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  • Botox in the Bay Area

    Dr. Payne at Stanford is doing a botox study right now. I just got a call from them...

    Also found out that there is a female uro at Kaiser San Francisco who does botox injections as well. Since i have Kaiser i think i will try it.

    Does anyone know of a good uro in the Kaiser system in the SF Bay Area?

    Thanks
    Nyeema

  • #2
    Hi Nyeema

    I have had 3 sets of Botox injections, and they have helped, my Dr who is the best here in my area Sacramento, Roseville, CA is telling me that the injections are not working as well as he would like, so he is sending me to San Francisco to see a Dr. I believe the bay area has a good Dr through Kaiser. I don't know yet who the Dr is, as soon as I find out, I will let you know who it is and you could jump ahead by know who the top Dr is from the get go. I am praying that the new doctor will have some good news for me. I am so scared that this IC will take me down. I have had it diagnosed for a few years now and going to therapy and treatment with some improvement. I just had the last set of injections and each time I get them, it works a little less. The first set really helped a lot but the second and third have not worked nearly as well. I am sometimes in so much pain that I just can not cope.

    Comment


    • #3
      Getting Botox!

      Hi, thanks for your response. i have a lot of pain most of the day. hoping botox will help. i talked with my urogyno about it and she is going to do it for me next weds. it will be the first time she has done it for an ic patient. if it works, i hope it will open the door for more relief for more ic patients. will let you know how it goes.

      my doc doesn't want to inject my urethra cuz she says it may make me incontenent. i have been worried about the opposite issue. the thought of having to self catherize my already inflamed urethra is like a nightmare. (i'm trying not to think too much about the cystoscope!)

      did your doc inject your urethra? it seems the common injection sites are; trigone, neck and urethra..according to other accounts i've read.

      any info you can give me about your experience is greatly appreciated.
      thanks
      peace
      nyeema

      Comment


      • #4
        Hi

        Hi I'm from Australia and have taken part in a Botox study over here. I have had the Botox injection once a year for 3 years. It's extremely painful when you wake up and it felt like I had been stabbed in that area. The pain is excuriating to pass urine for the first few day and it is normally filled with blood. For the first two weeks it felt worse before it got better. Once settled I could hold on over night and also would only go to the toilet around 5 times a day. It's hard to urinate and it doesn't come naturally you have to strain to pass it and It could take me up to 10 mins as it drips out slowly. This was only at the start. The Botox did wonders for me and I had a normal life again. It started to slowly wear off after 8 months and the pain eventually came back. The second year I had it I recovered quicker and it was still painful. Good results only last 6 1/2 months. 3 weeks ago I started getting the feelin like I was about to leak and it was stinging. I had another round of the Botox 2 weeks ago and it wasn't anywhere near as painful. It's stressful because this urethral pain has not gone away. The specialist said the Botox was only injected in the bladder and won't fix the urethral problem. I highly recommend the botox because it can give you a break from your symptoms for a while. Good luck hope all goes well.

        Comment


        • #5
          Got Botox at Kaiser Oakland

          so, i got my botox done last weds. my urethra is finally feeling better. i have a lot of pelvic pressure and rectal pressure right now. i have a urogynecologist and she said i will know in 2 weeks whether it worked or not. so we'll see. i REALLY wish she would have given me botox in my urethra as well . about 75% of my pain is down there....but i told her, "i'll take what i can get---some botox is better than none!"

          BTW, my doc is GREAT! anyone in the east bay who has kaiser should be seeing dr. margulis

          i'll let everyone know how i feel in two weeks!

          take care
          nyeema

          Comment


          • #6
            botox can go different places

            I went to my uro today and we talked about botox She said it can be injected in the bladder OR in the pelvic muscles. The bladder sounded scary because she said one could left having to cath to pee and that would be a total disaster if that happened to me as my pain is often in the urethra and cathing hurts it. I can't imagine what that would be like to have to cath all the time, like in the middle of the night several times or anywhere you happen to be or what would happen if you had to pee 30 times a day? She said she could do pelvic muscles if the PT recommended it and that would not cause that problem. She also said it did help someone. You are all brave who do this!
            Last edited by purpleviolet; 06-28-2011, 06:05 PM.
            I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

            Comment


            • #7
              Botox and Catherization

              I was scared by the folks who had said they had to self cath after botox. I also have a VERY painful urethra. i don't tolerate caths very well--much less cystoscopes.

              I finally decided that i had to do SOMETHING about my IC. i've tried herbs, supplements, acupuncture, DMSO, and all the other drugs that all my uros have prescribed for over 30 years.

              I had heard from Dr. Payne (the authority on IC here in the Bay Area) that he had only had one patient who had to self cath after botox and the good news was that she had NO PAIN! so even tho she had to self cath for a week she had no complaints.

              I just had botox injected into my bladder wall almost a week ago. it took me almost this long for my urethra to stop burning....but i have to say that i feel better overall. I have a Urogynecologist and she said it will take another week before i know for sure whether the botox has helped or not. so i will keep you guys informed! but i do feel better. not as much frequency. not as much pain.

              keep you posted
              be well
              nyeema

              Comment


              • #8
                Thanks for letting us know

                Nyeema (sp?) Thanks for letting us all know how you are progressing. I pray you feel better. You are one heck of a brave lady. Anyone who paves the way for others is a hero.
                I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

                Comment


                • #9
                  nyeema
                  i am going to be getting botox soon. I am waitng for the date.
                  Can you tell me exactly how it went for you post op? did you leave the hospital with a cath already in? were you able to move around? how many days were you out of comission, etc.... also how often are you peeing now and did you have to self cath at all? how is your bladder pain?
                  sorry, I have lots of questions. i am just wondering how long i will need help and if i will be able to care for my three year old.
                  thank you!!
                  Thanks for your support, Jennymm
                  meds I am on
                  DMSO - will be done oct. 5
                  Lyrica 100 am / 100 mg pm
                  continous birth contol no periods, seasonique
                  urelle 3 x day
                  Clonazapam .5 mg
                  valium suppositories
                  Voltaren cream
                  pelvic floor phys therapy
                  conditions: IC, tight pelvic floor (getting better), freq/ urg, severe pain when holding it, urinate about every 20 minutes ( even at night) to get 5 minutes painfree, infertility, endometriosis, 2 miscarriages, 2 ectopics
                  PROUD MOM OF MY SWEET LITTLE BOY FROM TAIWAN, ADOPTED JUNE 28, 2008 at 5 MONTHS OLD
                  I have tried everything except interstim, botox, bladder diversion.

                  Comment


                  • #10
                    Purple violet

                    I had the bot 3 years ago when I was 20 years old. I had tried everything an had no results and was so bad I couldn't work or go out. When I heard about the Botox I was terrified abbot being paralyzed and having to self cath. The up side is that it wouldn't be forever because they told me when the Botox wears off you will be able to wee again. It has only happened to one person in Australia too. I was miserable at was at that stage where I was willing to try anything even if it had only even been done on 23 people at this stage. Someone has to be part of a study or how else would others get better. When I had the op done it was very sore down there and I had the strong feelin to wee. I kept trying an trying but I couldn't and I was in so much pain. I was convinced I was paralyzed and was in tears. It was only due to them having emptied my bladder during the op And I just had the feeling of needing too. It had great results for me but I only had bladder pain and frequency. 3 weeks ago when I had it done I had also had urethral pain. It has made me hang on for longer but the stinging burning feeling like I need to pee is still there I mentioned this to the urologist and she said it's injected into your bladder not your urethral so it won't help that feeling. So maybe do some research if that is your main problem. You'll never know how strong you are until being strong is your only option. Best of luck

                    Comment


                    • #11
                      nicole 23
                      hi, my symptoms are frequency and urgency and bladder pain. i dont think my urethra hurts but it is all so painful down there! anyway, i am scared that i will be in too much pain to self cath if i have to. when i get bladder instillations the cath hurts like hell. once its in i can handle it but on the way up, ouch.
                      did u self cath to relieve the retention?
                      Thanks for your support, Jennymm
                      meds I am on
                      DMSO - will be done oct. 5
                      Lyrica 100 am / 100 mg pm
                      continous birth contol no periods, seasonique
                      urelle 3 x day
                      Clonazapam .5 mg
                      valium suppositories
                      Voltaren cream
                      pelvic floor phys therapy
                      conditions: IC, tight pelvic floor (getting better), freq/ urg, severe pain when holding it, urinate about every 20 minutes ( even at night) to get 5 minutes painfree, infertility, endometriosis, 2 miscarriages, 2 ectopics
                      PROUD MOM OF MY SWEET LITTLE BOY FROM TAIWAN, ADOPTED JUNE 28, 2008 at 5 MONTHS OLD
                      I have tried everything except interstim, botox, bladder diversion.

                      Comment


                      • #12
                        Jenny

                        If it is bladder pain and frequency and urgency then i highly recommend it. I had Dmso and every time they used a catheter i was in so much pain so i know what your saying. Also when they would use one i would be in pain for days later. After the botox it is painful but i layed there for an hour or so holding myself down there because it hurt like hell. The key is to keep drinking water and make yourself keep weeing. I only learnt this the 3rd time. The first time i had it done i didnt want to drink because it would hurt when you wee. Now i have learnt to keep drinking and get the pain over and done with within the first couple of days. I had no catheter at all. For some reason when i had it done they only gave me 2 days off work! I would make sure there is someone home as my bf looked after me for a couple of days. The painful weeing and blood in my urine lasted about a week. After 2 weeks you will see results. I felt normal again and could go out and live a normal life holding on over night and up to 6 hours during the day. The only down side is the first time it lasted about 8 months and the second about 7. They are not sure if each time it will work less and less but my advice would be short term pain for long term gain. (Not that long but months are better than nothing). The other thing is they only like to give it to me once a year so for the remaining 4 months when it wears off im suffering again. Hope this helps

                        Comment


                        • #13
                          nicole

                          hi, thanks so much for your posts. this is really helping me feel better. i am so sorry about your pain. you are so young and have to deal with this. although i know the way u feel because i have had this since i can remember( about 4 or 5 years old). i am 38 now and am still waiting for my life to start!
                          the pain u r talking about after the botox sounds like the pain i have had after my three hydrodistensions and cystoscopies. super duper painful to pee. like buring razor blades.
                          have you had a cysto/hydro? was it the same feeling?
                          did you have to pee alot right after the surgery? if so how did you go if you had retention?
                          how long was it til you could just go without a problem?
                          after the recovery does it feel like normal pressure to pee? ( not that i know how that feels)
                          i guess i just dont understand how it will feel after the recovery is complete. how will i know i have to pee if my bladder is paralyzed and the botox is in
                          effect?
                          sorry, so many queastions. i am nervous and dont think i can hang in much
                          longer with the pain. i am still waiting for my doc to call me so i can get an
                          earlier
                          appointment with the doc that does botox . i wish they new the pain we were in.., they would hurry it up for sure!
                          thanks again, jenny
                          Thanks for your support, Jennymm
                          meds I am on
                          DMSO - will be done oct. 5
                          Lyrica 100 am / 100 mg pm
                          continous birth contol no periods, seasonique
                          urelle 3 x day
                          Clonazapam .5 mg
                          valium suppositories
                          Voltaren cream
                          pelvic floor phys therapy
                          conditions: IC, tight pelvic floor (getting better), freq/ urg, severe pain when holding it, urinate about every 20 minutes ( even at night) to get 5 minutes painfree, infertility, endometriosis, 2 miscarriages, 2 ectopics
                          PROUD MOM OF MY SWEET LITTLE BOY FROM TAIWAN, ADOPTED JUNE 28, 2008 at 5 MONTHS OLD
                          I have tried everything except interstim, botox, bladder diversion.

                          Comment


                          • #14
                            Has anyone tried a teaspoon of Baking Soda in 8 ounces of water for the burning? It sure helped me after instills when it felt like I was peeing razor blades.Baking soda is high in sodium so use with caution if you have high blood pressure. It tastes like crap but worked everytime for me ,and since I don't have high blood pressure I could use it up to 3 times a day.

                            Comment


                            • #15
                              Jenny

                              Yes Jenny thats the feeling like after having the cystoscopys. That razor blade feeling but i found it a little worse. I have had 2 of them. After i had the botox its the feeling of needing to wee even though your bladder has just been emptied. I just kept drinking water so then when i would sit on the toilet i could actually do something. Where i got it done they had to see that i was voiding good amounts and not leaving that much in my bladder. They had to see me do this 3 times in a row before i could go home (same day). To wee it could take 15 mins of agony on the toilet like you would already know the razor feeling. It would be full of blood. After about a week the feeling settles. Since having botox it is a bit difficult to wee. It is hard to explain. For me i sit on the toilet but it doesnt come out naturally. I have to push really hard and it will stop and start all of the time. This does get better over the months and as it wears off you can wee again with a better flow. For the first few weeks after the botox my first morning wee can take 15 mins to get out!!! It feels like you are so busting but it dribbles out! After a few days i was able to sleep full nights where i would usually be up about 4 times to go to the toilet. During the day i only go 5 times maximum. Oh and because of all of the morphine and tablets it can make you constipated making it harder to wee. My advice is dont let this happen! Drink lots of prune juice or take laxatives. When you wake up from the op just keep drinking water to fill your bladder and after 45 mins around you will be able to wee. I was very nervous too but it had great results and i forgot i even had ic for 7 months. After the first operation i said i would never get it done again because i was so sore. Once you see the results you will keep going back. I wish they knew what we had to go through everyday too because its so frustrating being told to come back in one month etc when you are in so much pain. All that goes through your head is one more more of this!! Hopefully this will help you. It sounds bad but isnt that bad.

                              Comment

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