Is Botox worth it?

[Archives1]

My Dr wants to try one more thing for my total bladder incontinence and it’s Botox. I’m told this can wear off after a while. Is it even worth it? I’m already in diapers all the time and I’m wondering what good is it to go from diapers to a catheter to somewhat normal then back in diapers after it wears off?

 

[Archives1]

It's worth it for me, but it's a decision that is different for everybody.

In my case, it cuts way down on the pain caused by interstitial cystitis - when I have bladder spasms, they hurt, and Botox cuts way down on the spasms (and if I do have a spasm, it's not nearly as painful). Besides, it's nice to not need diapers for a few months, even if I know that I'll probably need them again for the last few weeks before the next round of Botox.

I've been getting Botox injections about every five months, but my urologist seems OK with stepping that up to every four months. That may keep me from needing diapers at all.

 

[Archives1]

That’s good to know thanks!

 

[Archives1]

Hi Randall,

Like the above message said, everyone is different but for me,it's a deal breaker to not have an aching bladder for 6 months so is worth every day I get relief. 30 mins of pain having it done is also worth the 6 months relief I get. Ok I still use pads and catheters but I have got used to daily living with them.

 

[Archives1]

It stopped working for me and my heart broke. It was heaven and well worth it to me. I had it done every three months

 

[Archives1]

It stopped working for me and my heart broke. It was heaven and well worth it to me. I had it done every three months

This is one of the reasons I opted not to try it. The idea of it possibly leading to retention and needing to catheterize also frightened me.

 

[Archives1]

I don’t think I will get it. Seems like a lot of money to spend for only a little while’s worth of relief.

 

[Archives1]

I have been using Botox for years now. It is the only thing that works for my neurogenic bladder. Before this I already had significant retention, anyway, to the point that I needed to catheterize the residual to avoid recurrent UTI's. So the fact that I had to continue catheterizing, after the Botox, to release at all was no big deal. I actually gain a good month of wearing no pad at all! Which is freedom beyond belief. I started at 100 then went to 200 and next time I'm up to 300. My bladder does seem to get use to it.
As for the discomfort of the procedure...It was ok bearable and then I switched Dr.s and her nurse gave me the tip to lay on one side and then the other while waiting for lidocaine to take effect. It helped to spread it in the bladder. Made a huge difference!
For me it has made a huge difference in my life. If I keep on a steady schedule of 3 1/2 months I find it is accumulative in nature. I am on Medicare and it is covered. I had tried all meds before this and nothing worked. I tried the STIM device which was very painful going in my spine due to my anatomy and then did nothing! So far, Botox is my snswer.

 

[Archives1]

Thanks for sharing your experience @msladyfish.
I've considered this as an option for myself, but I can't get past the fear of having to self-catheterise if it works too well.

 

[Archives1]

As a female doing self catheterizing, I have it easier than a male would. So, I can understand your hesitation. However, I would encourage any female. After a short adjustment period, I can now do it blindfolded with one hand tied behind me! lol One has to have a sense of humor with this, no?

 

[Archives1]

@msladyfish thanks as well for sharing. When you mentioned accumulative are you saying that progressive treatments made it last longer or more effective?

 

[Archives1]

I talked to my uro and will be getting botox. Lots of questions (read the old posts). I would like to hear from @ltapilot, @snow, @physlink, and others who are getting botox.

1. If it takes a few days or weeks to fully take effect, is your bladder slowly improving? Or ?

2. Were you able to resume normal activities after the injections or did you need time to recover?

3. Were you truly pad/diaper free for the interim, or still wore but with less leakage?

4. How did you handle sleeping if retaining? How did you know you were retaining?

5. Should I preorder catheters without knowing I’ll need them?

 

[Archives1]

1. For me, it's about a week before I notice an improvement, then it slowly improves over the next couple of weeks. It's not an all-at-once thing.

2. I try to take the day off work, but I can return to work right after the procedure if I need to. My new doctor is much quicker and more efficient than my old one, so I end up less sore after the procedure than I used to.

3. I am completely diaper free at the moment. I've been getting botox every four months, and I'm usually able to go at least three months before the urgency starts returning. Sometimes I can make it the whole four months without needing to wear a diaper.

4. Nighttime incontinence has never been an issue for me, so I simply self cath before bed to ensure that my bladder is empty and I'm good. If I need to get to in the night to pee, I will self cath then as well. I can feel that my bladder is not empty, and I periodically measure how much I pee versus how much I get out with the catheter so that I can track the retained volume.

5. Your urologist should be able to give you some catheters to use if you need them. Not everybody gets retention, and you may need Ryu try various routes of catheters to find the ones that work best for you. You're supposed to have a prescription to buy them, though I don't know how much that's enforced. My doctor writes me a prescription, and my insurance covers the cost of them.

I hope this helps!

 

[Archives1]

Thanks @ltapilot. I am not familiar with the term ‘Ryu’, what is this?

 

[Archives1]

Thanks @ltapilot. I am not familiar with the term ‘Ryu’, what is this?

That sentence should have read, "You may need to try various types of catheters to find the ones that work best for you."

 

[Archives1]

@ltapilot thanks. Got my CIC merit badge along with sample catheters and appointment scheduled. Didn’t realize, dawned on me, how much I am looking forward to the hope of pain/discomfort relief.

The sample catheters are not particularly stealthy to carry in your back pocket are they? Male version. Definitely will take your advice on finding a model which is discreet and works for me. Comments on pocket catheters? I ordered samples to try. Hope, knock on wood, that I will not need to rely on them.

 

[Archives1]

Highly recommend speedicath flex pocket catheters. Those easily go in trouser pockets and easy to use too. Holister va pro are also good.

 

[Archives1]

@laalaauk , thanks. Ordered samples of each.

 

[Archives1]

@theMochi, I use Wellspect Lofric Origo. These are not extremely compact, but I find I can fold them up into four segments, then tuck the end of the package into a little loop that's there for that purpose, and they're decently easy to hide. I wear cargo pants to work, and I generally leave the house with four of them tucked into one of the cargo pockets. If I had to wear jeans or slacks, I'd likely have to carry a smaller number and replenish my supply throughout the day, though.

I haven't used the Speedicath Flex that @laalaauk suggests, but I've been intending to try them as they look quite good. I've used the Speedicath Compact, which come in a package about the size of a large pen, but they didn't fit all that well into the pockets of the clothes that I tend to wear. It's all very individual, though - what works perfectly for me might not work at all for someone else, and vice versa.

 

[Archives1]

@ltapilot again thank you for the referral. The enclosing sleeve of the Flex are like the samples making it easy to use though I have no frame of reference to really judge at this point. I think I am putting too much thought into something I may not need.