Summary of current research
Exploring pelvic organ symptoms in people with neurological conditions study
Pelvic organ problems (bladder, bowel and sexual) are very common in people with neurological conditions. When assessing people with neurological conditions and pelvic organ problems, often the mechanisms are not fully considered by healthcare professionals.
We are developing an assessment tool to help healthcare professionals identify the mechanisms causing symptoms. This will improve their overall evaluation and management of these very bothersome symptoms.
We are completing interviews with people who live with a neurological condition and pelvic organ problems to help develop the new assessment tool. If you would like to consider participating, please access the Participant Information Sheet to find out more about what would be involved.
The participant information sheet can be accessed here.
Shy bladder syndrome
What is shy bladder syndrome? Also known as paruresis. It is an inability to pee when we think other people may see or hear us. It’s often also called shy bladder, bashful bladder, pee shy or stage fright. It is recognised as a social anxiety disorder which affects both men and women, of all ages. It causes them to avoid situations that make it difficult or impossible for them to be able to pee. For more information, visit the UK Paruresis Trust.
Resources for GPs treating men with urinary symptoms
Lower urinary tract symptoms can significantly affect quality-of-life. For male patients, conservative treatment such as fluid advice and behavioural modification is needed for treating the symptoms and should be done before considering prescribing drugs. The TRIUMPH study was a large study about treating urinary symptoms in men in primary health care. It was Published in the British Medical Journal in November 2023 and demonstrated that conservative interventions can improve symptoms for a long time. In order to have a wider impact on care of men with these symptoms throughout the National Health Service, the relevant assessment and treatment information is being provided for free through this website and in other places. The website is under development with funding provided by the National Institute of Health Research, the organisation that supported the TRIUMPH study. For now we are able to offer a PDF version of the booklet that men were given. Content will be enhanced over the coming months to include the materials that nurses used for assessing men and deciding what to recommend each should focus on.
The TRIUMPH paper published in the BMJ can be accessed here.
The booklet used by the men can be accessed here.
We are applying for funding to run an equivalent study for women with urinary or bowel symptoms, particularly aiming to help women in underserved communities where access to healthcare is limited.
Planning Appropriate Nocturia Evaluation and Treatment
The need to pass urine when trying to sleep is a particularly problematic urinary symptom. Healthcare professionals call this nocturia, and severe nocturia can badly affect someone’s quality-of-life. Simple self-management advice can sometimes make a difference, but a surprisingly large number of health issues also contribute to this symptom, thus requiring appropriate care and referrals. We recently published a paper aimed at healthcare professionals, which summarises the potential influences. Our current work is developing practical guidance directly available to healthcare professionals to help them work out what is going on for each patient they see complaining of nocturia.
The research described above was kindly funded by the National Institute of Health Research (grant numbers HTA 16/90/03 and RfPB PB-PG-1217-20034), and the Rosetrees Trust/ John Black Charitable Foundation (grant number PGL21/10038).
The PLANET paper published in European Urology Focus can be accessed here.
The material developed to support healthcare professionals in assessing patients with Nocturia (including a patient questionnaire and bladder diary) can be accessed here:
Let’s talk Bladder – don’t be shy
Anyone interested in cutting-edge aspirations to improve clinical care of Bladder and Bowel problems in Neurological disease is welcome to look at Prof Marcus Drake's Innaurgal Lecture “Let’s talk Bladder – don’t be shy” on YouTube. Watch the recording here.