LUTS Talk: MS and Urinary Problems

LUTS Talk: MS and Urinary Problems

Yes, I know all too well how embarrassing it can be to talk about some of our MS symptoms – I’ve even denied having some of them. When I was first being worked up for my diagnosis, the MS specialist asked if I had any problems with urinary incontinence. I hadn’t a clue this might be a part of this disease, and I replied that I had no problems, thinking that was none of his business.

I felt bad about not answering truthfully, so much so that the following day I wrote a message to him and faxed it off. In essence it said, “You asked and I said no, but truthfully I have problems with leaking and more. If you’re going to be my doctor I know I have to be able to answer all of your questions honestly.” Then I went on to apologize and that laid the framework for an open relationship.

It turns out there are a couple problems for those of us with MS that stand out above all the others and are seen pretty much across our community – the first is of course, the dreaded fatigue. But the other one that ranks up there is lower urinary tract symptoms (LUTS).

In a recently published study, Lower Urinary Tract Symptom Prevalence and Management Among Patients with Multiple Sclerosis in the International Journal of MS Care, researchers state “urologic manifestations are one of the most well-known components of the disease, with more than 90% of patients with MS experiencing urologic symptoms 10 years after disease onset. Symptoms relating to the bladder and bowel are often considered to be among the most distressing facets of the disease, and urinary symptoms have been shown to have a detrimental effect on health-related quality of life (HRQOL) in patients with MS.”

Now I know my own problems with LUTS and have been proactive talking about them with my MS doctor and my urogynecologist ever since that first appointment, and I hear and read a lot from others who also have this problem. But I am really surprised at the large number of people with MS who self-reported the issues and the numbers that were reported in this study.

The research team reports a “total of 1052 participants completed the survey; 1047 were included in the analysis. Nine hundred sixty-six participants (92%) reported at least one LUTS, the most common being post-micturition dribble (64.9%), urinary urgency (61.7%), and a feeling of incomplete emptying (60.7%).” Not surprisingly, the highest rated complaints were incontinence and urgency.

This number is huge – 92% of us have at least one problem with LUTS and some of us more fortunate folks have more than one. At one point in time I was experiencing all of these problems – as if my urinary tract system just couldn’t decide which way it was going to misbehave.

What is disappointing in the study, but not surprising, is the lack of conversation between patients and neurologists about LUTS. I know how difficult it was for me to begin this talk with my doctor, but at least he asked me and tried to open the conversation. According to this study, the researchers state “health-care providers (HCPs) may be focused on treating the neurodegenerative symptoms of MS, LUTS may be overlooked, and as such, may not be adequately and properly managed.”

In this study group, 680 people (out of 996 with problems) actually talked about this problem with their doctor, and approximately 70% of that group report they received treatment for their LUTS. The highest rated doctor recommended intervention was the advice to reduce fluid intake, followed by pelvic exercises.

Unfortunately, the numbers work out that almost 30% of the study participants reported they had some type of LUTS but had not received treatment at all. Why? Mainly because they didn’t talk about this with their doctor. Some of the reasons given include: “symptoms were not serious enough. Other reasons cited by participants for having never tried any treatment included no prescription offered, lack of knowledge about treatment availability…”

The researchers note that “Studies in the general LUTS population have found that patients often do not report their symptoms for a variety of reasons, including embarrassment, fear of being placed in a nursing home or of surgery, or a belief that it is a normal part of aging or that there is no treatment available.” The researchers think for people with MS, some of this may be true but they also mention the possibility we feel we are already taking too much medication and don’t want more.

It appears there are multiple factors at play – our doctors don’t routinely ask about LUTS and we don’t speak up, either. Whatever the reason, I’m sharing this because it is important to know you are not alone, you don’t have to deal with LUTS on your own, but you do have to be willing to talk about it.

Wishing you well,

Laura

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. Khalaf KM, Coyne KS, Globe DR, Armstrong EP, Malone DC, Burks J. Lower Urinary Tract Symptom Prevalence and Management Among Patients with Multiple Sclerosis. International Journal of MS Care. 2015;17(1):14-25. doi:10.7224/1537-2073.2013-040.

Comments

View Comments (7)
  • thumper
    3 years ago

    This is a problem that can cause Serious Consequences to M.S. patients. I know this by Experience. Bladder Issues were my first symptom, I had weakening in the Bladder due to Numbness I experienced from my first Exasperation. I was’nt able to fully empty my Bladder and was getting infections Alot. Havoc was when I would run a fever! I eventually saw a Good Urologist who suggested using Catheters! He probably saved my life,cause at that time I was pretty sick. Since then I have’nt had a Bladder Infection in years!Yes, it was de-grading to talk about,but at that point “I did’nt “Care”! I hope by sharing this information somebody will benefit from it.

  • JULIE SAVENE
    4 years ago

    I have an overactive bladder-I have to wear a poise pad 24/7 because I can go at anytime. My husband asked me how it felt to’go uncontrolably’ & I told him it was ‘very humiliating’ even though no one else knew. My neuro wanted me to get a 2nd opinion on my ‘problem’ because he was not sure of my urogynacologist’s solutions (also I think it had something to do with the new hospital organization?)

    I have been on medication for @ 5 years and can’t function without it. The new urologist gave me options to think @ for the future: Botox or Electric stimulation…..

    Luckily I am not there yet, but it is always nice to hear that I am not alone with this problem.
    Thank you all

  • Rich
    4 years ago

    Like mentioned, my problem is not overactive, but no muscles. I suppose it would work with either condition. When my urologist gave me the choice of options after my TURP surgery, she mentioned 2 things. She said a stimulator, (to test to see if it would work for me was $100, not covered by insurance), which would be inserted surgically, the other being the cath, She also wanted to do surgery to remove a diverticulitis. Either of the other choices would be invasive surgery. So I went with Cathy.

  • Tripping on Air
    4 years ago

    I can totally relate to this and am trying to change the conversation as well.
    This is my experience with LUTS. It has a (mostly) happy ending.
    http://alicetrippingonair.blogspot.com/2015/07/honey-i-peed-bed.html?spref=bl

  • Rich
    4 years ago

    Mine is a symptom that you don’t hear about much. No leakage at all. A sudden urge happens, I better have myself in a restroom. Trouble is, the MS has shut down my bladder muscle, I only have abdominal muscles to do it with. The solution for me is to self-cath 3 or 4 times a day. Use one shortly after getting up and I’m good until noon. Likewise before bedtime, depending on how much coffee I’ve had, I’m good until morning. I keep a couple spares in the car and my coat pocket, just in case.

  • Lisa
    4 years ago

    I’m right there with you. I have had to self-cath almost since my diagnosis in 1999. In fact, mysterious urinary tract symptoms were what finally led to my diagnosis. I felt like I had a UTI, but I didn’t. I get annoyed every quarter by the survey I feel out for NARCOMS when they ask about urinary symptoms and ask if I have normal urinary function (even if I self-cath. What about self-cathing is normal?

  • Octavian
    4 years ago

    I find it interesting that PTNS-Percutaneous Tibial Nerve Stimulation is very rarely mentioned when discussing this ubiquitous problem. Successfully used in Europe for both bladder and bowel problems. It is FDA approved, can be billed to insurance and can be done externally (no need for that implanted pump). When I brought it up to my doc, he showed me where to place the electrodes and I used a TENS unit. Please check it out.

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