Botox? Who has tried it and its outcome.

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Hi All,
I'm relatively new here. I have incontinence bad. Had 2 operations that went south. Now I don't know what to do. I wear diapers and a pad in it almost all the time. My doctor is talking about Botox. I don't know much about it and don't know if I want it or not. I'm literally fed up.
I have a family on line appt with the doctor on Monday. Any suggestions to ask him.

 

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I m in the same situation. Did Interstim and now therapy. Had several uti. The doctor talked about Botox as last resort. Research says positively retention and that increases the risk of uti. Who did Botox and the results over a longer period. Like results
Repeat and uti?

 

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I haven't tried it as it was never recommended

 

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I did Botox for a couple of years. It was a full-out miracle. I had to have it done every three months for relief. It is a rather grueling procedure but it was absolutely worth it when it provided relief. After several years, it just stopped working. I had it a number of times after that, making sure there was no UTI, for instance, and that I was consistently taking my incontinence meds (sometimes an issue for me). With a broken heart, I stopped the Botox. The urologist said there was nothing to suggest it stopped working for people, and my PCP (at the time) sneered “You can’t have thought it would work long term”. So I don’t know what to tell you. It was heaven when it worked!

 

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I cannot recommend Botox enough. It is indeed miraculous. It’s definitely worth putting up with the painful procedure to get to the 3-6 months of rewards. 200cc works best for; 100cc wasn’t enough. You can go up to 400cc. Some people with severe, late-stage MS have to get 400cc every 3-4 weeks.

Once I’ve had Botox, I have a daytime bladder as reliable as the good old days. At night I still have to wear pull-ups, but my awakenings are fewer and my accidents less.

Some people here have had to self-cath after getting Botox. I have not.

I say, do it!

 

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@LeeC It is so strange that it stopped working. No doctor of mine has ever said that’s a risk. I mean, people get Botox in their face for decades, and it still works! People with certain eye disorders get Botox near their eye, and it continues to work throughout their life. I’ve been getting them in my trapezius muscles and eyebrows to dispel migraines, and they still work as effectively as the first time, now seven years later. I am so sorry you had the opposite experience. Maybe he needed to use more cc’s?

 

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I get Botox for interstitial cystitis pain, and it works very well. I can be nearly pain free for several months after a round of Botox. I usually get it every five months or so. I got an Interstim late last year, and I'm just now getting to the point that I really need more Botox - the last time was right at a year ago.

I do have to self catheterize several times a day, but that is a minor inconvenience in exchange for being largely pain free.

 

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Snow, we were using the max the doctor felt was safe. He was irritated at me that I could not give up coffee. I’ve given up so much… wasn’t willing with coffee

 

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@LeeC lol, I would just lie and say I’d stopped taking it! Maybe you can try a different urologist?

 

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I just got it don in June 25 I would recommend this the only thing is with me I cath morning and just before bed the only other time is if I am going away from home for more than he and half with no bathrooms everyone said it hurts to cath but it doesn’t bother me it’s better than being wet in diapers for me after about a week I was back in underwear with just a few drops her and there

 

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I have had it twice and I am waiting for my third lot. It makes my bladder feel like I am 16 years old again. It only lasts for 6 months and I had to self catheterise but the benefits outweigh the negatives for me. I hope it works for you and do let us know how you get on.

 

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@Garfield, I also found cathing to be painless despite being really, really scared of it beforehand. It was very uncomfortable for a couple of days, then slightly uncomfortable for a week or so, then completely painless. It was never horrible, and quickly got to the point that I could feel the catheter sliding in but there was no discomfort with it. I end up cathing to to eight times a day, depending on where I am in the Botox cycle (for me, the pain relief wears off before the retention wears off, so I start hurting any time my bladder has any urine in it at all) and it just takes a few seconds.

Getting good catheters helps. I used hydrophilic (Welspect LoFric Origo were the specific ones), which after a lot of experimentation I found were the ones that worked best for me. My urologist gave me all sorts of samples, and I got some samples from catheter manufacturers as well, so I tried at least a couple dozen different ones.

Finding the right catheter is like finding the right adult diaper - you just have to try a bunch and see what works best for you.

 

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I’m still trying different ones as I get them I just got some off Facebook market that they had left from a family member and they gave me 14 boxes for nothing they are better than the ones my insurance only paid a little for so I have to pay the rest it’s all trial and error just like diapers that’s why it took me so long to get Botox

 

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Coloplast speedicath flex are my choice. Very gentle.

 

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Self cathing is much less painful than a doctor doing the cathing.