Dr wants me to have “botox” any experiences with it?

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Batt

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My life is a bladder spasm and gosh darn it’s frustrating. Been on pills and while it let’s me sleep, I still have urgency especially in the morning and have involuntarily lost urine on the way to the bathroom. Daytime is by polar, sometimes its every 15 minutes and others it’s every hour maybe hour and a half max. When I do go, it just flows, with no feeling. I have never been so bloody sick if something in my life. Botox makes me extremely nervous, one because use a self catheter presents a physical roadblock and two I have medication allergies. Those happen to be antibiotic, so dealing with UTI’s and constantly having to take antibiotics could cause significant problems. So TLDR has anyone had this procedure, was it worth it? Did you have to self cath? To anyone else if in my shoes would u do it?
 
I had it done 3 times on my sphincter before ultimately getting a sphincterotomy. For me they had a minimal effect. Even if it does work, it only lasts 3 months, and it is generally used 3 times max.
 
Bladder spasms are brutal.. people just don't understand what they are.

Imagine all of a sudden you have the worst desperation to pee that you've ever had in your life, and it comes on with a couple seconds warning, if that and there's no relief until it passes. In my case they last 30 seconds or longer.

Now imagine that happening every 15 minutes.
 
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Search the forum for previous posts. A number of members have tried it. I told my urologist no to Botox and Interstim myself. I can't say I haven't thought about them long and hard, but my life is way too active and way too complicated to add those "remedies" into the mix.
 
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I've had somewhere around a dozen rounds of Botox, and it's worked great for me. It significantly reduced my spasms and incontinence, though not so much that I was able to quit wearing diapers. Still, it reduced my pain and greatly improved my symptoms.

Most people need it every four to six months. My doctor has not said anything about only doing it a few times - it's something that she's indicated we can keep doing as long as necessary. I've generally gotten it every four months, though I haven't had it since my Interstim in November. I'm probably due now, though, since I've been having increased levels of pain and urgency.

I end up self cathing for several months after each dose, to the point that I usually don't get to quit before the next round of Botox. Even now, seven months after my last dose, I still self cash once or twice a day.

Self cathing is not as big a deal as many make it out to be. In several years of doing it, I only had one confirmed urinary tract infection, and that was likely hospital acquired. It took me a couple of weeks to get past the initial discomfort of sliding a catheter into my urethra, but after the first couple of weeks it's been just another part of my daily routine

TLDR; I've had it many times, and it works great for me. I plan to get it again soon.
 
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I’m not physically able to self cath unfortunately.
 
Batt said:
I’m not physically able to self cath unfortunately.
That may make Botox difficult. Many people don't need to self cath after Botox, but many do, and they can't find out which group you'll be in until they've done it.

Definitely something you should bring up with your doctor.
 
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I don’t think I want it to be quite honest. One I can’t self cath, two what if I loose health insurance etc.. I’ve also have a bad experience with catheters, during my cmg procedure. I mean what’s worse giving up and using diapers, or 900 dollar procedure every 3 to 6 months and possibly being dependent on a folly. Besides what if the current world situation gets worse, at least with diapers you can get by with cloth. Where as if you have a paralyzed bladder and cath dependent you would be in a world of hurt. So at the moment I’m leaning very strongly to just going 24/7 pull up during day, and diapers at night or during the day too. Any possible embarrassment is offset by what the other possibility might be.
 
Well, for me at least, the spasms were incredibly painful. I'd take doing Botox every 4-5 months over having to live with that pain dozens of times a day. Botox cut down on my accidents, but didn't completely eliminate them, so for me it wasn't a choice between Botox and diapers, but rather a choice between Botox and severe pain throughout the day. I had to wear diapers regardless, though I had accidents less often when I was getting Botox.

What prevents you from self-cathing? It's an easier procedure than many people think, though I do realize there can be physical issues that make it impossible.

If your spasms aren't painful, then choosing diapers over Botox (or perhaps choosing more diaper changes over Botox) may be the right choice.
 
WOW, I am shocked at how cheap they said it would be for you. When I started having problems, I had two rounds of Botox and the hospital billed the insurance over $20,000 for the "surgery" procedure. @Italuv has noted what happened with him, and mine was close to the same thing. I still had to wear diapers because I would over flow and or at times my bladder would go ahead and squeeze some out. The doctors wanted me to self cath 2-4 times a day depending on how much I leaked. For self cathing, using a clean/new catheter each time helps cut down on UTI's. Since I still had to wear diapers, and the insurance wouldn't cover diapers, but would cover Botox every 3 months, I didn't find it was worth all the copay I had to do since I still had to wear diapers.

Since you can't self cath I am suprised the doctor recommended Botox. Hope the doctor explained that the Botox numbs the bladder and because of that, it will not drain enough urine out and they request the patients to self cath so that the bladder doesn't get over filled where it starts backing up into the Kidneys. If that happens, it could damage the Kidneys. Also note that the amount of Botox they inject here in the US is a smaller dose than what is inject in the UK. Those in the UK seam to have a little better experience when it comes to how long it last.
 
ltaluv said:
Well, for me at least, the spasms were incredibly painful. I'd take doing Botox every 4-5 months over having to live with that pain dozens of times a day. Botox cut down on my accidents, but didn't completely eliminate them, so for me it wasn't a choice between Botox and diapers, but rather a choice between Botox and severe pain throughout the day. I had to wear diapers regardless, though I had accidents less often when I was getting Botox.

What prevents you from self-cathing? It's an easier procedure than many people think, though I do realize there can be physical issues that make it impossible.

If your spasms aren't painful, then choosing diapers over Botox (or perhaps choosing more diaper changes over Botox) may be the right choice.
Things I don’t want to share on a public forum unfortunately
 
I appreciate everyone’s advice, while my spasms are intense and cause significant issues for me. For TMI reasons I can’t self cath, and as such I’m gonna tell them no. After all you don’t solve a problem by creating another especially one that can cause significant issues. Guess I have to live with spasms that keep me up at night at times, and wet pads.. sigh
 
There are several different types of medication used for bladder spasms. As the pills you're currently on are not helping enough, you should talk to your urologist about either upping the dosage or switching to a different medication to see if it gets better. If switching meds, ask for a couple of weeks worth of samples to find out if they are effective for you before buying them.

I tried different meds many years ago and non were effective. My new urologist suggested trying Myrbetriq, which was not on the market the last time I tried medications, and it's working well for me. I never knew I've always had a constant urge to go until it went away three months ago when I started taking Myrbetriq.
 
I've had a lot of improvement in my bladder spasms with Myrbetriq as well.
 
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