react!
              • You can't predict the future, your next treatment may work!
              • You never truly fail, if you never give up!
              • Never Ever Giving Up!

              Comment


              • #8
                Re: 1st Botox treatment -please help

                Jamie,
                Rereading your posts, I see that pt did not help you either. Hmm, I can only go by my 1 experience with Botox injections. It took nearly 3 weeks for me to really notice a decrease in pelvic pain..and the first week after the procedure was quite pain filled. We are all different, so perhaps your doctor expects your treatment to kick in sooner. By the way, the nerve block they gave me to do the procedure did not give me any relief from pain. I was so surprised that as soon as I woke up the pelvic pain was much worse...I didn’t expect that! Hang in there and keep your chin up, Jamie. You will find something that works for you..and it just may be these injections.
                Sending positive thoughts and prayers,

                Sue68

                Comment


                • #9
                  Re: 1st Botox treatment -please help

                  Hello everyone,

                  I am just giving an update on my pelvic floor botox injections since there is not many recent threads I wanted to make sure I let everyone know how it is going. It has been 2 months since my injections. I have gotten no side effects from the injections. It doesn't make your body feel numb or anything, your sensations are still the same as before. For me, they did not make a difference on my pain. But don't let my update make you depressed because I have chronic hip pain that also has a great impact on my overall pain. So I started my 2nd around of pelvic floor PT about a month ago. We are not doing much internal and mostly external but that is because of all my hip issues. I can not have anyone touch my hamstring/hip because of the pain or lay on my stomach or sides so we are very limited to what we can do at PT. My PT thinks that the hip pain is coming from my core muscles and pelvic floor (I already had full r/o of hip pathologies). She said my muscles from my pubic bone to diaphragm are very tight and knotted up together and that is pulling on my back'hip, causing some of the back pain. At my appointments, she does mostly visceral mobilization and internal works on the obturator internus ( for the hamstring pain). Also my dr has even given me diazepam (valium) to use as a suppository every morning and orally once at night before bed(and we stopped the clonazepam). He said that will help with the pelvic floor spasms. Another great thing is that my PT and dr work closely with each other, which is different than what I did in the past and I think it makes a big difference for your PT to keep active communication with your Dr. So far this time around in PT I make sure to let my PT know everything and if I know something will cause me a lingering flare I let her know ahead of time (which in the past I would not do). So for the 1st time I am not leaving PT with flares! I also have lidocaine gel to put on vaginally and that helps a lot too. So far I actually got seconds of improvement in my pain, which is a lot for me since I have pain at around a 7-8 level for 5yrs nonstop with not one thing giving a dot of relief, until recently! (And I have had loads of PT/injections/ you name it). So I would say I am headed in the right direction!!!!

                  to encourage you, I did 2 rounds of regular PT and now my 2nd round of Pelvic floor PT and who would think anything would be different by the 4th time? Well it is! Healing takes time and involves a lot of trial and error, sometimes you need to revisit some situations and start again, Get a provider that has a different mind set and views things in a different way. Most important is to keep communication with your Drs and PTs! If something makes you flare don't do it, find another way to approach the problem. You can only fail if you give up, so never give up!

                  PS- so what I do now is message out my abdominal muscles every day and sometimes my sister does it for me because its hard to do by yourself. My PT told me to do that everyday. If you are seeing a PT you should ask them to start doing it more and/or teach you how to do it on your own. I find it to be a big source of my issues, as I believe whatever impacts your core, impacts the rest of your body. Also I do breathing exercises everyday, psychologists have told me that diaphragmatic breathing is the best one for people with pain you can look up different types. Your fascia is one continuous layer of tissue covering all the muscles in your body !!!! So if your find yourself having minor pains/sore spots in other areas of your body it may be from the fascia at one part pulling on another. Which is why I think it is so important to make a routine of all of these things and can take less than 10 mins out of your day and make big impacts over time!

                  Jamie
                  Last edited by Jamie123abc; 03-09-2018, 07:04 PM.
                  "She Believed She Could So She Did"
                  PGAD/IC/PFD & Hip/Leg pain
                  On: Hydroxyzine HCL 10mg, Nortriptyline 10mg, Clonazepam 0.5mg, Uribel as needed, Tramadol 50mg as needed
                  Things I do everyday: Drink tons of water, Breathing Techniques (4-7-8), Ice/Ice Massage, TENS Unit

                  ***Diaphragmatic breathing***
                  • Make a daily routine!
                  • We can't control what happens to us, but we can control how we react!
                  • You can't predict the future, your next treatment may work!
                  • You never truly fail, if you never give up!
                  • Never Ever Giving Up!

                  Comment


                  • #10
                    Re: 1st Botox treatment -please help

                    Thank you for the update. Sharing experiences helps us to make treatment decisions.


                    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: 1st Botox treatment -please help

                      Sorry the botox did not help. I am sure you are on top of it all as usual. I was hoping this treatment course would give you some relief. Having IC and hip pain sucks....pardon my language.

                      Comment

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