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,
Do you have a fear of needles and take medication that requires injection?