I'm sorry I've been traveling and didn't see this thread. I have a little bit of information not covered here.
BLUF: I've avoided drugs to manage incontinence but from research and personal experience, I'd recommend at least trying Botox once.
My first round of Botox was last fall and similar to
@Pino it was life changing for about 3 months. From 8 days after the procedure until the 4th month, I had zero daytime episodes of incontinence. While I've come to accept diapers as a good solution for my issues, I can't tell you how liberating it was to get a break from them (it'd been about 20 years since I'd been in public without protection). In addition to not having the diapers, the relief from feeling like I have to go to the bathroom as soon as 5 minutes after the last time was so nice. I can't wait till 3 weeks from now when I get my second dose.
I have some thoughts and learnings related to administration of Botox:
- Important note on Botox:Doses range from 100 units to 300 units.
- Many urologists start with the 300 unit dose because it is the most effective and generally lasts the full 6 months that are required between doses. This dose has a retention risk over 20% but you don't need to start there.
- I started with 100 units because that dose has a low risk of retention (~4%). A 4% risk of ISC for a month or two was so worth a shot at continence for me.
- I'm getting a 200 unit dose this time which adds a 5% risk of retention for folks that tolerated 100 units well. I'll take my chances as it increases the odds of getting 5-6 months of relief.
- Maybe if 200 units goes well, I'll try the 300 unit dose. I don't understand why more urologists are not taking this more conservative approach to Botox therapy. Maybe because it gives very few people relief for the full 6 month dosing interval... I was happy with 3 months and I'm happy that I didn't take the retention risk.
- Botox can be administered to men by some providers without general anesthesia. My first administration was done under general anesthesia... I was having surgery anyway so I got a BOGO deal for my anesthesiologist - they didn't have any other coupon codes available so getting both done at the same time was my only option . I'm getting my next dose without general anesthesia so if anyone is interested, I'll post after that experience - I'll also try to remember to ask what allows them to do without general anesthesia versus those that mandate it and report back.
- The only thing I noted about the treatment was a little burning when I peed for about the first 24 hours.
InterStim: I did the InterStim trial too and it helped but didn't solve it. I never got the implant but the trial cut down a lot on my urgency and leakage. Through Medtronic's program, I interviewed about 7 people that were their posterchildren for the relief provided by InterStim - everyone I interviewed reported a reduction in urgency and leakage and said they had great relief. While many were able to cut down from diapers/pull-ups to pads or low absorbency underwear, not one of the people I interviewed said they were able to completely ditch protection. I decided that all of the limitations on activity with InterStim, the cost of the implant, the declining efficacy of treatment, the difficulty reversing the treatment, etc in combination with that lack of knowing it would be a complete fix caused me not to proceed with the treatment.