What is the urologist's role in destigmatizing incontinence?

Jai Seth, MD

Urinary incontinence comes with many stigmas, both self-established by the patient and pre-established in society. This can lead to mental anxieties and avoidance behaviors in the patient that only make their condition physically worse.

In an effort to destigmatize urinary incontinence, Jai Seth, MD, discusses why it is important to educate the general public about this medical condition so that it can be normalized rather than stigmatized. He advises clinicians to view this condition as both a physical and mental burden. Seth is a consultant urological surgeon at St. George’s University hospital, London, UK.

What are some of the stigmas surrounding incontinence for men and women?

With stigma, there's 2 main facets. One is what you think other people think of you, the perceived stigma. In other words, the fear of what others are thinking of you. So, if you've got urinary incontinence, you worry about what someone else may think of you if they see or identify what's happening to you. And then also the self-stigma of what you think of yourself. How you view yourself or how you may prejudice yourself, such as seeing yourself as an unhealthy person, or someone who has a disability to some extent. These symptoms can be disabling. I think the stigma largely comes from what [you think] others think of you, and then what you think of yourself.

Generally, a lot of the examination that's been done into this already explores anxieties. There's a lot of anxieties that patients will have with regards to this. Anxieties of having incontinence in a public place and having other people see that or being worried about smelling of urine and other people being able to smell urine on you, which is a concern that a lot of patients report in surveys. Anxiety of going to a new place and not knowing where the toilets are, so you can't map out your journey because you don't know where the toilets are, and you've now lost control of that entire trip or outing. People may avoid new places because they don't quite know where their opportunities are to use the toilet. There’s also the anxiety of being unable to continue or start a sexual relationship or an intimate relationship with someone because they're worried about the events of incontinence during that episode of activity. That can also then lead to isolation or relationship breakdown or other barriers there. These are all quite sad and distressing stigmas that a lot of patients may carry with them. Embarrassment and shame, inability to stay at friends' houses or family's houses, avoidance of long journeys, etc. Some studies have looked into stigma, but a lot more needs to be done to look at the barriers for how patients can overcome this.

How do stigmas surrounding incontinence affect treatment of incontinence?

With regards to stigma affecting the patient's treatments, we need to first of all think about it in terms of how the stigmas may affect someone physically. If you delay treatment, patients tend to say, "I've been managing by not drinking water. I haven't drunk water. I don't hydrate myself because if I drink, I need to wait. Or if I drink, I may leak urine." Avoidance of water is quite a dangerous behavior or coping mechanism because that can cause urinary infections, which in turn may worsen the incontinence episodes. That can cause renal issues and a whole host of cardiovascular issues.

The other thing is that the stigmas lead to a lot of avoidance behaviors, so people may avoid the triggers, which are laughing, dancing, exercising, etc. It's very restrictive and can very much be restrictive on their physical outlook. If they stop exercising, clearly that can affect weight and cause cardiovascular effects. In the more severe cases, if someone's constantly wearing wet continence pads, that can cause skin problems or skin breakdown, and then also that cycle of recurring infections. Physically, the stigmas can have a big knock-on effect and then psychologically, there are the unpleasant feelings: depression, anxiety, feeling helpless, and social isolation. People commonly say that they don't travel because they've got to take lots of suitcases full of pads with them. Also, another massive impact is if patients feel that they can't work or they can't earn. Then they have to give up their job or amend their jobs to a certain extent, which affects them economically. The cost of all the pads, the cost of buying all the containment products, pads, liners, etc. can also significantly stress them. You can imagine how restrictive this is.

What is the urologist's role in destigmatizing incontinence?

As health care professionals, we've got an incredibly important role and responsibility with regards to increasing awareness and education, and then really trying to address the barriers and bring down the barriers. I think we need to talk openly about it not only as medical groups, but also with patients and on patient forums. We really need to nail down the message that this is potentially a normal part of aging. This is normal. This is common. This is very prevalent. It affects all age groups—children, young people, young women who have had children, middle-aged people who may have some neurological conditions, senior men who have got enlarged prostate; a whole host of patients, men and women across all age groups. We should be ensuring that patients don't feel that they're alone in this and that this is prevalent. It affects everyone. It affects regular people, it affects famous people, it affects across all ages. A lot of medical research and effort goes into diagnosing what causes this and then also the treatments and advancements that are being made in this.

Treatments are getting more and more effective, and they're getting less and less invasive, and less intrusive. So, I think it's getting those messages out there. For example, the International Continence Society is a global society and reflects a massive global effort and the coming together of scientists, doctors, nurses, physiotherapists, and pharmacologists that come together to produce outcomes in this field. I think the key is just addressing education and awareness, then talking openly between primary care and secondary care. And then coming into patient forums, gyms and talking to personal trainers. I've had patients or personal trainers say that a lot of the people that they work with are not exercising at all or avoiding exercise because of the concerns of incontinence. There is a lot to do, but we're in a strong position to be having those conversations now.

Is there anything else our audience should know about this topic?

With regards to health care moving forwards, as much as we can do in the prevention realm we need to really be doing. That is education about fluids, the right type of fluids, avoidance of the triggers, like caffeine, lots of sugary drinks, fizzy drinks, soda, diet soda, orange juice, lemonade, coffee, etc. We're not saying cut it out altogether, but it's just having an awareness of what you're drinking.

With regards to work in the community and prevention, we should be discussing weight loss, physiotherapy, and pelvic floor physiotherapy. If patients have these symptoms, it's being aware that there are experts out there who have an interest in assessing and supporting these patients. Whether that's continence nurses, physiotherapists, urologists, urogynecologists, or elderly care physicians who have an interest in continence, there is a community of health care professionals out there and it's getting to them to discuss the options. Patients need to be able to hear the options, what is available, what support is available, and many patients don't access that. That's purely because of either lack of awareness—they're just unaware that these options are available—or those sad feelings of embarrassment that they don't want to talk about. Those are the things that we need to tackle.

I see a lot of patients with this, and I'm quite passionate about getting the message out because when I see patients, they've been suffering for a long time. They didn't know that there was any support available, and their lives have been on hold maybe for a strong period of their life because of it. It's just awareness. It's just getting the message out, and I think we're doing that well now, with regards to openly talking about diversity and mental health. This is a good time to do this now.