My bladder doesn’t squeeze on it’s own, causing urinary retention and related problems. I live with an all too frequent feeling of urgency that’s completely out of line with the amount of urine I actually output, leading me to spend way too much time in the bathroom! Equally frustrating, I never feel “done” when I urinate; I simply make an executive decision that enough is enough.

My urinary issues stem from either dystonia, the neurological movement disorder I’ve lived with for 40+ years, or my dystonia meds- my neurologist and urologist have yet to solve that mystery! I’ve tried oral therapies including Flomax to no benefit. Frustrated with yet another “incurable” problem, I hopped off the bandwagon and stopped seeing my urologist. Surely, I owe him a visit, even another ineffective med is better than doing nothing.

Speaking from experience, what I will say is that people need to be vigilant about their bodies and inform themselves before beginning any medical therapy. Sometimes, side effects are unavoidable, presenting a most unappealing cost-benefit analysis. I’ve tried going down on my dystonia meds to see if my urinary issues would improve but no such luck, all that happened is that my dystonia worsened. But it was worth a try.

You’ve created a wonderful forum where people can share highly personal issues. Reading these stories provides comfort and sharing our daily struggles with chronic illness can prove invaluable.

For those interested in learning more about dystonia, they can visit my blog, Chronicles Of A Dystonia Muse:

I wish you all the best.



Posted on

September 29, 2020