Botox for urinary incontinence?

Posted by JK @contentandwell, Jun 29, 2019

Has anyone had Botox for urinary incontinence, and if so were you happy with the results? I am considering it. I know there are risks, primarily getting a UTI following the injections, but that can quickly be cured, and also not being able to easily urinate and having to self-catheterize for a while.
I have been for Pelvic Floor PT, and currently take Trospium which I would like to get off of (I have read it's one of the drugs that increases the chance of developing Alzheimer's).
Any information anyone has would be appreciated.
Thank you.
JK

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Hi @contentandwell I wanted to tag @bborth has mentioned botox for digestive issues and may be able to offer support or what there research showed.

I also wanted to share this article from the University of Michigan on this procedure: http://www.med.umich.edu/1libr/urology/BotoxAInjections.pdf

Did you doctor suggest this procedure or did you find it on your own?

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@ethanmcconkey

Hi @contentandwell I wanted to tag @bborth has mentioned botox for digestive issues and may be able to offer support or what there research showed.

I also wanted to share this article from the University of Michigan on this procedure: http://www.med.umich.edu/1libr/urology/BotoxAInjections.pdf

Did you doctor suggest this procedure or did you find it on your own?

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@ethanmcconkey I have been going to a urogynecologist but the problem persists. I had read about it so I asked her. I had to have urodynamic testing to determine if I was a good candidate, and I am.
My question is really specifically about having it for incontinence problems. I appreciate you trying to find a member with a similar experience but I doubt Botox for digestive issues problems would be similar. Thank you for the link.
It really is amazing that something that I believe was originally used for cosmetic purposes has been found to help in many ways. My daughter may end up getting it for migraines, but with any of these problems it has to be demonstrated that other treatments did not help enough before insurance or Medicare will cover the cost.
JK

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Hi, @contentandwell - a few other members who have mentioned botulinum toxin (Botox) for urinary incontinence who may be able to speak to its effectiveness are @jenniferhunter @ronnieanderson @noreenf.

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@lisalucier

Hi, @contentandwell - a few other members who have mentioned botulinum toxin (Botox) for urinary incontinence who may be able to speak to its effectiveness are @jenniferhunter @ronnieanderson @noreenf.

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@lisalucier thank you, Lisa. Hopefully one or more of them will contribute something. There are negatives with Botox, but right now I am taking Trospium and that is one of the drugs that can contribute to getting Alzheimer's. I am hoping that once I have the Botox I will be able to drop the Trospium.
Ever since the really dumb PCP I had when I first had an HE episode told me on the phone that she thought I had Alzheimer's I have been very conscious of it. One HE episode out of the blue and she thought it was Alzheimer's? When I mentioned that to the neurologist, and also to my endocrinologist, they both were incredulous. She really should not be a doctor, maybe a PA. I switched as soon as I could find a different PCP, one who is a doctor of Internal Medicine since our doctor friends told me they are generally better at diagnosing than family medicine doctors. Even so, the internist did not diagnose me, the neurologist did!
JK

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My GI surgeon said that botox would be good to try for gastroparesis, but not very good if bile reflux. That is the problem not having a concrete dx, and why he is sending me to Mayo Clinic now to get some clarification. Frustrating to say the least when looking for some relief.

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@contentandwell My mom had Botox injections done inside the bladder and the effectiveness lasted about 6 months, and then it would need to be repeated (in her case anyway). The doctor inserts a camera after filling the bladder with water and does about 30 injections in the wall of the bladder with Botox. They do use some numbing agents first. My mom was able to feel the pain of the injections after the numbing and they were sharp pains. Sometimes there is some bleeding after. I was able to see all of that on the video monitor while my mom was having this procedure and some blood oozing from the injection sites. This treats an overactive bladder that contracts too much. There are other issues that can contribute to incontinence which my mom also had, where the urethra does not close enough, and she had injections of a silicone like bulking agent to stiffen and thicken the opening. I guess that is like having a sink stopper that doesn't fit and the water drains away slowly. There can also be spine issues and nerve problems contributing, and spinal stenosis is know to cause issues like this, and I suspect that may be true in her case. My mom wasn't satisfied with her results even though she had about 50% improvement, and she now has a foley catheter and a leg bag. I say 50% because if she went to the rest room every 2 hours before she felt like it was necessary, she stayed dry, and if she felt urgency, it would be too late.

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@bborth

My GI surgeon said that botox would be good to try for gastroparesis, but not very good if bile reflux. That is the problem not having a concrete dx, and why he is sending me to Mayo Clinic now to get some clarification. Frustrating to say the least when looking for some relief.

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@bborth thanks. I’m sure it must be very different though, depending on what you have it for.
JK

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@jenniferhunter

@contentandwell My mom had Botox injections done inside the bladder and the effectiveness lasted about 6 months, and then it would need to be repeated (in her case anyway). The doctor inserts a camera after filling the bladder with water and does about 30 injections in the wall of the bladder with Botox. They do use some numbing agents first. My mom was able to feel the pain of the injections after the numbing and they were sharp pains. Sometimes there is some bleeding after. I was able to see all of that on the video monitor while my mom was having this procedure and some blood oozing from the injection sites. This treats an overactive bladder that contracts too much. There are other issues that can contribute to incontinence which my mom also had, where the urethra does not close enough, and she had injections of a silicone like bulking agent to stiffen and thicken the opening. I guess that is like having a sink stopper that doesn't fit and the water drains away slowly. There can also be spine issues and nerve problems contributing, and spinal stenosis is know to cause issues like this, and I suspect that may be true in her case. My mom wasn't satisfied with her results even though she had about 50% improvement, and she now has a foley catheter and a leg bag. I say 50% because if she went to the rest room every 2 hours before she felt like it was necessary, she stayed dry, and if she felt urgency, it would be too late.

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@jenniferhunter Thanks, Jennifer. I thought I had responded to yo before but it does not appear as if I did. Maybe I forgot to hit "reply"!
Thanks for the info. I think just the Botox injections will be all I need. I am sort of scared about any pain, although I am usually pretty good at pain, but also at the possibility of having to self-catheterize. I am definitely going ahead though because the Botox will allow me to get off of Trospium, a drug that is said to contribute to getting Alzheimer's. It will be great if I can finally not have to be up numerous times during the night.
JK

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@contentandwell

@jenniferhunter Thanks, Jennifer. I thought I had responded to yo before but it does not appear as if I did. Maybe I forgot to hit "reply"!
Thanks for the info. I think just the Botox injections will be all I need. I am sort of scared about any pain, although I am usually pretty good at pain, but also at the possibility of having to self-catheterize. I am definitely going ahead though because the Botox will allow me to get off of Trospium, a drug that is said to contribute to getting Alzheimer's. It will be great if I can finally not have to be up numerous times during the night.
JK

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@contentandwell Hi JK. Another thing that can help is hormone replacement because it helps maintain muscle tone. Maybe that's been discussed, but I thought I'd mention it just in case. Bioidentical hormones can be compounded in a pharmacy. My mom wasn't able to try that because it can increase risk of blood clots and she already had issues with clots in her lower legs because of being so sedentary with using a wheelchair. My mom tried some prescriptions for bladder control and it made her blood pressure too high. Other things her doctor said was to limit consumption of milk because it's a diuretic and she would drink her fluids earlier in the day. My mom's doctor adjusted the amount of Botox he injected on subsequent visits and a higher dose did work better for her at least. You could ask what dosages typically work for most patients, and what to try next if they don't help enough. I hope Botox works for you and you get relief and no longer need drugs that can cause side effects. It lasts about 6 months and then the procedure would probably need repeating.

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Thanks, @jenniferhunter I presume they start with a typical dose and move forward from there. I trust my urogynecologist very much, and I also sometimes run things by my daughter's sister-in-law who is also a urogynecologist and who actually mentored the doctor I am going to.
I know nothing about hormones but I do know they try to limit as much as possible the treatments you are getting. I think moving to hormones would probably be a last ditch effort if necessary. I have never had a clotting problem, and in fact my platelet count tends to run a bit low so that is probably overall not bad -- it's just below the typical range usually, sometimes within the range.
I never heard that milk is a diuretic! How interesting. Of course many people say that coffee is but the latest research I have read says that if the person is used to drinking coffee that effect diminishes. When they kept a test group off of coffee for a while and then started them back on coffee, after two weeks it stopped acting like a diuretic.
Thanks for the wishes on Botox. I am a bit nervous but who wouldn't be? My appointment is on the 31st. They do sedate you so my husband will have to come to drive me home. They said to expect to be there for a few hours. Just thinking about it, I get butterflies in my stomach, and I am not usually like that. I tend to go to surgery even completely calm, just anticipating a positive outcome.
JK

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