This is a plain English summary of an original research article. The views expressed are those of the author(s) and reviewer(s) at the time of publication.
Conditions of the female pelvic floor and bladder, such as urinary incontinence (unintentional passing of urine), pelvic organ prolapse (pelvic organ or organs bulge into the vagina), and frequent urine infections can make people feel ashamed and embarrassed, research found. Symptoms could restrict everyday lives, but many people found it difficult to talk about it and to seek care.
Researchers interviewed 74 people living with pelvic floor or bladder problems. Participants found the healthcare system fragmented and difficult to navigate. Some said it was difficult to access the right care, or to be taken seriously, without a medical diagnosis. People wanted clinicians to listen to them, to take them seriously, to be open and honest, and to provide full information. They also wanted care to focus on them as a whole person and not just on their body parts.
These findings could help clinicians to be more aware of the impact of female pelvic and bladder conditions, and help improve women’s experience of healthcare.
More information about urogynaecological conditions, which include pelvic organ prolapse, incontinence, and frequent urinary tract infections, is available on the NHS website.
The issue: are women’s urinary tract and pelvic floor problems overlooked?
Urogynaecological conditions are common and can have a serious impact on everyday lives. Encouraging people to talk openly, without shame, about pelvic and bladder problems can encourage them to come forward for treatment and advice. This may reduce the risk of harm from not telling others, and not getting the help they need.
To better understand these experiences, researchers interviewed people about their condition and their interactions with the healthcare system.
What’s new?
The study included 73 women and one non-binary person from across the UK. They were aged between 22 – 84 years and most were white. All had at least one female pelvic or bladder condition; some (39%) had 2 or more conditions.
The researchers identified several themes, including:
- Impact on my body, my life, and on me as a person. Participants said symptoms including pain were ‘relentless’ and disturbed their sleep and rest. They felt ‘emotionally drained’ and had no respite from their body. Conditions had a negative impact on their mental health, work, social, home, and sex life: “When you’re exhausted…You just want to shut the whole world out and not have anybody come round or anything.” Everyday life was limited; one participant said, “You want to be the fun person that you were and now you’re wrapped up in this miserable cloak that sort of shrouds you.”
- Shame and stigma. Participants felt embarrassed about their symptoms; for example, leaking urine could make them feel ‘unclean’. Some felt ashamed that their body didn’t work properly, or because they felt old. Some felt more ashamed if people linked their symptoms to poor hygiene. As a result, they were reluctant talk to anyone about their condition, even though they knew this would affect their care. One participant said, “Anything affecting your genital tract is kind of a bit of a taboo topic.”
- Feeling lost in the healthcare system. Participants felt the healthcare system focused on finding out what was wrong with a body part rather than focusing on the person. The process of getting a medical diagnosis could be frightening, and sometimes unpleasant. But not having a diagnosis made it difficult to access care, or to make others understand and believe them. Some felt that different parts of the health service did not always communicate with each other: “Having to go through your whole history each time, it’s awful”.
- Need to be valued as an equal. Participants wanted to be treated as an equal partner in their care. They did not want their condition to be treated as if it was just a normal part of pregnancy, childbirth, menopause or ageing and some felt uncared for after giving birth: “…this attitude of ‘you chose to have children’ isn’t fair”. They wanted clinicians to be open and honest, to listen to what’s important to them, and to believe them. Some found online information and support from others with the same problems helpful: “ [I] would not be here today without that valuable support”.
Why is this important?
The research suggests that shame, stigma, and silence can isolate women with pelvic and bladder conditions and prevent them from accessing healthcare. This can harm their wellbeing and recovery. People in the study wanted to be listened to, and to be given information and support. They also wanted to be treated holistically, rather than as body parts.
Open and honest discussions could help women participate in shared decision-making about their care.
Further research could explore whether other groups in the population, for example those in minority communities, have similar or different experiences.
What’s next?
These findings have been used to create a freely-available online resource to enable healthcare users, clinicians, educators and policy makers to see and hear people’s real-life experiences of conditions such as pelvic organ prolapse, urinary incontinence, bladder function problems, bladder pain, and urinary tract infections.
The researchers are working with another team, which is developing a way of measuring health outcomes following surgery for prolapse, incontinence and mesh complication surgery. The aim is to help women communicate the impact of pelvic floor surgery to other people.
You may be interested to read
This summary is based on: Toye F, and others. Exploring the experiences of people with urogynaecology conditions in the UK: a reflexive thematic analysis and conceptual model. BMC Women’s Health 2023; 23: 1 – 11.
Toye F, and others. The experience of women reporting damage from vaginal mesh: a reflexive thematic analysis. EClinicalMedicine, 2023.
Toye F, and others. Understanding primary care perspectives on supporting women’s health needs: a qualitative study. British Journal of General Practice 2023, 73 (735).
MacLellan J, and others. Perimenopause and/or menopause help-seeking among women from ethnic minorities: a qualitative study of primary care practitioners’ experiences. British Journal of General Practice 2023, 73 (732).
Funding: This research was funded by NIHR Policy Research Programme.
Conflicts of Interest: None declared.
Disclaimer: Summaries on NIHR Evidence are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that the views expressed are those of the author(s) and reviewer(s) at the time of publication. They do not necessarily reflect the views of the NHS, the NIHR or the Department of Health and Social Care.
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