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My horrible Botox experience

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  • #16
    Sorry to hear you had such an ordeal. The one thing I can stress is that you need to have general anes. when getting botox injections. I know alot of drs think it's ok for locals but it really doesn't help the patient. My dr right off the bat said he would only do a general because he wanted me to be comfortable. He is a very caring and sweet dr. I really had little pain the day of the procedure. The general helped me sleep most of the day away comfortably. I had pain meds so I did take them when I needed to but not the first day. Don't get discouraged with this happening to you. The botox takes 7-14 days to realy take effect. Mine was more like 16 days but it varies. My biggest problem is pain with my IC so that wasn't really helped but freq/urg was down dramatically. It was a slow process to detect at first but I noticed I was able to sleep more and have less trips to the bathroom.
    I can only imagine how painful and scary it must have been for you. Patients are already scared to try botox they don't need drs who don't have their patients best interest at heart. For anyone who is thinking about botox I would recommend it. It helped me as much as it could. My bladder in addition to my IC is dying so I'm sure that's why it didn't help me as much as it should've. You have to find a good dr to do your botox and discuss what to expect. You should expect to rest alot afterwards because even though you weren't cut open it was still surgery. I had really bad spasms if I pushed myself too much. I encountered at bit of retention but it was easily helped with flomax/cardura and I also let the faucet run to help me void. You have to remember your bladder is already diseased and poking it with needles irritates it. You need to let yourself heal. My IC is on the severe side so for those of you who aren't as bad as me you might not have as much pain (during the healing process)
    There really isn't a set amount to use for injections. It is up to your dr but the mosre you use the more likely of retention. It's better to go conservative the first time and do more the next time. I had my second botox done 5 months later. The second round lasted about 7 months or so. Now some are helped with pain,freqency and urgency so it will depend on the person. I wasn't helped with the pain part but some are. I happen to be an extreme case. I had both my botox injections in my bladder not in the pelvic floor (2005). I'm not sure how it works in the pelvic floor but my dr felt that the risk was too high. My dr has been there from the begining (May 03) and wouldn't give me anything he wouldn't give his own daughter. Since Botox I've tried everything under the sun. The most resent was Cyclosporine A which helped alot but my body couldn't handle the side effects. For more info on CYA you can look at my posts in that forum or PM with questions. I just don't want people to be afraid to try botox. What you went through was horrible and I would look for a new dr. You should've never had to go through that. I live in Chicago so if someone is in need of a good uro let me know. I've seen a handful of the top IC drs but I still go back to this one. I've been so lucky to have found him and I really feel bad for those of you who have drs who aren't taking better care of you. Well this was going to be a short post but oh well. Feel better


    • #17
      Just wanted to say that in light of what happened at the beginning of the post, your post is awesome. Very well said, objective, and a great resource for those contemplating Botox. Great job!!!! :woohoo:

      (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

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      I have learned all about life in 3 words: It goes on! :D--Robert Frost
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      "Spirit is an invisible force made visible in all of life"--Maya Angelou
      "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]


      • #18
        Thanks Babs


        • #19
          I had the surgery in Tampa. I live eight hours from Tampa in middle Georgia. The ER doc is married to my regular doc. This town is really small. I can't seem to say that enough although I hate to admit that people in this town are all related to each other. Anyway, the ER doc is the one who prescribed Methadone over the phone. If you haven't been in an accident or you aren't currently having a heart attack the ER doc sends you home.
          I still have black and blue bruises. I am soo sore. It hurts to move. I have an appointment with my regular doc tomorrow afternoon. I will ask her to look at the bruises then.
          My 18th birthday was today. I spent most of the day sleeping. I didn't have a party or a cake. I'm too tired and worn out to care. I can't imagine what I will do on my birthday when I turn 50. I'll probably be a grouchy old lady by then.
          I feel worse then I did before the Botox. I hope I get some relief from it. I hate the side effects of Cyclosporine-A but it looks like I will be trying that next.


          • #20
            Hey, PM me the name of the urologist who did your botox.... I'm 19 and I've had three urologists in Tampa and two of them really creeped me out (I now see a female one that's awesome).... I'm really curious if it may have been one of them
            current meds:
            cytotec 200mcg twice daily

            ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

            dx: hashimoto's thyroiditis 1998
            dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
            dx: endometriosis 2003
            dx: innapropriate sinus tacchicardia 2005

            meds tried but failed:
            elavil (6months)- severe tachycardia
            elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
            a bunch of others

            Me and my best friend's baby (also my Godson!)


            • #21
              I think I found a new uro. Her name is Dr. Boyd and she practices in Savannah, GA. My appointment is on April 16. I hope I have better luck this time. She will be my fifth uro/urogyn since July. When I called to make the appointment the receptionist asked if I was in a lot of pain, I told her yes and asked how she could tell. She said my voice was really shaky. So much for hiding the pain from people who don't know me.
              I still feel horrible. My bladder hates me. My bruises are now fading to a light blue hue. When I saw my regular doc today she couldn't believe what happened. I have this weird vaginal discharge but my doc didn't want to do an exam because she didn't want to inflict any more pain. I appreciate the gesture but now I have to take three more meds in addition to my regular meds. One antibiotic, one med for bacterial vaginosis, one med for a yeast infection. All of the Zofran in the world couldn't help me today. I have a PhD in projectile vomiting on a good day.
              Now I only have to get over my fear of new docs.


              • #22
                I am so sorry you had a bad birthday.. ((((((((((((hugs))))))))))))) make up for it next year
                'The will of God will never take you where the Grace of God will not protect you.'


                • #23
                  This is off topic, but I wanted to commend you young ladies (Catlover & sacausa) for going ahead and switching doctors and questioning doctors and asking about new doctors. It took years of misdiagnoses for me, and many others, to start to wonder whether my doctor's word was not the gospel truth. I am sure your treatment is out there somewhere, and I am sure with your persistance you are certain to find it.
                  Last edited by cia; 03-27-2007, 09:52 AM.
                  I was born with one ureta not attached to it's kidney, I've been poked and prodded for so long. I never had "private" parts. I had constant infections and took low dose preventive antibiotics into my teens.

                  DX with IC July 1993 after seeing 3 different Uro's and finally switching Primary care doctors and affiliated hospitals.

                  I have 2 beautiful daughters, the oldest has been in heaven since she was 14 when she was hit by a car The youngest is 20 now. She has had one UTI. She went into complete panic that she would end up like me. Now she has some idea of what the pain is like. Poor kid has been forced to know where every bathroom in Disney World is.


                  • #24
                    Read - Important!!

                    i can't believe the horror you went thru...

                    i can't stay on long, as the baby needs me. but i wanted to tell you a few things:

                    TAKE PICTURES OF THE BRUISES ASAP!! digital camera is best, but if you don't have one, buy a cheap disposable and TAKE PICTURES. find ANYONE to take them if you can't yourself!! i know it sounds horrible but you need DOCUMENTATION of the bruises as they will heal (the physical much quicker than the emotional ). if you DO decide to seek legal advise the pix will be invaluable.

                    GO to another er and get checked out.

                    if you truly feel you were raped, REPORT IT ASAP. if you need to talk, pm me and i will gladly respond. i was raped in college and never reported it...i really wish i had now, but the statute of limitations has expired .

                    take care of yourself. i am thinking about you.

                    (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

                    Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

                    I'd like to be on House, MD as a medical mystery.

                    Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

                    Connor & Mommy by the tree:

                    Connor with happy!

                    I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

                    Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

                    I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!


                    • #25
                      Happy Belated Birthday!!! Sorry to hear it wasn't the enjoyable day it should've been.

                      In reguards to the bruises you have it might be from the procedure. They might have grabbed your legs to maneuver during the procedure. It sounds like your dr wasn't familiar with botox or how it's done. The fact that you're having a weird discharge might be from being in the hospital. There are germs all around and after having the botox your more susceptible to infection. Did you get the injections in the pelvic floor or just the bladder? I was told it was too risky in the pelvic floor and if you did that might be where your problems are coming from. I feel so bad to hear about everything you went through. I'm here if you want to talk about Cyclosporine A or any other treatments. I've done them all and I mean all of them. BCG is the only one I haven't done but if you read the research you wouldn't either. I'm 25 and I know the struggles you're going thru. I had to leave college a few years ago to take care on my IC full time. I pray that all the bruises and other stuff are just the results of the procedure done improperly. Take care. Feel better Soon.


                      • #26
                        I havn't been online for a while so i am sorry i havn't been around to be of any support. Like the others, I am so sorry to hear what an ordeal you have suffered. I had botox twice, both using no other anaesthetic than some numbing gel. It hurt a lot but was not unbearable. Very nearly unbearable though. I know where it is injected may make the difference whether it can be done this way but if at all possible, and you get some relief and want to redo the procefdure at a later date, perhaps this is an idea you could consider to reduce the stress of ever experiencing what you have been through again. My botox was injected into my urethra and the opening of my bladder. The second time, i self medicated with a generous amount of my pain meds (my GP suggested what would be a safe dose) and it was much less painfull but i also think there may have been some residual effect of the first botox that reduced the pain.
                        I think the advice everyone has given you is very sound, please listen to it. For many of us, young girls like you, feel like daughters to us and we wish we could protect you from things such as this.
                        Warmest hugs and in hope that you are healing, both physically and menatally from all you have endured


                        • #27
                          catlover 2 How did your appt. with your new doctor go??? I have been thinking about you. I hope you will be feeling better soon!!!!!! I will be praying for you.

                          Deborah Bush
                          I have IC, the IBS, Heartburn, High bloodpressure,thyrod problems, depression and clorties pain.


                          • #28
                            I saw Dr. Boyd on Monday afternoon. She confirmed the diagnosis of severe IC. She also said that there is nothing else she can do for me. She referred me to Dr. Evans in North Carolina. I haven’t decided whether or not I will make an appointment to see him. I still can’t believe that I went from no IC to severe IC in less than one year. I’m still in denial about nobody being able to help me. I don’t qualify for the CellCept clinical trials because the urogyn who did my cysto with hydro last July didn’t see any Hunner’s Ulcers. I’m not ready to have my bladder removed. I would like to try some stronger pain meds but my PCP isn’t comfortable prescribing anything stronger than Lortab and I can’t seem to get a pain clinic to accept me as a patient.


                            • #29
                              Catlover1 What is the reason that the pain doctor wil not take you as a patient?

                              Deborah Bush
                              I have IC, the IBS, Heartburn, High bloodpressure,thyrod problems, depression and clorties pain.


                              • #30
                                Each pain clinic I contact usually gives me a different reason. The common reasons include the docs don't know about IC so they can't treat IC pain, I'm 18 and 18 year olds do not belong in a pain clinic, and the pain meds would prevent me from continuing to take college classes.