The Right To Live Without Leaks – Dismantling Stigma Around UI

By Jessica L. McKinney

What does urinary incontinence have to do with human rights? 

Yes, you heard me correctly!

According to the United Nations, human rights are inalienable, and thus apply to everyone, ranging “from the most fundamental to those that make life worth living, such as the rights to food, education, work, health, and liberty.” In relationship to women, it has been said by political leaders, scholars, activists, and organizations around the world that “Women’s Rights are Human Rights.” One such reputable organization, Amnesty International, states “We are all entitled to human rights. These include the right to live free from violence and discrimination; to enjoy the highest attainable standard of physical and mental health; to be educated; to own property; to vote; and to earn an equal wage.”

Pivoting, a key thing to note about urinary incontinence, the technical term for “bladder leakage”, is that treatment options exist. Many treatment options, in fact, ranging from exercises and behavioral changes to medications to surgery. It’s a condition that disproportionately affects women yet 60-75% of women who experience UI are not getting treatment.

Many don’t initiate what are termed “care-seeking behaviors” on their own – things like searching online for treatment and proactively discussing it as a health problem with their healthcare provider. Many are also never asked about their symptoms proactively by their healthcare provider – something over 50% of women cited as a reason they didn’t discuss their UI with their HCP – or provided credible health information about UI and offered treatment guidance once UI is discussed.  

Additionally, many providers know what UI is, but are not educated about it and its treatment options sufficient to know what to do about it and thus how to be helpful. This risks that HCPs themselves perpetuate myths that normalize UI or further delay care-seeking. And to generalize, the longer you wait to treat UI, the worse it gets, and the harder it is to effectively treat it. So to return to and slightly expand upon my first statement, the non-treatment of UI for women IS an issue of rights – human rights and thus women’s rights.  

UI is a health condition. It may not be a disease the way the lay or medical establishment thinks of cancer as a disease, but it is far more than nuisance or affliction – both terms I’ve heard applied by individuals in the health professions. It is a health condition! It is associated with depression, anxiety, decreased work productivity, decreased physical activity levels, decreased sexual function, decreased physical function (especially in older age), nursing home admissions, and frequently co-occurs with other pelvic floor disorders, such as accidental bowel leakage (aka fecal incontinence). Most UI among women falls into three main types – Stress, Urgency, and Mixed UI – and again, treatments exist for these.  

Many posts have been written about “what is urinary incontinence?” along with “why does it happen and what can I do about it?” I’ve written several as have many of my colleagues. Such information is critically important in helping women to ask the right questions and to make informed choices. However, less explored I believe is: “Why are women not accessing and engaged in treatment for UI?” Shining light on this “why” is a requisite for advancing women’s health in this context and catalyzing change.

Why are women not accessing and engaged in treatment for UI? While not exhaustive, the following are building blocks for the conversation.

  • UI affects women in such large numbers that it has been normalized.  Normalization has led to neglect and apathy instead of keeping each woman at the center of her own care. This has happened at the societal level and within the health care system.   
  • Consider for example, UI is associated with pregnancy and childbirth in females AND separately with having prostatectomy in males (removal of the male prostate gland as treatment for cancer). There are ~90,000 prostatectomies performed in the US annually and 3.7+ million live births. And yet, there are more scholarly articles published about postprostatectomy UI than about postpartum UI, reflective of inequity in investment of health care delivery and research for the postpartum population by comparison. Reflective of more, I am certain, but let’s continue….  
  • It is well-documented that the burden of caregiving for children, spouses, and other family and community members is born unduly by women. One effect of this is the de-prioritization by women of their own health needs (de-prioritization is also arguably influenced by the society that expects them to act as caregivers). They self-manage their emerging or progressing symptoms of UI, believing it isn’t “important enough” or a valid enough issue to discuss with their HCP.
  • Furthermore, messages reach women telling them how they can “be free” or “take charge” by managing their UI with protective garments like liners, pads, or adult diapers. This is how women manage for years, per above, and also conflates treatment for or resolution of a health condition with managing it successfully enough that no one knows you have it. An added burden, the cost of protective garments in the US are categorized as “indirect costs”, meaning they are not covered by insurance and the cost falls to the women who are using the products. Women, who in the US economy earn less than men, are recently experiencing increased unemployment or leaving the workforce in the wake of the COVID-19 pandemic (see prior bullet point…).  
  • Inadequate numbers of trained providers in the health care workforce: What this means is that there are more women with UI than there are HCPs to help implement and guide treatment. Experts in the space are calling for innovation in care delivery – such as systematic screening for UI, group-based care and development and implementation of technology-enabled solutions – to scale-up the health care system to adequately meet demand.

The path to the highest attainable standard of physical and mental health should include some knowledge of what that standard could be. If women don’t know that the leakage they experience is treatable and has a clinical name and definition, how are they to know if they want to do something about it. Without this information, how are they able to assign value to it and say whether or not it is impacting their ‘sense of life being worth living’? 

Our world has a long history of withholding information and education from women and has also infused women with a sense of shame about their bodies. I propose that the patterns of gross non-treatment of UI among women has been influenced by these longstanding patterns. They can’t be unwound and righted with one blog post, that is for certain, and I feel the pull toward writing more on the topic.

But for now, allow me to wrap up with the suggestion that a rights-informed approach to UI include health education about continence and incontinence, fostering of bidirectional conversations with HCPs about UI, and mechanisms for (1) letting women know about treatment options, and (2) access to such treatment if she chooses to treat it.  

#NoMoreShame

Jessica McKinney is a career-long women’s health provider (Physical Therapist), educator & advocate with current roles as VP, Medical Affairs and Clinical Advocacy at Renovia Inc., a digital women’s health company, as well as adjunct university faculty, & consultant in global/community women’s health with a focus on fistula care and physiotherapy for women’s health in low resource settings. She previously was Director of The Center for Pelvic and Women’s Health for Marathon Physical Therapy & Sports Medicine and non-physician faculty in the FPMRS fellowship at Mount Auburn Hospital, both in eastern Massachusetts, USA.
You can connect with and follow her on Linkedin, Twitter and Facebook.

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