Is Botox worth it?

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Hi. I'm new to this forum. i've had OAB for years and am now totally reliant 24/7 on pullups for urinary incontinence .

I'm so fed up with the cost, inconvenience, and the amount of heavy garbage I generate. I'd like to get Bladder botox from my Dr. I had it done years ago as hospital outpatient with twilight sleep... and I had months of relief. The 2nd time was done in a Dr. office with just an injection of pain number-- but it hurt too much and didn't work.
Please explain the "retention" you all speak of, and why is self- catheterization needed. Is that common for women?
I'll ask my Dr about this, but wanted also to hear from those who have gone thru the procedure. Many thanks.

 

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I had lots of Botox. It worked for quite a while. It was inconvenient for me to do it in the hospital so after the first one, I had it done in the office. We determined that the best way to do it for me was to instill the lidocaine in my bladder and let it sit for half an hour. There were still a few spots that were very painful but most weren’t too bad. I stopped doing it when it stopped working, but thinking I’d maybe like to try again. When it worked, it was heaven!

 

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Retention is the inability to fully empty the bladder. Intermittent self-catheterization (ISC, also known as CIC for clean intermittent catheterization) is used to insert a catheter, drain the bladder fully, and remove the catheter again right after. This is done anywhere from one to eight times a day, depending on the individual doctor's recommendation.

Retention is an occasional side effect of botox. Studies claim it happens in about 10% of people, though I would have guessed it was more than that from my own discussions with people. It usually clears up after afew weeks, though it can sometimes go on longer.

Learning to catheterize yourself is fairly easy, and most people I've talked to don't find it objectionable. Some people are unwilling to learn or unable to do it on their own for various reasons, though, and those folks may not be good candidates to try botox.

Retention doesn't seem to happen more often with one gender or another. ISC is a bit more straightforward for males because of the ability to directly see the urethral opening. Women often have to use a small mirror to help get the catheter started in the right spot.

I hope this helps!

 

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@laalaauk , thanks. Ordered samples of each.

let us know how you get on with speedicath flex, I think they're great and you can put them back in the wrapper after use and put it in your pocket until you can find a bin if there's not one in the toilet you're using.very discrete and the plastic over the cath means you can cath without touching the cath if that makes sense.

 

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@laalaauk, I will. Thanks. It is several weeks out so, I will get back to you afterwards.

 

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Yeah, reviving the conversation for follow up. I had my botox treatment the beginning of the week and what I read it can several weeks to be fully effective. My bladder was a bit sore for several days afterward but that healed on the 3rd/4th day. As for the event, no numbing in the bladder itself, some of the injections were painful whilst others less. Overall, it was fairly tolerable and the injections quick.

I want to say it feels less unstable after ~week though I don't know if this is me wanting it to work verses measurable improvements. My optimistic basket if full, I am (verses meds) wanting this to work and be in the 70+ percentile group or in the elite 5% +/- that are continent. If only for the months it's effective.

How long did it take for you to start seeing positive effects? And knock-on-wood, when did you experience retention, if at all?

 

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For me, it's generally one week to start seeing an improvement, and two weeks for it to reach its maximum benefit. Then things will be good for another three to four months or so before it wears off fairly quickly and I need the next round of Botox.

Some doctors are better than others at making the injections less uncomfortable, but it's always at least somewhat unpleasant. It sounds as though your doctor did a pretty good job, from what you describe. I hope you get good results from it!

 

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I began to feel urine flow restriction after about 3 days and by 2 weeks I really had to squeeze hard to urinate normally. It's a lovely feeling to have a tight bladder again.

 

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@ltapilot, @laalaauk Thanks for your replies. A normal bladder feeling would be nice.

 

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Well it’s been a bit over two weeks and definitely feeling the full effects. What I hope are the full effects. Bladder is pain free, 80% leak free, and not spastic, yeah hoo! Though it is at a cost as I am catheterizing 4 times a day and peeing requires a lot of work. I need to find out (Dr)if the experience tappers down to where I can use the toilet 75% of the time, or this is it for 4-6 months.

@laalaauk The SpeediCath pocket are great when away from home. My healthcare provider doesn’t use them so, I bought them out of pocket. Will need to ask for coverage.

Peace

 

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Hey,

Really pleased for you. I can't remember how many units you had injected but you might want to reduce the amount next time so it reduces the amount you have to squeeze. I'm afraid I've had a bad case of piles from squeezing too hard but weighing the positives against the negatives, it's still worth it for me.

It's a pity your healthcare provider doesn't prescribe Speedicath flex, the second best in my opinion are Holister VaPro and they are pocket size too. Might want to try them or change healthcare provider to someone who can prescribe Speedicath flex or Va pro.

I've got boxes of spare Speedicath flex, if only you lived locally, I could drop them over to you!

 

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@theMochi, I'm glad you're having good results from the botox, though sorry you're having to cath!

What is it that's making cathing a lot of work? I ask because that's not at all how I would describe my experience with cathing. For me, it's something that, in a pinch, I can do standing in front of a urinal without taking much longer than just peeing. It helps that I'm male (I apologize that I don't recall if you're male or female) and that my doctor hasn't recommended that I use a sanitizing wipe before cathing, so I can see what I'm doing and have one less thing to juggle. Still, with some practice it should take very little time.

(Not using antiseptic wipes before cathing is unusual. My first urologist didn't feel that they helped, which does not seem to be an opinion shared by many doctors. My current urologist wasn't completely thrilled with it, but since I've been cathing myself for years without any problems he told me to just keep doing what I'm doing. I've recently started on a permanent course of antibiotics for other reasons, so at this point it's not likely that a bladder infection could even take hold unless it's something antibiotic resistant.)

 

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@ltapilot, M here. The use of a catheter isn't a lot of work, setup/use/dispose, comparatively. My wording is obtuse and I can see how it can be parsed differently. Semicolons are important! What I should have wrote was 'it takes a lot of effort/work to pee (relax/squeeze/empty) and with only partial emptying, catheters are how I mainly pee now.'

@laalaauk, Thanks for the offer, it would be a long walk. Cannot complain about my provider. Tops in most ways. They provide the VaPro equiv. to Nerds Rope, not the pocket version. Never hurts to ask if they can add it to what they offer. It could help others downstream. Har-har-har. Since I work mainly from home, the pocket versions are when out and about. I don't expect to go through boxes of them.

 

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I've always wondered if editing a post creates multiple messages to the folks referenced in the post or multiple messages if receiving the forum as a feed (if even available). If the case, I do apologize for the added traffic.

 

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Another update. I don't think I will provide another until the botox wears off or a significant change occurs. I thought that having a diary of sorts would help others. Caveat that this is my experience and there are many outcomes/experiences better and not better. I am somewhat hesitant to provide feedback with all of the COVID Cousin's friend knows someone who worked with b***s**t.

So, disclaimer aside, the big take away is I am currently diaper-free (day and night). This alone is amazing, it has given me an needed emotional/social vacation of sorts. I do fall within the small percentile of recipients that have to CIC to empty their bladder; 75% of the time at least. At first is was intimidating, and a bit sore. That passed. I was saddened that botox didn't restore proper functioning. However, catheterizing on a timed schedule is loads (technical, scalar, term) better than wetting myself. Long-term effects? Don't know, studies indicate minimal. Will the doctor allow future treatments? Don't know but, I really hope so. Costs? Way cheaper and easier to carry and dispose.

Would I do it again? Yes. Would I recommend someone try it? Yes.

I would encourage you to look into it and try it if available (insurance and candidate for).

Happy Holidays



@laalaauk, I got my provider to provide me the vaPro pocket.

 

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I had the botox in bladder procedure a week ago. . I'm an 80 yr old female with OAB, totally incontinent. It was done in a surgery center using lidocaine gel..No pain, just felt Dr placing the gel.She then proceeded to give 5 quick injections in the bladder for total of 100 mg.. Lidocaine gel worked very quickly. Felt slight prick for each of 5 shots but definitely tolerable. . Happily, there were no problems in my urinating after the procedure,no retention. Botox is slowly having effect.

 

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My issue with going this route is that as it only lasts around 3 months, it may work but the cumulative effect of 4 each year concerns me

 

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@Sarasotalady A late reply...It takes (for me) about 3 weeks for everything to settle down. Bladder was oddly achy for that time. YMMV on duration/effectiveness relating to your condition and goals. Dosage starts conservative and can go up based on your results and doctor's recommendations.

Best of luck, I hope the results help you.

 

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Continuing the update diary for the botox experience. Of course your experiences can vary from mine.

Some of the details maybe a bit too detailed for some but thought it is important to document them. So,...here you go:

For 3+ months it's been a catheter schedule which is great, over the last 2-3 weeks, I've been able to use the toilet catheter-less, more times. Fair about of residual. I still catheter several times a day. My stream velocity is not what it was, there is still weakness, and need to use abdominal muscles to help initiate and sustain the flow. Flow is sparse and split stream, another indicator of weakness.

It's wearing off. I am starting to feel more spasms/flutters and aches last few days. First larger accident of meaningful amount today. My bad, had cat sleeping on my lap...cat people know...got up too late. Prior to this, bits and drips, nothing biblical. So, I expect over the next month or three the effects are going to dissipate. I hope slowly as to get 6+ months out of the procedure; was hoping to only do botox yearly.

A question for others that had to catheter the entire (or significant portion) time, after the botox wears off and after multiple treatments, do you find your bladder and ability to retain better, the same, or worse?

Thanks for the advice.

 

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For me, the need to cath normally goes away after 2 to 2.5 months. I have been getting the botox every four months most of the time, at which point its benefits are subsiding but not gone. I often get a couple of months with no catheters and no diapers before the next round of Botox comes around, at which point I need to cath again for a while. If i can't get the botox on time, I'll start having accidents, and sometimes they'll start a week or two before the botox comes up on the schedule. .

I've had botox maybe eight or nine times, and I haven't noticed any long- term improvement in my ability to hold or in my pain levels.

After the previous round of botox, my retention has stayed high (250+ ml) so I've had to cath longer than normal. Because of a problem getting the doctor and the insurance to communicate, the procedure ended up being done late, at six months instead of four. That's caused a lot of pain and leaking that is just now calming down a week and a half after I finally got more botox. I suspect that the retention this time may be caused by BPH instead of botox, but I don't have confirmation of that just yet.