Over the past year, I became surprised how many pwMS consider their overactive or neurogenic bladder symptoms as ‘normal’, ‘part of the disease’ or ‘something you have to learn to live with’. I spent many hours explaining pwMS that this is not the case, that these symptoms are, at least partially, treatable, and that treating these symptoms is often more impactful on pwMS’s quality of life in the short term than starting a disease-modifying treatment (DMT) which will mainly impact in the long term. The nasty thing about neurogenic bladder symptoms is that they remind people every day about their underlying condition, can potentially be embarrassing and therefore notoriously stressful. Many pwMS minimise the impact of these kind of symptoms on their daily life. However, there is no reason to beat about the bush: having to go to the loo every hour or even more is horrendous, no matter whether you work from home or have an understanding work environment. It kills your concentration, is a continuous source of distraction and triggers social isolation. Unfortunately, bladder symptoms originate from spinal cord damage and no DMT focused at controlling MS will undo this. Once you are experiencing these symptoms, they are likely to stay. Therefore, the only solution is to acknowledge it’s annoying and stressful, bring it up during a clinic visit with your consultant neurologist or MS specialist nurse and carefully consider the options that are offered.
The question you need to ask your self now is: do I have neurogenic bladder symptoms that are worth mentioning to my consultant/MS nurse? To make sure we are on the same page, these are the symptoms you can expect:
- Hesitancy: When you try and pass urine and nothing happens. These pwMS have to wait for the bladder to open which can be very frustrating and time-consuming.
- Frequency: The need to go to the toilet many times during the day and night. The average ‘healthy’ frequency is usually between six and seven times in a 24-hour period.
- Urgency: The need to get to the toilet as quickly as possible to prevent yourself from being incontinent.
- Nocturia: The need to go to the toilet at night which is often a source of insomnia.
- Dribbling: Involuntary loss of urine immediately after you urinated.
- Incontinence: Losing urine at an inappropriate time, often requiring pwMS to wear costly pads.
- Recurrent bladder infections.
There are many treatment strategies to tackle a dysfunctional bladder. Admittedly, finding the right treatment for your bladder is a trial and error process, and most often we do not get it right from the beginning but persistence gets rewarded. In short, I have listed the different treatment options for pwMS:
- Lifestyle measures
First, consider to stop smoking as nicotine is known to irritate the bladder. Second, reduce alcohol and coffee consumption as both of them affect the kidneys and have them make more urine. Third, bladder retraining has shown to be effective, and involves pwMS voluntarily ‘holding on’, or refraining from voiding with a fairly full bladder for increasingly longer periods of time. In a prospective trial, one month of bladder exercise increased the strength of the pelvic floor and bladder capacity with 20%. Furthermore, the number or times pwMS had to frequent restrooms decreased with 40%, and the number of episodes of incontinence reduced with 86%.
- Medical treatment
There are four different types of tablets that can be used to treat neurogenic bladder symptoms. First, there are anticholinergics, for example oxybutinin, solifenacin (Vesicare) or tolterodine. When using solifenacin, the effect is apparent after using the drug for one week and stabilised after a period of 12 weeks. Hence, 12 weeks is the minimal period you need to try the drug before you know with certainty that it works for you or not. After 12 weeks of treatment with solifenacin in an open-label study, about 50% of people with an overactive bladder became ‘incontinence free’ and about 35% had to urinate less than 8 times per day. The commonest side-effect of anticholinergics is dryness of the mouth and they can make constipation worse. The older generation of anticholinergics (e.g. oxybutinine) are also known to exacerbate cognitive problems, especially if an individual already has cognitive problems because of MS. Second, there is mirabegron (Betmiga) which works by activating the β3-adrenergic receptor in the detrusor muscle of the bladder. In the pivotal clinical trial, mirabegron reduced the number of severe episodes of urgency at least with half. Third, there is a hormone called DDAVP that works on the kidney to reduce it making urine. This is especially useful when pwMS have disabling nocturia. Fourth, we use alpha-blockers (prazosin, tamsulosin and terazosin) for pwMS that exhibit pronounced hesitancy.
- Intermittent self-catherisation (ISC)
The residual volume is the amount of urine left behind in the bladder after you have emptied your bladder, and this is a source of recurrent UTIs as germs have the time to grow wild and freely. If the residual volume is greater than 80-100mL you may need to consider intermittent self-catheterisation or ISC. This procedure involves you passing a plastic tube, called a catheter, down the urethra (the channel you normally urinate down) and into the bladder. The big advantage of this technique is that it allows you to empty your bladder completely at a time that is convenient for you which can be life-changing. It needs to be done at least once every four hours. For some pwMS, ISC is not an option because of upper limb disabilities making it impossible to perform the ISC themselves.
- Intravesical botox infiltrations
Intravesical botox infiltrations paralyse the detrusor bladder muscle turning it into a flaccid bag for urine storage, and literally gets rid of the problem of urgency and frequency. Almost all pwMS who have detrusor botox are using ISC. The botox infiltrations need to be repeated every 6-8 months in hospital. This implied many pwMS unfortunately missed out on this procedure during the recent lockdowns.
- Suprapubic cathether
If all other strategies fail some pwMS may need to be permanently catheterised. This can be done via the urethra or the lower abdominal wall which we call a suprapubic catheter.
In summary, there is no such thing as 100% efficacy when it comes to bladder management. Nonetheless, all these strategies have the potential to make a meaningful impact, and are a crucial step in setting pwMS free mentally and physically. It is a mutual responsibility of the MS team and pwMS to bring this up during a clinic visit, set out a treatment strategy and make it happen because bladder care is self-care!
Disclaimer: Please note that the opinions expressed here are those of Ide Smets and do not necessarily reflect the position of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.