“This is an intimate, dark, shaming space”: Lived experiences of urogynaecological symptoms and help-seeking

Conference:

SAPC ASM 2023 - Brighton

Talk Code:

4E.3

Presenter:

Abigail McNiven

Co-authors:

Francine Toye, Sabrina Keating, Sharon Dixon

Author institutions:

Nuffield Orthopaedic Centre, Oxford University Hospitals Foundation Trust, Oxford, UK, (F Toye) Medical Sociology and Health Experiences Research Group, Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.(S Dixon, S Keating, A McNiven)

Problem

Urogynaecological conditions, such as pelvic organ prolapse and urinary incontinence, are common and impactful. Lifestyle advice, conservative and surgical treatment options are available, but many women do not come forward for medical help.

Approach

To understand patient experiences of urogynaecological symptoms and their bearing on help-seeking in healthcare, we interviewed 74 adults (73 women, 1 nonbinary person), aged 22-85, living in the UK with one or multiple urogynaecological conditions. Data was collected in 2021, and thematically analysed.

Findings

Though barriers to accessing medical care are complex and multifaceted, one significant aspect for patients living with urogynaecological problems is embarrassment. Urogynaecological symptoms involve sensitive or taboo topics in terms of bodily fluids, parts and functions, such as urine, faeces, blood, bladders, uteri, vaginas, and sex.

Additionally, some patients held a sense of inevitability and normality about their experiences, meaning that they did not necessarily know about or see themselves as warranting medical help. Instead, for these individuals, their focus became self-management and limiting lifestyle activities – such as using pads of increasing absorbency, and planning life and activities around a pelvic or ‘urinary leash’.

In the context of a coupling of stigma and trivialisation, patients sometimes found it challenging to create or respond to opportunities to open up to healthcare professionals about urogynaecological symptoms. Patient expectations were often framed by their accumulated experiences of healthcare, especially for women’s health concerns, potentially setting some up to anticipate dismissal or unsatisfactory management. For those who had raised symptoms, initial responses and experiences could reinforce or challenge these expectations.

Consequences

Stigma, taboo, embarrassment, shame, and secrecy were highlighted by participants as shaping their willingness for and experiences of engaging with healthcare. Understanding patient experiences of urogynaecological symptoms and their bearing on help-seeking is especially important for GPs, as they are often the first healthcare professionals that symptoms are broached with. Patient calls for healthcare professionals to “come with us” into “an intimate, dark, shaming space” to discuss urogynaecological symptoms, however, entail challenges. These include balancing tensions between recognising (without inadvertently reinforcing) stigmatised symptoms and ‘normalising’ these conditions (without deeming them inevitable or trivial).

Submitted by:

Sharon Dixon

Funding acknowledgement:

This study was funded by the NIHR Policy Research Programme (NIHR202450) following peer review for scientific quality and priority assessment by patient and public representatives. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. The funders had no role in the design and conduct of the study, including the collection, management, analysis, and interpretation of the data, and preparation and review of the manuscript.