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Warning: this post concerns incontinence, a subject that disturbs some people. It disturbs me, too, but I’m in the process of convincing myself that we human beings could support each other better if we talked about it.
So I’ve been telling people about my recent experience: A couple weeks ago, I received botox injections that were definitely NOT cosmetic. They were, rather, a treatment for incontinence.
I first started having MS-related bladder symptoms in the late 1980s (not quite ten years after being diagnosed). MS-related nerve damage affects bladder function in a few ways. Nerves fire causing muscles around the bladder to spasm. That causes the brain to think, “I gotta go.” Conversely, when the brain tells the sphincter to let go, the message doesn’t always get through. So I felt like I always wanted to pee, sometimes peed without warning and sometimes couldn’t pee when I tried.
My first response was to wear pads in my underwear to avoid accidents. That worked for a while, but I reached the point where my first stop at any venue was the restroom. My neurologist referred me to a urologist who promised, “I’ll give you your life back.”
The first step was a urodynamics test: the bladder is filled and emptied through a catheter so medical folks can watch what it does. It showed I had urinary frequency, urgency and hesitancy. I started taking oxybutynin, a medication that reduces spasms in the muscles around the bladder. I also learned to self-catheterize. When I needed to pee, I’d insert a small plastic tube along my urethra so that I could fully empty my bladder. Because that increases risk of infection, I also took nitrofurantoin, an antibiotic targeted to bacteria that cause urinary infections.
I did feel like I had my life back: less fear of embarrassing moments, less needing to know the location of every restroom in every port of call.
That combination worked well for about ten years. At some point, leaks started occurring again, often enough that I began wearing “disposable underwear.” Luckily this was at about the same time that bladder taboos relaxed enough that such products were available at Target and Walgreens, rather than only by special order.
A little more than a year ago, I realized I was going through three or four pairs of underwear each day and was wet much of the time. Two factors were at work: my urinary symptoms were increasing and my legs were weaker. I would delay or avoid visiting the restroom because I was afraid of falling when transferring to the toilet. My neurologist suggested another urologist consult.
After trying some alternate medication (which didn’t work as well), my urologist scheduled me for another urodynamics test and an ultrasound to make sure my kidneys were not being damaged by urinary back-ups. Then he suggested the Botox treatment. Botox injections into the muscles around the bladder paralyze them. No spasms means no urgency and no frequency. He made it sound like an easy, in-office procedure, but cautioned we’d have to get insurance pre-approval.
I was surprised and anxious when the scheduler called to set me up for “surgery” and advising that I see my regular doctor for a “pre-op exam.” My doctor declared me “healthy, aside from the obvious” and assured me pre-op exams are the norm these days “just to cover somebody’s backside.”
The surgery was surgery: six hours at the hospital with a flurry of forms, repetitious checks of name, birth date, drug allergies. The (20 to 30) injections were done, thank goodness, under general anaesthesia. I was sent home with pain pills I didn’t use.
Symptoms increased slightly for a few days and, the Tuesday after the Thursday surgery, a miracle occurred. No urgency; no frequency; no leaks. After all these years, this is a heaven-opens-angel-choirs-sing miracle.
The downside is that this is a temporary condition that will last some months. At some point, symptoms will return and we’ll have to do it all again. Until then, I have my life back. Again.
>As a urology nurse who performs urodynmaics and tests patients after botox injections, I think the post botox window where the bladder is not overactive gradually decreases. There are ongoing bladder botox clinical trials to establish how long botox injections will last, etc. We see bladders that are not overactive for 6 to 18 months after botox in MS and spinal cord patients.
Mike Hallock, RN
San Diego
>Thanks to Ms. Wolfe-Jenson for sharing information about such a sensitive subject. The clinical trials involving BOTOX, MS and incontinence still need volunteers. Check it out at http://www.DignityStudy.com. I am an RN and clinical trial coordinator and have seen this treatment reduce incontinence.
Kathleen Meier, RN, Memphis, TN
>Anne said…
My friend anmd I are dealing with this problem big time. We are ready to make the move and live in Port Huron, Mi. The urologists here won’t touch it. Any idea of doctors thar would perform the procedure in Detroit or Ann Arbor, MI?
Thanks.
aholm23@firststep.net
>I am thinking of getting this done to as I have to pee ALL the time and medications don't do hardly anything for me. How expensive is this though because they told me my insurance likely won't cover it. Thanks for sharing your story!
>The first time I had it done in the hospital, the total bill was about $8600. My urologist has created facilities to do it in his office which comes to about $3600. My urologist never had any doubts that it would be covered by insurance, and (thank goodness) it has been.
>You have really great taste on catch article titles, even when you are not interested in this topic you push to read it
>I can not thank you enough for your post. And it was 2 years ago!! I am just finding it now, as I am at age 46 in the same position you were. i also am an MS patient. I've been diagnosed for 23 years. I have not had to go to undergarments, but I live only with Pads and cath daily and have had more accidents than I can count. My urologist at mayo clinic is suggesting botox and I have been interested in it for some time. SOO anxious to read more comments about it!!
>Merci d'avoir un blog interessant
>I am 31 and have been hiding for the last year and a half while I wear puffy diapers, get up 15 times a night and live a lie as people see me as I am on the outside, beautiful, trend-setting and outgoing. I have tried every medication on the market in doses four times the usual and finally was put in for a uro-dynamic where Botox was recommended. I quickly learned to cath and feel an excitement for what is to come!! (Minus the bill that will follow)…
Thank you for this post. It truly helps to read about others in the same dreary situation.
>I'm glad to see that people are still finding this post and finding useful. Frank discussion of bladder issues is important. There is beauty in all of us, but I agree that it's hard to feel it when you're focused on those diapers!
>I am 33 years old and recently diagnosed with MS. My Urologist just recommended Botox as a last resort. Your post was very informative as I continue to do my research before having the "surgery". I will surely check to see if my insurance covers this. Thanks for sharing.
>I had my first botox treatment on my bladder in 2010, about a year and 1/2 ago. It saved my life, as a professional, who goes to Court often, I worried about having an extreme accident, and carried an extra suit with me, underwear, pads, etc. The treatment has started to wear off a little bit, and my urologist is suggesting a second treatment. My response, let's do it! The botox has truly changed my outlook on life, my relationships, and work.
I went from wetting the bed nearly ever night, having accidents on the stairs to my apartment, wearing only black pants or dark suits to the exact opposite.
I recommend it to anyone, just remember, like anything, it will wear off and you will need another treatment.
>This may be my most-read post. Botox bladder treatment truly is a life-changer for many people.
>Thanks so much for posting! I'm just about to turn 22 and I've had an overeactive bladder for about 11 years, so when i found out I could have the botox I nearly cried. I'm so tired of having that "oh no oh no oh no! Not now, not here!" moment all the time!
It's nice to not feel alone in this! Now just saving what's left of my students income to get the op!
>Best of luck, RuthKatherine. When I had it done, my doctor was able to get insurance to cover it. Caution: you may need repeat treatments.
>As someone in the medical field in the midwest, we have a program to perform the botox procedure at cost saving certain candidates thousands of dollars. Email me for details.. Mike
>Mike, thanks for your offer, but unless you leave your e-mail address in the comment, there's no way for people to contact you.