www.incontinentsupport.org

So my new urologist is pushing me to both have a new urodynamic test done and pending its results consider Botox. On paper it looks great 60-90% successes, of that the possibility of incontinence vanishing entirely during the 6 month duration. 6-12% chance of urinary retention requiring a catheter means 88-94% chance it won’t happen. 20% chance of uti, but that means 80% chance that won’t happen.

All that being said, I feel like a magnet for the side effects whenever I take medication, the prospect of the promised pain of the procedure and the absolute dread of using a catheter to urinate is causing me to really question if I want to try this, even with my insurance covering the procedure. I have had some horrible incidents with indwelling catheters and while this is a different type of catheter, the idea of sticking a catheter up my urethra at all makes me nauseous.

Am I being ridiculous for something that has a 90% chance of not happening?

I had urinary Botox injections in the period 1997-1998. My experience was that they worked pretty much as advertised. However, they wore off after successively shorter and shorter periods of time. The first injections lasted three months; the second injections lasted perhaps eight weeks, and, when the third injections lasted less than three weeks, my urologist recommended a urinary sphincterotomy. That happened in August, 1998. That lasted until January of this year, before it needed to be repeated. If you can make Botox injections work for you, wonderful. And, maybe the chemical formulation used now will be better than what I experienced. However, be prepared for the effects to wear off in time. My experience has been that the spehincterotomy cured my painful bladder spasms, and protected my kidneys from reflux damage in ways the Botox did not. Good luck and report back when you can.

Hello Tarlton,

I hate that you are feeling pressured into a treatment you don't want but always keep in mind, your doctors work for YOU. you are free to choose what direction you want to go.
My uro and put Botox on the table a few times but the way I look at it is this, at best, it could provide 90% improvement to my symptoms but that still leaves 10% that I will have an accident and wet myself and in that case I will still need some type of protection anyways. If that is the case, I just don't see a real point unless I can live my life close enough to a restroom to deal with that 10%.

Long story short, you do what you feel is best for YOU.

Thank you Rope and Patrick!

That’s how I feel too. But I also understand their perspective. It has to be annoying that the patient does not want to pursue Botox or Intersim which are the number one tools in his bag. I would wonder why the patient is seeing me and what does he expect or want?!

Which gets me to thinking. Do I need to be going to a urologist? My generalist wanted me to go and my original two urologists just wanted to be see. 1-2 times a year for a checkup and see if I wanted to pursue other actions. I have been using diapers to manage my urge incontinence for 20 years. It’s embarrassing sure but I am used to it and have worked my life around it so that I don’t miss out. I have a supportive wife.

For those who are like me with OAB that does not respond to medication and do not want to do Botox or Intersim, do you still see a urologist?

As long as your OAB is not threatening your kidneys, wonderful. However, if your OAB threatens reflux damage to your kidneys, something drastic may need to be done. A yearly visit to a urologist to check kidney function wold seem to be in order. Good luck.

I had an awful experience with Botox ten years ago (if you search for my posts here it should come up). Long story short it made me unable to pee the normal way. If I pushed as if I was trying to poop, I could pee. But if I did that, then if there was anything in my bowels it would come out also.

The effects also lasted much longer than they told me they would. They said "if you don't like it you just have to wait for it to wear off in six months" but it wasn't six months for me, it was more like two years. It did eventually wear off. But those two years were something I wish I hadn't had to go through.

Botox seems scary to me. It seems like you're meddling with stuff in there and if it goes wrong then there is LITERALLY NOTHING you can do about it, other than wait it out, which might take a very long time.

I know people on this and other incontinence boards are the outliers. We are the ones things didn’t go well for medication or behavior. I am sure the majority of people get good results from the meds and procedures.

However, experiences like yours only solidify my hesitancy. Plus, even getting the consult will cost me $250 since it goes against my deductible. I can’t justify that expense so I canceled the consult. I will get the Urodynamic done as that is covered, but the answer is no to Botox

My doctor said that if this third type of medication that I'm currently on does not help me, then the next step is Botox.
I'm not keen on the Botox. I pass out having injections or giving blood. Thought of a catheter is not comfortable at all.

Thank you all for the information and sharing your experiences , my urologist also suggested Botox, but I am just not there yet as much as I do not like all the meds.
I will stick with what I know is working for me for now, which is good reliable protection.

Paul Henry