Hello all
I’ve posted before about bladder spasms, overactive bladder, Botox therapy, bladder drugs and so on. It seems like I’m always moaning about my bladder. But today I had a urology appointment with a new doctor as the old one has retired. And what a massive difference.
The doctor said that the urodynamic test I had prior to the Botox didn’t look like a typical neurogenic bladder. I doubt that she would have recommended Botox based on my symptoms and the urodynamic test. The drugs I’ve tried and given up on based on side effects, didn’t actually work for me either.
My symptoms have been what I’ve called (incorrectly I now think) bladder spasms and frequent urge to empty my bladder, even when I’ve just used a catheter. I’ve only ever been incontinent when I’ve had a UTI, which has only been about once a year or so. And I’ve never had a leakage problem.
So the urologist I saw before recommended Botox, and gave me Betmiga meanwhile (which gave me raised liver enzymes). The Botox just made my constant urge to empty my bladder worse. So, I was already using ISC 6 times a day, that’s carried on or increased since the Botox. Most recently I tried Oxybutynin, but that didn’t help either and the side effects made me stop.
So today’s new urologist, does not think its bladder spasms, doesn’t think I’ve got a neurogenic bladder and has recommended a treatment called Cystistat. This is the info from their website: http://www.cystistat.co.uk/patient/what-is-cystistat
"Cystistat® is a clear, colourless liquid for use in the temporary replacement of the bladder lining.
The primary component is sodium hyaluronate, a salt of hyaluronic acid, which occurs naturally in the fluids of the eye, the joints, and in the glycosaminoglycan (GAG) layer of the bladder lining.
This layer - which is deficient in many patients with interstitial cystitis, and other painful bladder conditions - is believed to provide the bladder wall with a protective coating against irritants in the urine."
So it seems that my problem is actually not even necessarily related to MS. It’s the bladder itself that is being irritated by urine. And the Cystistat will protect the bladder wall from the urine. (Assuming it works!) it’s administered once a week for 4 weeks, then monthly after that.
So, hopefully this sorts my problems out. Additionally, it might give those of you with true bladder spasms and / or incontinence more faith that Botox will actually help you. I suspect that my experience with Botox may have bothered some of you who’ve been considering it. But clearly, my problems were not neurogenic in nature and could not have been effectively treated with Botox. I think this was one of those occasions when having MS confused the issue.
Sue