Women with neuromuscular disease struggle to urinate when not home

Small study in Denmark calls for public health initiatives to ensure accessibility

Lindsey Shapiro, PhD avatar

by Lindsey Shapiro, PhD |

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Women with neuromuscular diseases in Denmark reported significant challenges in urinating outside of their own homes, leading to avoidance of urinating or drinking in public, according to a recent interview-based study.

The findings emphasize a need for public health solutions to make it easier for women with disabilities, including those with spinal muscular atrophy (SMA), to urinate outside the home and avoid the negative health consequences of holding in their urine.

“There is a need to find solutions that make it possible for women with NMD [neuromuscular diseases] to live independently and allow them to remain active and participate in all aspects of life and not have to depend on adequate toilet facilities and/or assistance from others,” researchers wrote.

The study, “Challenges Faced by Women With Neuromuscular Diseases When Having to Urinate Away From Home,” was published in Global Qualitative Nursing Research.

Neuromuscular diseases are a broad group of conditions that affect muscle strength and function. In SMA, the progressive degeneration of the nerve cells that control voluntary muscles leads to symptoms such as muscle weakness and wasting.

Difficulties with sitting down and standing up can make it harder for women with SMA or other neuromuscular disorders to urinate, especially in settings away from home where they might not have their usual accommodations.

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Holding in urine for long periods raise risk of complications

These challenges may cause them to hold in their urine for longer periods of time, raising the risk of complications such as incontinence (urine leakage) from a full bladder or urinary tract infections. Urinary difficulties may also impair social functioning and a person’s ability to participate in daily life activities.

The goal of the recent study was for researchers to learn more about the challenges women with neuromuscular diseases face in urinating when away from home, which has been an understudied issue.

Online semi-structured group interviews were conducted with 12 women with neuromuscular diseases at a rehabilitation center in Denmark. All had impaired gait function, three of whom were still able to walk (ambulant).

Patients were asked to rate the problem of having to urinate when away from home on a scale of 1-10, with 1 being no problem and 10 being a serious problem. Non-ambulant patients on average rated the problem as an 8, and ambulant patients reported it as a 5.5.

Difficulties urinating in public arose from physical issues, like muscle weakness, balance problems, or sitting on the urethral opening for non-ambulant patients, as well as a lack of public facilities designed to be accessible to people with disabilities.

Refraining from urinating due to these challenges was associated with issues such as incontinence, infections, or bladder spasms. Some women tried to avoid urinating by not drinking, leading to dehydration, dizziness, and fears about more serious bodily consequences later on. Urinary incontinence ultimately led some women to rely on diapers.

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Women also report psychosocial impacts of urination problems

Beyond the physical aspects, women reported several psychosocial impacts of urinary issues, including inconvenience and dependence on others.

“I didn’t have a personal assistant as a child, and my parents had to help if I had to pee, and it was annoying to others, even if they didn’t say so, I could hear them sighing,” one patient said.

“In that way it is deeply rooted in my mind that having to pee is something you feel a little guilty about, and not something you can accept as a natural need.”

Other psychosocial impacts included fear of stigma, missing out on social participation, the need for obsessive planning ahead, and “pee math.”

“In order to cope, you do pee math, where you drink less and adjust your fluid intake so you can hold your urine longer, and that actually makes you feel bad,” one non-ambulant patient said.

The findings overall demonstrate that women with neuromuscular conditions “constantly repressed the fundamental need to urinate,” and highlight the need for public health initiatives to make sure barriers for urinating outside of the home can be overcome.

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Importance of accessible public bathrooms for people with disabilities

“It is important to raise political awareness on ensuring accessible public disability bathrooms,” the researchers wrote.

Moreover, “nurses and other healthcare professionals can ensure that accessible communication and online information on devices to assist voiding [peeing] is available,” they added.

While the small study brings the issue to light and offers opportunities for progress, the researchers noted a need for studies to investigate the issue on a larger scale.

“The findings will be used in a national survey aimed at revealing the extent of the problems women with NMD face when having to urinate away from home,” the team concluded.

The study was funded by the Novo Nordisk Foundation.