Don't Let Urinary Incontinence Put Your Life on Hold

There is limited research on urinary incontinence as a symptom of myasthenia gravis (MG). In my experience, not all doctors will associate bladder problems with MG. Still, researchers and healthcare professionals are beginning to listen to patients for whom a significant percentage experience problems with urination.

Myasthenia gravis and urination problems

Those of us with MG may experience loss of bladder control, leaking urine (urinary incontinence or overactive bladder), urinary retention (cannot empty all urine), frequent urge to urinate, excess urinating, or the complete inability to control urination. MG can also be associated with urinating regularly at night.^1-3

While research on the link between bladder problems and MG is scarce, one study found that bladder problems are common in individuals with MG. Urinary symptoms are typically more prevalent in those without acetylcholine receptor antibodies and those whose MG appeared after age 50. Older individuals often experience gaslighting when doctors dismiss urinating problems as age-related. Muscle weakness may also be a cause, but this has yet to be determined.²

Pyridostigmine, a standard MG treatment, also has the side effect of increased urination.⁴

Bladder issues can impact quality of life

People living with MG and bladder problems are prone to feeling embarrassed and suppressed by MG's limits. Poor quality sleep from constantly being woken up, having to pee, or waking up to an accident can impact all aspects of our lives, bodies, and minds.

Peeing your pants on the way to an activity, work, event, or while waiting in a long restroom line is on nobody's agenda. Accidents make our effort to get ready and go out feel like wasted time. It may make us fear we disappointed others in our last-minute cancellation or change of plans. And it is downright humiliating.

Each time we have an ordeal with our peeing getting in the way of life, it hinders us from trying activities in the future. Feeling forced to be stuck at home only adds to the depressing gloom MG may have on us. Yet, there is always that worry about when it will happen next - always searching for the closest bathroom, feeling anxious when you don't know where one nearby is.

Solutions to help the MG pee problem

Peeing your pants can turn your day upside down. But you don't have to let it. Here are some solutions to help with the MG pee problem.

Talk to your doctor

Talk with your doctor about whether frequent urination may be related to pyridostigmine (if you take it.) Discuss the dose you take, the possibility of lessening it, increasing the amounts of your other treatments, or beginning a new one.

Pads and absorbent underwear

Adult diapers, pads, or reusable or one-time-use absorbent underwear make it possible to go out in public without worrying about others seeing pee run down your leg. With an adult diaper or absorbency underwear, you can make it to the bathroom and change into a fresh pair.

Your method of leak proofing is up to your level of comfort, lifestyle, and level of bladder control. Some of us may only be comfortable using a diaper at home or at night. Underpads can be placed under oneself at night for extra absorbency to make accident cleanup less of a mess.

Collection devices

Have complete loss of bladder function? Need something more convenient for drives or a foolproof way to avoid an accident? Try incontinence pants products with a pee collection device - a tube running down the leg, and a bag attached to the leg or ankle.

Portable travel pee cups or funnels are also suitable for drives. They are designed for all sexes and allow you to urinate while sitting in your car seat. Underpads may be used to stay free of spills or drops.

Emergency items

Keep towels and extra clothes in your car. If you are in public, a jacket that you can tie around your waist can help avoid embarrassment if the dreaded leak hits. Keeping pre-moistened washcloths in your car or bag can help counter one of the dreaded parts of urinary incontinence ... the unclean feeling.

Pelvic floor exercises

Anyone, not just those with MG, can experience weak pelvic floor muscles due to not actively exercising these muscles. Pelvic floor exercises can help improve urinary incontinence. It is always a good idea to consult your doctor to see if pelvic floor exercises are safe for you or should be modified.⁵

Ask for help

Bladder accidents can increase your amount of laundry, consuming a lot of energy. Always be bold and ask for assistance. There are also pick-up laundry services or drop-offs that can save your precious energy, especially if you can arrange for someone else to drop off and pick up your clothes.