A reintroduction

[Eden98]

A new forum format and having to create a new account are a good reason to reintroduce myself. I've been on the old forum for years and although I'm not the most active member, I like to check in every now and then to see how others are doing.
I am Marc, 50 years old. I have a neurogenic bladder due to FND: Functional Neurological Disorder. I've had bladder problems almost all my life. Until I was a teenager, I often wet the bed. Later I developed what I now know is called an overactive bladder. Things got better as a young adult and I thought I had outgrown it. But in my early thirties, the frequent and painful urges returned. Suddenly I started wetting myself when I didn't reach the toilet fast enough. I was in and out of the urologist clinic for almost a decade, trying everything from medications, pelvic floor physical therapy, Botox, indwelling and intermittent catheters to neurostimulation. Nothing helped and my condition only got worse. If I feel any urge at all, it only takes a second for the urge to start flowing. Beside bladder issues I have erectile dysfunction and occasional bowel incontinence. Due to FND I also have other physical limitations. I can only walk short distances wearing AFOs and my overall muscle strength is very low. I am currently no longer undergoing urological treatment. Instead, I'm focusing on staying as mobile as possible and keeping my hopes up for neurological treatment.

 

[Danman]

I had never heard about FND, so I looked it up. It sounds like you’ve been through a lot. I am glad you found this group with whatever support it can give you.

 

[Eden98]

Hi, thanks for your kind words, I appreciate it. I hadn’t heard about FND either before my neurologist told me I suffer from it. It’s a diagnosis, but not a satisfying one. It basically means the doctors acknowledge the signals from the body do not reach the brain and vice versa due to which body functions decline but the cause is unknown. I am still looking for answers though but I am no longer looking for a cure. My bladder won't get any better and I hope I find a way to cope when my bowel management gets worse.
Reading about others with incontinence issues and sometimes ventilating my own worries helps me feel less of an alien. IRL I am not much of a talker and keep my pain inside. I am a slow thinker so online it's easier to find words, which itself is a self reflecting activity.