@rdelauro Hello and welcome! Sorry to hear about the tough struggles you’ve survived. I hope you’ll find friends and excellent advice to help you here.
I have a Neurogenic Bladder after falling down a cliff and severing most of the nerves to my bladder. My worst symptom is Nocturia/bedwetting, but I also have OAB and painful urges. Reflexively, I also have some numbness. No medication has ever helped me much. I definitely benefitted from doing physical therapy to strengthen my Kegels, but the thing that helps me the very most are Botox injections.
Initially they start most people with about 22 shots/100 units. If you need more, they can add more a couple of weeks later, or, on your next visit in a few months, they can start with a higher quantity. Several people here like myself require 200 units/44 shots. I have read that in other countries like the UK and Australia they often start people on 300 units, which would definitely be too much for me! To give you an idea of how much Botox that is, it only takes about 40 units to remove the wrinkles off a person’s face, so it’s a lot of Botox. If you pay out-of-pocket, it will cost you $3,000-$5,000, but most insurance companies cover it with an copay of several hundred dollars, including Medicare. The risk with if you get too much is that your nerves can become too paralyzed, and then you won’t be able to urinate, requiring self-catheterization. That has never happened to me, but it has happened to a couple of people here. That is not a typical response, but it is a potential response.
I have to warn you that if you’re female, the process is excruciating - sounds like you’re familiar with bladder pain, though. Men seem to report less pain. It’s a big catheter because it has to accommodate both the camera and the injector. My first doctor used a metal catheter, which was way more painful than my current doctor, who uses a plastic, bendable catheter. It’s an acute, pinching sensation, very raw. It reminds me of a couple of times I’ve had to have chunks of my uterus biopsied, for which they go in with a metal spoon that has a razor edge to cut the flesh out, while you’re conscious. It’s not as bad as having your cervix dilated, however. If you have a uterus and have had a biopsy, you’ll know what to expect with Botox injections, but 22+ times over! Part of it depends on your physician and how much Lidocaine they give you in advance, and how long they give you for it to kick in before they start injecting. My first urologist (a 75-year-old man with national accolades) pretty much injected the Lidocaine at the same time he started the injections, which was completely useless. I came about an inch from kicking him in the head from my reflexes. My second, current urologist is a female and does a much better job with giving me extra lidocaine and then giving it about 20 minutes to kick in. It is a lot less painful with her.
If you feel anxious about it, it is typical for them to prescribe you a combination of something like Valium and Hydrocodone to help with your anxiety and pain. Then you have to have somebody drive you. I would have somebody drive you the first time no matter what. It hurts for several days afterward, kind of feels like a UTI, with some mild bleeding, but then suddenly my urges return to a typical frequency in the daytime and are reduced by 80% in the night time. The pain of my spasms and urges decreases by 90%. Most people get Botox every three to six months. It gradually wears off over time. So far for me, it has never stopped working. Botox decreases my pain, my frequency, and stops all my my daytime and most of my nighttime leaks. Without Botox, I would wet through at least one diaper per most nights per week. I would be awakened every 5-60 minutes to have pee during sleep, which equates to not actually getting sleep. I would have at least two leaks into my bedding per month. But with Botox, in a three month period, I typically only have one barely-wet diaper every 5-6 nights, and 1-2 bedding accidents per quarter. I can actually get my shopping done without running to the bathroom 1 million times. I can make it through a movie without having to go to the bathroom. So I cannot recommend it enough. It is 100% worth the initial pain. I’m very surprised more people here don’t try it.
I have never had a Interstim. I have a lot of spine problems so I would never get one. If you do get one, I highly recommend getting one of the newer models that is MRI-safe. Over the years, I’ve seen several people here who responded to it positively, and some people have even had them implanted for decades.
One’s response to the various treatment options seems to really depend on the cause of your incontinence. But one thing is certain: almost nobody responds positively to the medications, so don’t expect much out of them!
With my kind of incontinence, staying dehydrated is key to having fewer accidents. Because my condition is based on nerves, it doesn’t matter if I drink a sugar soda or not, nor if I eat spicy food. I typically avoid coffee and tea, though, especially after 12:90 p.m. Alcohol is a major aggravant and I quit drinking that entirely, not worth it. I agree that stress and anxiety worsen matters.
Good luck and please let us know how it goes and what you choose!
