More than a leak - The psychological impact of incontinence and how can patients be better supported

Incontinence is more than just a physical inconvenience—it can deeply affect a person's emotional and psychological well-being. Myra Robson delves into the often-overlooked mental health challenges associated with bladder and bowel issues. Drawing from her extensive experience, Robson emphasizes the importance of open conversations and comprehensive support for those affected.

Key Points

• Prevalence and Misconceptions: Stress urinary incontinence is common post-pregnancy, while mixed-type incontinence often affects older adults. Many mistakenly believe incontinence is a normal consequence of childbirth or aging, leading to underreporting and lack of treatment.
• Emotional and Psychological Impact: Incontinence can lead to feelings of shame, embarrassment, and loss of control. Bowel leakage, in particular, poses additional challenges due to its detectability, significantly affecting self-esteem and personal identity.
• Barriers to Open Discussion: Societal taboos and personal discomfort make it difficult for patients to discuss intimate health issues. Healthcare providers may also lack the training to address these topics sensitively and effectively.
• Strategies for Improved Communication: Encouraging patients to document symptoms and complete questionnaires can facilitate discussions. Healthcare professionals should receive training to confidently address intimate health concerns and recognize diverse definitions of sexuality to provide inclusive care.

Tell us a little about yourself and what inspired you to pursue this field?

I am a pelvic health physiotherapist and was inspired to do this work back in the late 90’s, when I attended a day course by one of the legendary leaders in our field (the late Jo Laycock) and just felt everything click into place.

What are the most prevalent bladder and bowel problems you see in women today, and why do you think they’re often overlooked?

In my team, it is probably a mix of stress urinary incontinence, which is so common after pregnancy and childbirth or urinary incontinence of mixed type seen in older, frailer adults. I think, without a doubt, that they are often overlooked because people still believe incontinence is normal after childbirth and an inevitable part of ageing – neither of which is true.

How do bladder and bowel issues affect mental health and emotional wellbeing?

Leaking is simply miserable. We are brought up to open our bowels and bladder in private, and leaking just is not a part of that. People feel ashamed, dirty, out of control, embarrassed…all sorts of things. Bowel leakage is particularly challenging for many as you cannot disguise the smell in the way you can with urinary leakage. Incontinence affects self-esteem, confidence, and your identity in so many ways.

Why is it so challenging to discuss intimate health? How can both patients and healthcare providers foster open conversations to ensure proper diagnosis and support?

I think it is so important to ask everyone, when you see them for a pelvic health condition, how their symptoms impact their sex life. I think patients can really benefit from noting down symptoms, using a diary or checklist, or completing a questionnaire to support dialogue. Healthcare providers need support and training to enable them to discuss intimate health with confidence – it is rarely easy for anybody! It is also important to be open minded abut what sex and sexuality is, as we all have inherent biases which can inadvertently skew our conversations. For example, it is so common to think about “sex” as male-female penetrative vaginal sex when that may not be what “sex” means to the person in front of us.

What are the main challenges healthcare professionals face when supporting patients with intimate health issues?

I strongly believe that staff working in this field should choose to do so – it is not always easy having discussions around pelvic health and staff need to feel comfortable with what they are doing. I started my role by being told I needed to treat the “leaky ladies” in the absence of another member of staff and I was terrified at the time – which is why I took myself on a course! I also strongly believe in the importance of training, supervision, time to reflect and review your work, and share your learnings with others. The NHS in particular is under immense strain and high quality care needs to provided efficiently. For this, you need staff who are invested in and whose cup is as full as possible as we are emptying them out faster and faster!

How can we enhance early intervention and care pathways for chronic bladder and bowel conditions?

We need to empower people with the knowledge that leaking is “common not normal” and that it is vital to know what your normal is. This applies to your bowel movements to the look of your vulva, and everything about how your body works. We then need to promote simple and straightforward ways for people to access the help they need. Self-referral to pelvic health services is a great start!

How can we help women feel more confident in seeking help for bladder and bowel issues?

I believe we need to teach children how all parts of their body work and give them the right vocabulary to voice concerns. Talk about anatomy in anatomical terms!  Women often don’t know the difference between their vulva and vagina, which makes it hard to vocalise an issue.

What does the science say about the link between bladder health, microbiota, and overall quality of life?

The science is very interesting and more links are appearing between microbiomes and bladder and bowel health. I can see this to be an expanding area. It really reinforces some of the behaviours that we have seen in the past as being potentially negative ones. One of my personal bugbears is the widespread availability of thrush medicines that women use frequently, when this may be harming their microbiome and also delaying correct diagnosis and treatment.

Role of lifestyle changes: Can lifestyle changes effectively manage bladder and bowel symptoms, or do we need more targeted treatments?

We are seeing increasing evidence that the body works as a unit and that simple changes such as improving your sleep hygiene, a good diet and movement that you enjoy can have a positive impact on everything! Sometimes it is basic things that make the biggest difference.

Myra Robson, is a pelvic health physiotherapist and Clinical Lead at Lewisham and Greenwich NHS Trust and founder of Squeezy an app designed to help people with pelvic floor exercises.