Friday, March 23, 2012

Multiple Sclerosis Bladder Issues

The Unspeakable Bits; From A Life With MS

Multiple sclerosis bladder “issues” can range from discomfort and annoyance to downright life threatening and they’re not something we’d fit into the “polite conversation” category. These issues, therefore, fall into the “Unspeakable Bits.”

When I wrote “downright life threatening,” I was not being dramatic.  Medical conditions that can result from our unwillingness to speak of and deal with our bladder concerns can cause sepsis, shock, permanent kidney damage and even death. We may giggle or ignore the subject of pee, but we do so at great risk.

If we were to really think about it, a lot must go perfectly right in order for our excretory system to work properly. Most people don’t think about it much after we’ve been potty trained—or maybe in high school biology class—but it’s true and for those of us living with MS it’s worth thinking about.

Symptoms of Bladder Dysfunction

The two main (and opposite) bladder symptoms to show up due to multiple sclerosis can be summed up as:

Overactivity (urgency, frequency, incontinence) and

Underactivity (hesitation, retention, inability to empty)

In both cases it is usually the pathways that connect the brain to the bladder’s sphincter muscle (which opens and closes on command when healthy) that are affected by MS. The nerves that control our bladder (as well as our bowels) are very long, longer than those which control our legs, in fact. It’s no wonder, with so much area to be attacked by MS, that over 80% of people living with this disease report some sort of issue with their bladder

Overactivity of the system can and is usually recognized. If you’re going more often, feeling like everything is normal and then Must Go NOW, or are waking several times in the night to go, then you’re likely to seek help (or at least you are aware that it is an issue).

Odd as it may seem, the next step in overactivity —incontinence—is so embarrassing that some people may be more inclined to see their medical team more quickly with minor symptoms of overactive/spastic bladder then for incontinence. 

We are funny about these things… 

Simply going to the market and picking up Poise Pads or Depends and not telling your doctors about “a little bit of leaking” is equivalent to self-medicating recurring migraine headaches without reporting the symptom. Tell your doctor!
When our symptoms are from underactivity, that’s when many people think everything is fine—or don’t think of it at all.

We can’t know if we’re not emptying fully without having that checked (though frequent urges with small return can be a symptom of underactivity. I know, weird! Going more often can be a symptom of not going enough to empty fully). Not emptying can cause recurrent urinary tract infections (UTIs) and repeated UTIs can lead to more, and permanent damage.

As if these are not enough with which to cope, reduced or total lack of physical sensation in the area due to MS can cause us to not feel that something is going wrong even if it gets serious. Infections can cause dehydration; they can travel up the system to our kidneys and cause fevers that can raise all kinds of havoc with multiple sclerosis.

Awareness & Treatment

Many of us think only (or at least, think first) about pharmaceutical treatments for our bladder issues. As many of our symptoms are shared by an aging general population, we see television and print adverts for drugs that might help. There are other treatments that an urologist familiar with MS might offer.

Exercise of the muscles (men, do your Kegels right along with the ladies!) can help, as can better management of fluid intake and other dietary modifications. Do NOT simply drink less water so you have to pee less frequently. 

Unsupervised modification in this manner can lead to dehydration and that raises its own set of risks.

One treatment option which scares the heck out of many people is (intermittent or continual) catheterization. I suspect that most who do not “cath” just cringed, while those who practice catheterization are expressing relief.

I have not spoken with a single person with MS who self-catheterizes who doesn’t wish that he/she had started earlier for the benefits they have found in the practice. I suppose it’s not unlike putting off using a cane for so long and then realizing that you can walk a distance—with help. “Intermittent self-cathing has cut my tether to the john,” said one man I know about the task.

Now, I’m sure that any one of us would rather not have to look at this as an option.  It’s hard to look at the benefit from the before side of the equation. I’m just saying that the after side isn’t as bad as most of us think.

Hesitancy to begin and interruption while urinating can be signs of reduced control of the bladder.

Time to talk about it!

I am no expert on multiple sclerosis. I am only an expert on living my life with MS. I only have the limited knowledge of my MS bladder issues upon which to draw. I know that the readers of this blog have much more information on living life with MS bladder issues.  I hope that some of you are willing to share!

First we talked about Sex & MS and now the bladder. We might as well round out the “plumbing issues” in next month’s Unspeakable Bits with a blog about MS bowel symptoms.

Wishing you and your family the best of health.


You can follow Trevis via his Life With MS Facebook Page on Twitter and on the “Life With MS” Blog. And also, check out his bi-monthly blog for the UK.

For additional information and resources – including referrals to medical professionals in your area – call an MS Navigator at 1-800-344-4867. The Society’s MS Navigators can also provide you with resources related to bladder dysfunction and MS.


  1. add me to the list of 'afters' who wish they started earlier. my urologist and i went back and forth until i couldnt avoid it any longer.
    we've pretty much paralized my bladder with meds, so self-cathing is a must.
    the sense of freedom and relief that you KNOW when you leave the house you arent constantly thinking, where is the nearest bathroom?
    and to me, caths are so much better than wearing depends.
    there is also now an option to botox your bladder. (my docs call it Neurogenic bladder) it eliminates the need for meds. but must be done every six to eight months, i think. it may be a better option for those who have a hard time with side effects of the meds.
    thanks for the article! i hope more people will be willing to talk to their doctors about it.

    1. To be apart of the Botox study I had to learn to self-cath. So glad I did!

  2. my uro was part of the study for botox for bladder..unfortunately, i didn't qualify to be part of the trial. am glad the FDA has approved and provides for another option one can consider.

    1. As a patient in the Botox study, it is a VERY good thing! Take advantage of this procedure.

  3. I have MS tho I am mobile. And testing has not shown that I retain urine. However, I have chronic UTI's and I can give it no cause except connect it to my MS. Chronic inflamed bladders are a risk factor for cancer.

    I can not even count the number of times I have now had UTI's - well over a hundred. Most people would never have one in their lives or perhaps one or two.


    1. I use herbs to help with my MS, and I've found that olive leaf in capsule form has kept my UTI's under control and gotten rid of many of them, all with the added benefit of not being an antibiotic and all without killing off the "good stuff" my body needs to keep from getting all other kinds of problems. I'm surprised people aren't talking more about herbs, especially when there isn't really anything out there that (to me) is worth taking.

  4. How funny to run across this today, as I'm waiting on a referral to a Urologist for incontinence.

    I woke up one morning, sat up and instantly wet the sheets - a quick call to my neuro and I was put on Detrol LA. All of a sudden, I remembered what it was like to have a full bladder and the need to go! I realized I'd likely been leaking before (instead I thought it was sweat enhancing the typical 'odor' of urine, thinking that I wasn't thoroughly 'wiping').

    Since then, I have noticed I have trouble getting my bladder to release at night before bed (though when I changed the time I took the Detrol LA to earlier in the day rather than later, it helped some), and other times when I ought to go (like before a trip), but without the pressure of fullness, I can't get anything to happen. I literally have to wait for it to fill up, like a gas tank!

    I also regained the sense of when my bladder is full (prompting the thoughts of leaking before the med), but overall have a lack of sensation in other areas (I'll have to go back and read the Sex & MS post) - never a clue if I've a UTI or not, as I rarely run a fever even with an infection.

    When it's full I'll go, but I'm never sure it's emptied out. With regards to lacking other sensations in the nether-regions, my husband has a completely different description of our 'time' together than I do, since the muscles now seem to contract much differently than before, whereas I don't really notice them or get to the same ... uhm, previous high-point of pleasure that we are all very fond of. However, I do feel the Valium-like effects after the act, sometimes, though my husband expresses guilt over not being able to 'satisfy' me, since I can't 'get there' anymore. Or if I do, I don't notice the 'high-point', though the rest is still highly enjoyable.

    And I don't really find myself missing that part of it, though of course if I had my druthers I'd prefer to NOT miss it at all! Plus several other things, of course.