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MS & Botox

On the recommendation of my neurologist, I had  Botox treatment last week and may now have a very young looking bladder after receiving 200 units through injections.  This is a relatively new procedure approved for MS and neurogenic bladder problems and I know there has to be at least one more person reading this who has had this done or at least suggested by their doctor.  This procedure is used for people with spinal cord injuries and is also done on men, so this story is for everyone.

This blog may be TMI – Too Much Information – for some of you, so feel free to stop reading now, but I promise I am not getting into graphic details. I’m sharing this with those of you who make up the few thousand close friends here on MultipleSclerosis.net pages, because someone needs to be talking about the help available for this very common MS problem.  It is estimated 80% or more of us have some type of bladder problem associated with the MS, but you will find very few first-person accounts of the problem.

The back history for me is my sudden urges, the leaking and the Niagara Falls type of waterfalls, created a mixed bladder habits picture for my Urogynecologist.  Yes, that is a real medical specialty name and not made up; she is a combination Urologist and Gynecologist and has been my doctor for almost twenty years, well before I was diagnosed with MS and needed a Urologist.  I had serious urinary retention but also had urgency and frequency.  The signals between my bladder and my brain couldn’t decide what needed to be done and consequently I spent lots of time either in the restroom or making sure I knew where the nearest one was located. I was spending lots of time trying to decide if I was coming or going.  It was pretty much normal for me to be in the loo at least once every waking hour.

I’ve tried a variety of different drugs for the bladder – you know the ones that are advertised during the evening news that always end with pictures of smiling, active men and women.  Those drugs helped in small ways, but the overall problem still existed.  I tried bladder training, but that did little good because my problem is not a weak pelvic floor.  Then I developed a string of  UTI’s because of retention, developed sepsis, and began doing intermittent self-catherization to be able to void completely and hopefully reduce the chance of further infections – I like my kidneys being healthy and I want to keep them that way.

Even with all of these tools, I was still a slave to the restroom; being in there a dozen or more times a day was tedious at best and a damn nuisance most of the time. It’s hard to focus on a show or work or taking a walk when your bladder and brain are having their nonstop discussion and won’t keep it to a whisper.

I won’t get into the tedious details of the procedure but let me say it really wasn’t difficult – besides I was totally knocked out and I wouldn’t have known differently.  If you want more details you can always Google the topic and there is plenty to explain the technical side, including YouTube videos of the procedure.  This took place in an outpatient surgery center, I was given a general anesthesia, and the Urologist then injected my bladder with 200 units of Botox about 30 times.  I was in recovery for about an hour and then I was sent home with a small prescription for Vicoden if I needed something for pain.  I took one the first day and didn’t need any after then. After about 24 hours, I had no symptoms that any trauma had taken place.

The Urologist who did my Botox procedure is at Ohio State University, and specializes in male urology problems, but on that day he had several of us women to treat.   There are still not many doctors doing Botox for the bladder and this doctor says he is surprised by that because it is a relatively simple procedure.  He says the Botox can take up to two weeks to make a difference and will last on average about six months.  Case histories show it being effective for as little as four months and as much as nine months.

For me, the difference was almost immediate.  I woke the next day with little discomfort.  Best of all, my bladder was quiet – it had stopped its non-stop chatter with my brain.  I now can go several hours and realize that I haven’t even felt the urge to go.  What a major difference.  Three days after my Botox, we went to an outdoor concert with friends –  it was a great evening and I even drank a 20 ounce beer.  The music was wonderful, the weather was perfect, but even better was I lasted from my home, door-to-door, almost 5 hours without needing the restroom. That might not be a Guinness Book of Records entry, but it is certainly an award winning length of time in my book.

If you are like I was and allowing the location of the nearest restroom to rule your routine, you might consider talking to your doctor about Botox.  The age lines in my face could have used a bit of this wonder drug, but my bladder was definitely the best choice for improving my quality of life. I’m glad I had this done and won’t hesitate to do it again and again, as needed.

Wishing you well,

Laura

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Wendy
    4 years ago

    I received botox for dystonia (involuntary cramping) in my right hand for over 10 years. I don’t currently get those injections, but having a troublesome bladder with a variety of issues, this information has made me think about trying botox for my bladder. I always must find a restroom “the moment” I feel any urge or it’s h** to pay! Thanks for this article. I knew doctors were using botox for bladder problems, but this is the first time I’ve actually read an article written by someone who has had the procedure done. Thanks to everyone else who shared their positive experiences too.

  • Laura Kolaczkowski author
    4 years ago

    Wendy, i have now had it done three times. It seems to remain effective for me about 10 months, but for others it can be less or more. By all means, do talk to the urologists about this option. The website for the drug manufacturer has more information and also a directory of doctors who are trained in this procedure. Let me know if you follow through and share your experience. -Laura

  • Patches
    6 years ago

    I havent ever experienced enough of any ONE symptom to consider addressing treatment. I am guessing every ‘accident’ I experience does need to be addressed by a doctor either way. Just YESTERDAY I had THREE accidents…this is not the first, but the accidents are very few and far between, either way, guess its about time to have it ALL addressed…not saying I want to experience more…thank you ALL for sharing, thank you for letting me share as well. 🙂

  • Laura Kolaczkowski author
    6 years ago

    The first thing I would do if these are infrequent, is get checked for a UTI. Those buggers will create problems like what you describe without many other symptoms. Then talk to your docs about other options. My point in sharing is we don’t have to be miserable when there are new ways to control incontinence. best, Laura

  • OREGONBOWGIRL
    6 years ago

    Thank you for sharing. I recently attended an outdoor venue & decided after the several trips then not being able to “hold it” because the line was so long I would make a point not to do those things anymore. Thats not fair, this gives me some hope!

  • Laura Kolaczkowski author
    6 years ago

    Sorry, I am just now seeing your comments- have you arranged a chat with a doctor yet about this? You can locate the doctors who are trained to do this through the Botox website by Allergan. Let me know if you have trouble finding it.

  • Jessica
    6 years ago

    I’ve been doing this “life-changing” procedure for almost three years! I don’t go under anesthesia anymore but have the procedure while fully awake in the Urologist office. It only takes about ten minutes of pain and then I am up and around for the rest of the day! I have to self-catheterize in order to “go” since we found through trial and error that nothing helps me unless my bladder is completely paralyzed. But, hey, I can go places for five hours without even needing a bathroom! So bring on road trips, long movies and parties at friends houses! (These were all impossible for me years ago)!

  • jbain510
    6 years ago

    I totally agree. This is a life-changing procedure! I never had anesthesia. I was in a study at the University of Maryland for almost 5 years. The study ended last year. I will be getting my next procedure Sept 3 from a new doctor. She trained with my “study doc.” I don’t have a toddler with me to use as my excuse for locating a bathroom, because I no longer need an excuse.
    I recommend this to anyone with a bladder problem!

  • Laura Kolaczkowski author
    6 years ago

    Jessica, I will move on to try it without anesthesia eventually. I think that would be better than the general anesthesia and needing someone to drive me home. The freedom is difficult to understand uness the reader is like you and me and constantly calculating the next required pit stop. Thanks for sharing, Laura

  • Pops
    6 years ago

    Sounds good. I will definitely talk to my Urologist about this once I get my prostrate removed and get rid of the cancer. I have had identical bladder problems for more than twenty years and also have to self cath to empty my bladder. I do drink a lot of water every day. It helps to keep the bladder flushed out and I haven’t had a UTI in more than 5 years. I do have to be careful though and plan some things on restroom availability. I am a guy though and have taken advantage of a quiet spot to water a tree…..Pops

  • edinns
    6 years ago

    Looking at it from a male point of view. I have had the bladder botox done several times and would recommend it to any MS sufferer

  • Laura Kolaczkowski author
    6 years ago

    Thanks for adding the male voice here – I had ready it is effective for both sexes but know no man who had it done before you spoke up. Thanks!

  • Alison
    6 years ago

    Are there any side effects?
    This sounds almost too good to be true. Is it covered by insurance? Do you need to get put under every 6 months to get more shots? Sorry so many questions.

  • Laura Kolaczkowski author
    6 years ago

    Alison, my insurance did cover it. I have a friend who has this done in the doctor’s office until a local/numbing anethesia. She says it is slightly uncomfortable for a few seconds with each injection point but that it stops pretty quick. There are some people who don’t have good luck with this and only do it once. There’s no real way on knowing until you try it. The down side is once the botox is in your bladder, there is no way to remove it except over time.

    BTW Botox is also used in MS for dysphagia(swallowing and speech problems) and limb spasticity. Pretty amazing drug.

    You might talk with your doctor about getting a referral and then discuss it with the urologist in detail.

  • Kim Dolce moderator
    6 years ago

    Laura, I’m so happy for you! Although I’m taking Vesicare for a spastic bladder and it gives me similar benefits, it is good to hear a Botox success story just in case I need to move on to a plan B. I hope the injections remain effective for you for a good long time.

    Kim

  • Laura Kolaczkowski author
    6 years ago

    Thanks Kim. One of the best things is I no longer have the chronic dry mouth that the anticholergenics seemed to give me, regardless of which one I tried.

  • Kathy Lacour
    6 years ago

    Yes, I also had my bladder “botoxed”, and I couldn’t agree more on it’s benefits. Everyone with MS bladder problems should look into it.

  • Laura Kolaczkowski author
    6 years ago

    Thanks for adding your experience to the discussion here, Kathy. I am not surprised how few people know of this Botox use, since this is usually a conversation people don’t have publicly. I want everyone to know that there is this option that might be right for them. best, Laura

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