Your diagnosis sounds right to me. I have the same MRI diagnosis you have when it comes to nerves that can be seen on an MRI.
I’ve been incontinent for nine years. During that time I’ve seen seven spine doctors, five interventional radiologists, four urologists, and eight orthopedic surgeons for knee/hip/and pelvis misalignment diagnoses. THEY HAVE ALL TOLD ME I HAVE NEUROGENIC BLADDER and Cauda Equina Syndrome, even though my Cauda Equina nerve pack appears intact on my lumbar/ MRIs. I have had four MRIs of my hips and pelvis with hip injections; I’ve had 15 lumbar/sacral spine MRIs and seven lumbar spine injections; and I’ve had endless knee X-rays, MRIs, 47 knee injections, and four knee surgeries. My pelvis is tilted backward by 18° because of how badly my spine is messed up and because I need hip and knee replacements. My spinal tilt and lumbar tilt/scoliosis have made me knock-kneed. There is no limit to the way lumbar spine damage can ruin your life. You can try what I do which is to try to look on the bright side that you’re lucky you didn’t end up with fecal incontinence, also. Several people on this website are also dealing with that!
As for the lumbar pain, it will never go away either, not even with surgery - surgery will only make it worse in all likelihood, and just lead to another surgery then another and another u til you e got a metal rod down your spine. I highly recommend not going that route. No surgery can ever make you continent again. TENS only works for pain while you’re wearing the unit. I’ve found heating pads to be more effective than a TENS unit. I keep one in my bed and on my work chair at all times. I remove the cover of the heating pad so I can make it even hotter. If I travel far by vehicle then I keep a heating pad on my car seat using a power adapter to plug it into the cigarette lighter. I’ve found taking four Aleve liquigels (easier on your stomach than tablets) every 12 hours helps the most with chronic back pain. If that doesn’t cut it, then I add Tylenol for Osteoarthritis. If I’m still in agony after that, if it’s over a 7/10 on the pain scale, I’ll take a Percocet or two.
If you find that you need a real pain doctor, I suggest that you find a combo pain/spine doctor because they really understand more about what you’re going through than a general/all-around pain doctor. There are many non-opioid medications to try before the heavy duty stuff so don’t be scared to go to a pain doctor. I thought there were only opioids so I avoided a pain doctor for the first 12 years of my agony (I had multiple severe snowboarding injuries before I fell down the cliff), even though all my doctors kept telling me to see a proper pain physician. I wish I had seen one much sooner so I hadn’t missed out on over a decade of my life.
One more thing about chronic physical pain: it’s very similar to grief. You never get over it and it never goes away. But eventually you do get used to *the idea* of it and you become accustomed to living with it always in your life. It becomes . . . less shocking. That doesn’t mean it doesn’t hurt like hell - it always does - it’s just that you kind of get used to living with that hell.
It’s the same with incontinence, too. When I first became incontinent, I entered the déposer, darkest depression of my life because I became disabled in multiple ways thanks to injuries sustained during that fall, including a Traumatic Brain Injury from the concussion I got when my head hit rocks. Concussions can alter the psychology of the brain forever for the worse. I had also just split up with husband two weeks before the fall. But the incontinence was the most humiliating part of the entire experience. I laid in bed for about 2.75 years and barely went anywhere. I didn’t work. I let my friendships and family relationships suffer. I was 39 then, which is young to become incontinent. It doesn’t happen to most people until they’re in their 70s and their dating lives are resolved.
Eventually I found this website and forum and realized I wasn’t alone in being incontinent. I finally accepted that I needed to wear diapers and use bedpads. I went from being suicidal to starting to see a path forward into a future thanks to this community. Around that same time I learned about Botox injections and brought them up to my urologist. My life improved dramatically once I started with Botox. Without it, I have to pee every 5 to 60 minutes all throughout the night (8 to 90 times per night), no matter how much I restrict my fluid intake. Thanks to Botox, now I only wake up between three and five times per night. If I wet my diaper, I don’t wet enough that my entire bed gets soaking wet.
As a man you also have other treatment options available to you that don’t exist for women, like condom catheters with leg bags, or an artificial urinary sphincter (AUS). The men will have to tell you about those things. They’ve been posted about tons of times so you can find the previous posts by using the search (magnifying glass) option at the top of the screen. Make sure you go to “advanced options,“ then search the timeframe for the entire history of the forum so you’re not only seeing the most 30 days of posts. An Interstim implant is another option to research but those devices don’t work particularly well with for those of us who have Neurogenic Bladder. From what I’ve read here over the years, a few people find Interstim devices to be miracles, but most people don’t like them nor get a good result from them.
