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Peeing in Public: A Tale of MS and UTI

Posted on: October 22nd, 2013 by admin
Category: Managing MS

Subway PlatformTo pee or not to pee? Or where to pee? Or how to pee? Do I pee my pants, effectively ending my day before it’s begun? Or do I walk to the end of the subway platform, hide behind a support beam, relieve myself, and continue on my day’s appointed rounds?

You read that correctly. I pee on the subway platform. It’s that, or get where I’m going with wet pants. I pee my pants with abandon when I’m returning home for the day, but not before. I’m hoping to make you laugh about yet another aspect of MS that we may just have to bear: urinary-tract infections, aka UTIs.

I’ve done all the alternative remedies for urinary-tract infections: lots of water; tablespoons of cinnamon mixed into water; apple cider vinegar; baking soda in water; cranberry juice, fresh and frozen, with 1,000mg of vitamin C; and D-mannose. After all these failed, I got a urologoist. Then I got another urologist. No dice. Now I’m going to try to get my bladder injected with botox, and to get an appointment with an infectious-disease specialist.

The complicated nerve systems needed to expel urine or to detect the need to go is often affected by MS. Additionally, most of the drugs to manage the disease or the symptoms make UTIs a sure thing for MS patients; just Google “Tysabri” or “Ampyra” and “UTI.” Best of all, UTIs can cause pseudo-exacerbations so similar to MS symptoms that a urologist might easily give up and send you back to your neurologist.

So, this is the position I find myself in now: I am on my second urologist, and my 7th UTI this year. I started self catheterizing about a month ago, which is the therapy we chose to try to beat back the infections. Self catheterization can also cause UTI. I also started a two-week course of estrogen, which has been shown to help women who get repeated UTIs. I got another UTI, mid-estradiol therapy, of course right before my urologist left town for a month. Reading the study more carefully, I realize this is a solution for post-menopausal women, which I am not quite.

So I am going to get my papers in order and try the injections of botox into the bladder. The injections relax the bladder so emptying is more complete. Incredibly, the side effects are UTI and urinary retention. Yes, seriously.

I have already made an appointment with an infectious-disease specialist, because, as my friend said, “urologists are for big prostates, and you don’t have one.” This article has been kind of depressing to write, as when I started writing I was full of hope for two now tried-and-failed treatment options. Onward and upward to bladder botox and the infectious-disease specialist – stay tuned.

– This article was written by an anonymous brave soul

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4 Responses

  1. Julie Holmes says:

    Botox was/is a life changer. It really has made the world of difference to me. If you need any info or advice feel free to reach out anytime. I know the first time can be scary…

    • schroederra says:

      You already did, Julie. I am seeing the NYP urologist you recommended at the Cornell Judith Jaffe MS conference. I am getting there…

  2. Deb says:

    I had a EStim implanted for bladder control in October. I had 12 UTI’s so far this year before the implant. As of today, not a single UTI or problem since the surgery.(very simple out patient surgery) Just something to look into with your Urologist.

  3. schroederra says:

    Thanks, I will. Right now I think I want to keep myself uti clear with botox and disposable single use self cath. But will definitely discuss e stim. Did it reduce the pants peeing?

Leave a Reply to Deb