Tell me your bladder botox experiences

[tw89]

Hi everyone, my name Thomas.


I’ve recently been thinking about doing bladder Botox for my bladder problems that are caused in result of MS. I currently haven’t discussed it with my doctor yet but I just want an insight from others right now.I know there’s mixed reactions with Botox and everyone’s different but I’d love to hear from any of you who’ve had Botox.

-I mainly wanna know the process from the procedure to how it helps you and if it worked or not.

-I’d also like to know the severity of you’re incontinence and any side effects and if you had to catheterize and if you did how long?

-Another thing I’d like to know is if it stopped you’re problems completely or just a little?

-Was it worth it?

-I’m also curious about if you do continuously cath is it constantly even after several Botox treatments or did the diminish over time?

So many questions, but I’d appreciate if someone could fill me in and tell me about their entire experience.

 

[PCBaby]

My urologist did try it, but apart from leaving me with a constant dribble instead of my usually flood it didn;t actually work for me. I had mine done under a local but if you get the option have a general anaesthetic (be out to sleep), it is normally done as a day patient so you will go home the same day. This is a UK link to some really good info - http://www.nottinghamurologygroup.co.uk/treatments/bladder-botox-injections

 

[ltaluv]

I get Botox every four months or so. My most recent was in March, and I may have it done again in June.

The procedure itself is unpleasant. I have it done in my urologist's office. I empty my bladder, then the nurse will come in and cath me to make sure I'm empty and put lidocaine into my bladder to numb it, and we give it about ten minutes to work.

After the ten minutes, the doctor and nurse put in the cystoscope. It takes the doctor a minute or so to locate the proper area of the bladder, then she makeovers the scope and the nurse does the injections. I usually feel the injections as pressure, but sometimes I feel it as a sharp pain. The procedure hurts, but it's not excruciating. The worst part for me is that by the end, my urethra is extremely sore from the cystoscope.

Once all of the Botox is injected, they pull out the scope and I get dressed to leave. Even when I haven't been wearing diapers full time, I always wear a diaper to the appointment because I leak a lot afterwards. The first time it was dinner I didn't have a diaper, and ended up having to ask the nurse for one. I'd rather skip that embarrassment, even though they know I wear them.

It's generally a couple of days before my bladder control returns and the pain subsides. I'll use Vicodin for the pain; my doctor is surprisingly free with the stuff, and writes me a scrip any time I ask.

After a couple of days, my urethra calms down and my continence gets back to where it was before the botox. It takes a couple of weeks for the botox to take full effect; I can tell as it works by how much urine I'm retaining. The effect on my pain and incontinence varies. Sometimes a get tremendous relief, and I can go weeks it months without diapers. Sometimes there seems to be little benefit. I don't know why there's so much variability, but most of the time it helps quite a lot so it's worth the pain for me.

I started cathing after my first round of Botox, and I've never been able to stop. I think I was probably retaining urine before I ever had Botox, and I really needed to be self cathing anyway. I definitely retain more urine after the Botox - my retained volume will go from 150-200 to 250 or so. Since I have to cath anyway, it's no big deal for me.

It helps enough that I keep getting it done, but I wish it did more. I'd love to try something like the Interstim to see if it would work better than the Botox alone, but they have yet to come out with MRI-safe leads and I can't skip my annual liver MRI/MRCP. So Botox it is.

As far as PCBaby's suggestion about having it under general anesthesia, I'm not sure I personally would go that route. I get such a hangover from general anesthesia that I would rather put up with the discomfort of the procedure rather than being sick for a couple of days. That may be related to my fibrotic liver and how it processes the anesthesia, so you might well do better than me with a general. It's not unbearable with just the local numbing, but it's very unpleasant.

 

[HumanFly]

My urologist did try it, but apart from leaving me with a constant dribble instead of my usually flood it didn;t actually work for me. I had mine done under a local but if you get the option have a general anaesthetic (be out to sleep), it is normally done as a day patient so you will go home the same day. This is a UK link to some really good info - http://www.nottinghamurologygroup.co.uk/treatments/bladder-botox-injections

Was this into the bladder wall or the sphincter? If it was into the sphincter then this would produce the dribble as it keeps the sphincter relaxed, ie. open, all the time. Putting it in the bladder wall is what this article is about.

 

[tw89]

My urologist did try it, but apart from leaving me with a constant dribble instead of my usually flood it didn;t actually work for me. I had mine done under a local but if you get the option have a general anaesthetic (be out to sleep), it is normally done as a day patient so you will go home the same day. This is a UK link to some really good info - http://www.nottinghamurologygroup.co.uk/treatments/bladder-botox-injections

Thanks for the input, I’ll check the link out.

 

[tw89]

I get Botox every four months or so. My most recent was in March, and I may have it done again in June.

The procedure itself is unpleasant. I have it done in my urologist's office. I empty my bladder, then the nurse will come in and cath me to make sure I'm empty and put lidocaine into my bladder to numb it, and we give it about ten minutes to work.

After the ten minutes, the doctor and nurse put in the cystoscope. It takes the doctor a minute or so to locate the proper area of the bladder, then she makeovers the scope and the nurse does the injections. I usually feel the injections as pressure, but sometimes I feel it as a sharp pain. The procedure hurts, but it's not excruciating. The worst part for me is that by the end, my urethra is extremely sore from the cystoscope.

Once all of the Botox is injected, they pull out the scope and I get dressed to leave. Even when I haven't been wearing diapers full time, I always wear a diaper to the appointment because I leak a lot afterwards. The first time it was dinner I didn't have a diaper, and ended up having to ask the nurse for one. I'd rather skip that embarrassment, even though they know I wear them.

It's generally a couple of days before my bladder control returns and the pain subsides. I'll use Vicodin for the pain; my doctor is surprisingly free with the stuff, and writes me a scrip any time I ask.

After a couple of days, my urethra calms down and my continence gets back to where it was before the botox. It takes a couple of weeks for the botox to take full effect; I can tell as it works by how much urine I'm retaining. The effect on my pain and incontinence varies. Sometimes a get tremendous relief, and I can go weeks it months without diapers. Sometimes there seems to be little benefit. I don't know why there's so much variability, but most of the time it helps quite a lot so it's worth the pain for me.

I started cathing after my first round of Botox, and I've never been able to stop. I think I was probably retaining urine before I ever had Botox, and I really needed to be self cathing anyway. I definitely retain more urine after the Botox - my retained volume will go from 150-200 to 250 or so. Since I have to cath anyway, it's no big deal for me.

It helps enough that I keep getting it done, but I wish it did more. I'd love to try something like the Interstim to see if it would work better than the Botox alone, but they have yet to come out with MRI-safe leads and I can't skip my annual liver MRI/MRCP. So Botox it is.

As far as PCBaby's suggestion about having it under general anesthesia, I'm not sure I personally would go that route. I get such a hangover from general anesthesia that I would rather put up with the discomfort of the procedure rather than being sick for a couple of days. That may be related to my fibrotic liver and how it processes the anesthesia, so you might well do better than me with a general. It's not unbearable with just the local numbing, but it's very unpleasant.

What kind of incontinence do you have and is it caused by neurogenic bladder?

 

[ltaluv]

Interstitial cystitis. When my bladder is painful and irritated, I feel like I have to pee all the time (even when I've just fully drained my bladder with a catheter), and when it gets partway full I can get spasms that cause extreme urgency and lead to accidents.