@msuspartan I have all the symptoms of OAB (frequency, urgency, spasms, accidents) but I am primarily a bed wetter. On my first visit to a urologist (keep in mind I’m female), they did an in-office ultrasound of my bladder and a urine test - always go into their office with a full bladder because they will screen your urine for a UTI every time. They asked me about my symptoms. The most important question they asked me is if I’d recently had a fall that affected my spine. The answer was yes, I had recently fallen down a 20 ft. cliff, on my butt the entire way, bang bang bang all the way up to my head then back down to my butt. I herniated all of my vertebral disks from L-1 through S-1, most torn so thoroughly that I no longer have any remaining disc material between several vertebrae in my lumbar and cervical spine. My vertebrae have self-fused at this point, causing Spinal Stenosis. So fortunately they were able to get to a quick diagnosis of likely Neurogenic Bladder. They prescribed Oxybutynin and ordered some blood work that I had drawn that same day, to look for other signs of infection or markers of cancer.
When I first got there, I felt really out of place. The only other people in the waiting room were old men with prostate problems. But eventually I started to get the sense that I wasn’t alone. While I was in the waiting room I read pamphlets about all kinds of bladder problems that can happen to men or women. I found an NAFC pamphlet but then misplaced it for a horrible 2.5-year-long depression where I barely left my bedroom while I figured out diapers and bedpads and came to terms with having to start wearing them at age 39, just a few months after I’d separated from my ex-husband. I was devastated because I knew I wouldn’t date for a longgggg time. I was so glad to find the NAFC pamphlet later and to put it to good use, eventually, because the forum delivered me from so much loneliness and sadness!
During my second visit, they again repeated the ultrasound and urine screen. I told them the Oxybutynin wasn’t working. They then prescribed Myrbetriq, which also didn’t work. They wanted an MRI of my spine to confirm that nerves to my bladder had been severed. They also conferred with my back doctor and my PCP.
At my third appointment, I felt suicidal for my future because of what happened to both my spine and my bladder. In tears, I told them they better come up with a solution or I wouldn’t be living for much longer. Then the urologist told me all of the many options for treatment - which he should have done on the first visit, to give me some hope!!!! He said people with my condition usually respond really well to Botox, but that before the insurance would approve it, I had to undergo urodynamics and a cystoscopy, both of which were done on my fourth visit, on the same day, without anesthesia. They didn’t prepare me for what was going to happen and it was one of the most humiliating and embarrassing moments of my entire life. Somehow those tests proved to them and to my insurance company that I definitely had OAB and Neurogenic Bladder.
So then I was able to get Botox, which I finally did on my fifth visit. Again, they didn’t warn me about the very high pain level that comes with getting a needle injected into your bladder 44 times, via a double-wide, solid metal catheter that’s so big it had room for the camera and the injecting device. But Botox worked so wonderfully, and I felt soooooooo much better to have a diagnosis and a solution that reduces my urges and accidents by about 85-90%, even though it’s a painful procedure. Supposedly it’s less painful in men.
Botox continues to be the best solution for me and I’m getting more used to the pain with time. I get 200 cc quarterly, if I can afford the copay. Without Botox, I wet diapers most nights and get up to pee every 5-60 minutes. I’ll have an accident or a near-accident every time I go shopping in a big box store or to a movie theater where I can’t make it to the toilet in time. But with Botox, I usually only get up once per night to pee, around 6:00 a.m. I’ll go for two months without wetting a diaper. I hardly ever have such a wet diaper now that it wets through to my bedpads. Without Botox, I wet through my diapers and onto my bedpads 2-5 times per month. But with Botox, I pretty much revert to my pee schedule prior to falling down the cliff. Botox is miraculous for me!
My initial urologist retired last year. Fortunately he referred his practice to a younger, better urologist who works with more modern equipment in a new office. The old guy wasn’t giving me local lidocaine when cathing or injecting! I didn’t realize he should have been doing that until the new urologist told me everything would be less painful in his office. Now at the new office, they give me extra lidocaine and let it sit for about 20 minutes before they attempt the Botox injections. This has cut the pain by at least half. I feel quite relieved about that.
So, there is my story with urologists. If a urologist or his office feels a little off, or a little too old, or you feel uncomfortable or unsatisfied in any way, by all means, change doctors/clinics.
Oh yeah, the time I said I felt suicidal, I was speaking of the future, not that moment, but they called the cops after I left and they came to my front door and wanted to arrest me because suicide attempts are illegal in Utah. I told them where could shove it and shut the door in their prowling, nosy, intrusive faces!!! Eventually they went away. So always be careful who you say the word “suicidal” to.
