Impact of recurrent urinary tract infections on women: a qualitative study

Margaret Glogowska; Michael Moore; Alastair D Hay; Christopher Butler; Gail Hayward

doi:10.3399/BJGP.2025.0699

Abstract

Background Many women experience recurrent urinary tract infections (rUTIs) yet their significance for the women affected is poorly described and understood.

Aim To explore women’s experiences of rUTIs and the impact on their lives.

Design and setting A qualitative study embedded in a randomised controlled trial (RCT) of D-mannose with women with clinically defined rUTIs in England and Wales.

Method We conducted semi-structured telephone interviews with 32 women who participated in the RCT. Interviews were audio-recorded and transcribed verbatim. Data were analysed thematically.

Results Women reported how the experience of rUTIs was burdensome with distressing and debilitating physical symptoms and wider disruptive effects. Women expressed how rUTIs had an impact on different stages of their lives and we identified two types of impact. Internalised impact included the women’s emotional response to rUTIs, dread of a recurrence, and maintaining readiness to manage it. Externalised impact encompassed actions in response to rUTIs, including remaining extremely vigilant about recurrences and seeking help as soon as a recurrence was suspected, and the challenges they faced. The women explained how the responses of healthcare professionals (HCPs) when they sought care affected their help-seeking and their self-esteem, and could leave them with a sense of helplessness.

Conclusion Experience of rUTIs has taught women to be vigilant and proactive about the condition but this was not always matched with understanding and validation on the part of HCPs. When women experiencing rUTIs seek care, clinicians could usefully consider the patient’s broader experience of rUTIs, including internalised and externalised impacts.

How this fits in

Although there is research evidence about women’s experience of isolated uncomplicated UTI, there is a dearth of evidence about how recurrences are experienced and their impact, especially among women who meet the clinical definition of having an rUTI. Our study identified how women experienced debilitating and distressing physical effects of rUTIs but also how there was a wider impact on them. Emotional impacts of rUTIs included fear and dread about a recurrence, feeling controlled by these infections, and therefore needing to remain vigilant and proactive in trying to manage the recurrences. They did not always feel that this position was met with understanding and validation by the healthcare professionals they consulted, which further affected their self-esteem and could leave them with a sense of helplessness.

Introduction

Urinary tract infections (UTIs) are the most common bacterial infection affecting women presenting to primary care in the UK.^1,2 It is estimated that between 40% and 50% of women experience one UTI episode over their lifetime.^3,4 In an English population-based face-to-face survey, 37% of the women taking part reported having a UTI at some point in their lifetime, with 29% of those taking part reporting ≥1 episode. In the year leading up to the survey, 11% of the women who took part had experienced a UTI, with a further 6% reporting ≥1 episode and 3% reporting ≥3 in that time period.⁵ Recurrent UTI (rUTI) is defined as three UTI episodes in the previous 12 months or two episodes in the previous 6 months.^6–8

Uncomplicated UTIs are sometimes considered ‘minor and self-limiting‘.⁹ However, survey and qualitative research has identified a wide range of symptoms beyond the cardinal symptoms of dysuria, frequency, and urgency of urination.^10,11 Fever, exhaustion, and systemic illness were frequently experienced during episodes. Other qualitative research highlighted how UTIs have an impact on women’s psychological health, as well as their daily lives, social, and sexual relationships.¹² A recent systematic review found that the experience of rUTI was like that of a chronic condition, affecting many areas of women’s lives.¹³ An analysis of naturalistic data from a publicly accessible internet forum supporting women with cystitis confirmed the diversity of symptoms reported, the disabling nature of rUTIs, and great variation in the care and support received from GPs.⁹ However, rUTI remains considerably underresearched, with limited evidence on the meaning and significance of frequent UTI recurrences. We therefore conducted a qualitative interview study of women’s experiences of rUTI and its impact – the first, to the authors’ knowledge, in the UK to explore the experiences of women with clinically defined rUTI in primary care – with our aim being to understand the condition better to improve the care and support offered to the women affected by rUTIs.

Method

This study was embedded in a randomised controlled trial (RCT) of D-mannose in the UK,¹⁴ in which women with clinically defined rUTI were randomised to D-mannose (a monosaccharide isomer of glucose with some early evidence of benefit in prophylaxis of rUTI) or placebo. All trial participants were asked for their consent to be contacted about participating in a qualitative interview study. Of those who agreed, a purposive sample was selected to ensure a range of ages and diversity across the broad spread of geographical locations where the 99 primary care centres in England and Wales who recruited for the trial were located. Women received written information about the interview study and had the opportunity to ask questions. Those who consented were interviewed by telephone shortly after completing their participation in the trial.

Interviews took place from December 2019 until August 2020 and were carried out by the first author, a female health services researcher with extensive qualitative research experience. All interviews were conducted using a topic guide (Supplementary Supplementary Information S1). In the interviews, we explored other topics around rUTI as well as its impact on the women, including their experiences of being in a trial, and taking a daily supplement for prevention of rUTIs, but those are not reported here. The interviews were audio-recorded and transcribed verbatim by a professional transcriber.

Thematic analysis began when the first four interviews had been transcribed. The transcripts were read by the first author and the senior author; initial themes were discussed and further issues for inclusion in the topic guide were decided. Systematic open coding of the transcripts was then conducted by the first author using NVivo 12, with the resulting coding framework undergoing iterative development and refining. There was ongoing discussion between the first author and the senior author regarding the developing coding framework and the senior author reviewed all the subsequent transcripts. A further 28 interviews took place between March and August 2020. No new codes were added after Interview 19 and at the point where interviewing stopped no new information was emerging and there was sufficient explanation of the issues.¹⁵ Duration of the interviews ranged between 26 and 94 min. Coding of the transcripts continued alongside data collection.

Relationships between codes were then determined that led to the development of categories (provisional groups of codes) and eventually themes, which were shared and discussed with the wider research team. This included patient and public involvement contributors and a representative of a charity supporting women with bladder conditions, who all had lived experience of rUTI. They advised us throughout on issues such as study design, patient-facing materials, and recruitment, and then discussed analysis of the data with us to ensure the credibility and confirmability of our findings.¹⁶ We employed a constant comparison strategy in the analysis,¹⁷ checking if categories developed in one part of the dataset were present in another part and ensuring that all the data were comprehensively explored.

Results

Sample

Thirty-two women participated in the interviews. Our purposive sample was balanced across a wide age range (19–81 years) and as wide a range of participating practices as possible (28 practices). When telephoned about participation in the study, only two women declined. Characteristics of our sample are displayed in Table 1.

View this table:

Table 1. Interview participant summary

The interview data identified the major impact of rUTIs on women, with two thematic dimensions to the impact experienced, summarised in Box 1.

View this table:

Box 1. Thematic dimensions

Internalised impact of rUTIs

The interviews demonstrated the considerable internalised impact of the rUTIs — how the women felt about the infections and how they thought about themselves in response to rUTIs.

Emotional impact

The women’s accounts revealed an intense emotional response to rUTI, including fear and dread about recurrences:

‘Well, as soon as I feel that there is an infection, I take them [over-the-counter cystitis powders] right away because my fear became kind of overwhelming because it is so awful.’ (Interview [Int] 2, 66–75 years, 3–5 UTIs in 6 months prior to trial)

They could feel controlled by the recurrences:

‘It just controls my life on a daily basis. I think it doesn’t help because obviously in my mind as well, I'm probably thinking, “Oh, am I going to get one today?” … “Am I going to be OK today?”… Because one minute I can be fine and then the next minute …’ (Int 6, 26–35 years, 1–2 UTIs in 6 months prior to trial)

Some women worried about the effects of the recurrences and feeling ‘reliant’ on antibiotics to resolve the infections:

‘But I always was terrified in case if I couldn’t get rid of it, was it going to affect my kidneys, was it going to affect my liver or anything else as well, you know. Because you don’t know what the long-term prognosis is.’ (Int 22, 46–55 years, 1–2 UTIs in 6 months prior to trial)
‘But I've become dependent on them [antibiotics] which is bad … Why I've become really dependent on them because I'm just scared all the time really.’ (Int 6, 26–35 years, 1–2 UTIs in 6 months prior to trial)

Embarrassment was a common feature of the women’s experience:

‘the first thing we notice is ... the smell because I used to get really embarrassed going to the loo at work or at Uni or at school ... it just smelled really bad.’ (Int 25, 19–25 years, 3–5 UTIs in 6 months prior to trial)
‘I was actually away with a group of girls … that was painful/embarrassing, but they all sort of knew because they're all ladies. “Oh, she’s off to the loo again”.’ (Int 26, 56–65 years, 3–5 UTIs in 6 months prior to trial)

Women’s views of themselves as UTI ‘sufferers’

The interviews demonstrated how the women questioned the validity of their experience of the condition. Several of the women wondered why their experience of UTI was more painful and difficult than that of other women they knew:

‘other women have it, but then sometimes it’s frustrating because they say they have it and then they keep going and doing stuff, and I'm like, “God, I can't; I'm literally crippled …” that used to frustrate me a bit because I said, “Why am I getting it worse, what am I doing wrong?”.’ (Int 30, 46–55 years, 3–5 UTIs in 6 months prior to trial)

Their situation also made them feel judged, when others, including family members, did not believe a UTI could make them feel so unwell:

‘Like I think people [think ...] a water infection’s a water infection, get on with it; like that’s how I feel people [think].’ (Int 20, 19–25 years, 6 or more UTIs in 6 months prior to trial)
‘Well my mum … has had two [UTIs] and she'd never ever had them before. She’s, “Now I know what you were going on about when you wasn’t well” … even she didn’t understand, you know.’ (Int 22, 46–55 years, 1–2 UTIs in 6 months prior to trial)

Among the women there was reflection about whether they qualified as an rUTI ‘sufferer’. This was particularly the case where they judged themselves as suffering less than others:

‘I mean I don’t think I've had it as badly as some people get it, but when you do get it it’s not something you can forget about.’ (Int 13, 66–75 years, 1–2 UTIs in 6 months prior to trial)

For one woman an invitation to take part in the trial from her GP was felt to be a validation of herself as someone who suffers with rUTIs:

‘Like when I got the letter about taking part … I was like, “Oh, my god, like they’ve chose me, like wow,” like I was like really happy … I felt quite special because I thought, “Actually, someone’s realising how many water infections I do get”.’ (Int 20, 19–25years, 6 or more UTIs in 6 months prior to trial)

Women’s actions as ‘triggers’ for rUTIs

The women also examined what part their own actions and behaviours had to play in rUTI episodes. Mentioned by many of the women as ‘triggers’ were not drinking enough water, drinking alcohol, having sex, the effect of stress, and, more rarely, personal hygiene. Being given information by HCPs about actions and behaviours that might play a part in rUTIs made them feel a sense of guilt that the episodes were because of something they either had or had not done and that they were to blame:

‘I'd have to say some of this is my fault … I know that I need to up my intake of fluids, so that I'm getting a good lot of fluid into me, so I'm passing fluid and flushing my kidneys is the way I tend to think of it. And I know that it’s not my strongest suit.’ (Int 14, 66–75 years, 3–5 UTIs in 6 months prior to trial)

Women also found it difficult that that the self-care advice they had received over the years had caused them to change actions or behaviours that they had been told could trigger UTIs, but it had made no difference to the recurrences:

‘I did go privately to a clinic when I was in my teens, and they said, “Drink lots of water, go to the toilet after intercourse and ... wipe from front to back”. So, I've constantly been doing those for years. I always implement them, but they’ve [UTIs] just never seem to have gone away.’ (Int 29, 36–45 years, 3–5 UTIs in 6 months prior to trial)

Emotional impact of seeking health care for rUTIs

In dealing with rUTIs, the women came into regular and frequent contact with their general practice and other primary care services. Their experiences had engendered a range of feelings about themselves as patients and towards seeking health care. Even when they perceived their general practices as supportive, women felt awkward about repeated requests for appointments:

‘And I think I feel a bit of a nuisance at times, but they're all very good about it.’ (Int 32, 56–65 years, 6 or more UTIs in 6 months prior to trial)

For another woman, getting to know the primary care team was beneficial but did not entirely erase her sense of being a ‘pest’ or a ‘nuisance’ when she needed to be seen frequently:

‘I sometimes feel a bit of a pest … when they open the door and you think, “Ah, thank god it’s [name of GP]”, or “Thank god it’s the other lass”. As it’s them, I don’t need to explain anything because they know, but if it’s another one that I don’t know then you have to go through all the rigmarole again, you know … I feel like I'm a nuisance.’ (Int 22, 46–55 years, 1–2 UTIs in 6 months prior to trial)

Another participant described primary care encounters that had left her feeling that she had not been listened to, where her symptoms were dismissed, where a dipstick test had shown no infection to be present, and which had left her untreated:

‘They wanted me to bring in a urine sample. I'd drunk so much water in the morning and when I gave them a sample it was just clear … And then the next day like I couldn’t go to work because I literally just couldn’t get out of bed, and I called the doctors again and I went in and gave them another urine sample and it was just ... it was just horrendous, and they were like, “Oh, my gosh, I'm so sorry that we left you like this”. Sometimes I feel like I'm not listened to and they don’t really take much notice of it because I think they think, “Oh, she’s had them so many times”, … but it’s annoying when they don’t listen when I'm leaving in pain and they think, “Oh no, she’s fine” … these are my symptoms, they're like, “They're not the regular symptoms”, and I'm like, “Everyone’s different”.’ (Int 19, 19–25 years, 3–5 UTIs in 6 months prior to trial)

Being told she did not have a UTI made another woman call into question her lived experience, which in turn affected her self-belief:

‘Yeh, feel like very disheartened because like I know I've got a water infection; I'm adamant that I've got a water infection … then it makes me feel like, “Oh, am I wasting their time?” like there isn't anything wrong, it’s just me; maybe it’s all in my head, maybe I'm thinking too much about these water infections, is that why I'm getting them or is that why I feel like I'm getting them because then I'm really actually not.’ (Int 20, 19–25 years, 6 0r more UTIs in 6 months prior to trial)

GPs’ lack of validation of the women’s experience of rUTI had resulted in some changing healthcare provider:

‘I was only in my thirties and they said that ... “There is nothing more we can do for you”, and they issued me with some incontinence tablet … at that point I left the surgery and I was crying, and said, “I'm not going back there”.’ (Int 21, 36–45 years, 3–5 UTIs in 6 months prior to trial)

For some women their feelings about consulting for UTIs meant that they avoided seeing their GP and adopted a stance of having to ‘deal with’ UTIs alone:

‘It was like always the last resort. I thought … it would just go and keep going and, you know, I always thought it was something I've just got to live with. You know, people have worse things than this and I just thought, “I've got to just keep going and dealing with it”.’ (Int 30, 46–55 years, 3–5 UTIs in 6 months prior to trial)

Thus, the interviews showed how contact with HCPs could be:

‘[...] quite demoralising actually because it can make you feel depressed because of the pain and because it’s constant when it happens that you feel like ... well, it’s just a water infection, go away, you know. That’s just how it makes you feel and it’s quite horrible actually.’ (Int 22, 46–55 years, 1–2 UTIs in 6 months prior to trial)

This was not the case for all the women. This participant felt supported and appreciative when her GP knew about her recurrences and responded promptly:

‘Usually I can't get an appointment with my doctor … So, someone else checks it or they send it away, ... and then she gives me antibiotics straight away.’ (Int 16, 46–55 years, 3–5 UTIs in 6 months prior to trial)

Externalised impact of rUTIs

The interviews also revealed the externalised impact caused by the rUTI – actions taken by the women in response to rUTIs and the restrictions they encountered.

Impact across the life course

There was considerable diversity in the onset and patterns of rUTI experienced by the women but recurrent infections could span the life course and have a severe impact on women at any stage of their life. For some UTIs began during primary school:

‘So, yes, so I suffered kind of recurrent cystitis since ... gosh, I was really young. I remember having like a free pass at primary school to go to the loo whenever I needed to.’ (Int 1, 36–45 years, 3–5 UTIs in 6 months prior to trial)

The experience of rUTIs adversely affected secondary and university education:

‘What I've gone through...since I was 11 [years], especially young girls [going through this]. It’s unpleasant and, you know, it ... I was hospitalised that’s really like sort of key points of my life … I was doing my O levels, and as a result of being unwell for like eight/nine weeks, they put me down into the CSE grade. So, for me that was disastrous.’ (Int 24, 56–65 years, 1–2 UTIs in 6 months prior to trial)
‘[...] it got to the point with Uni, I was missing hours of lectures by not being able to go, and I was loving all the stuff we were doing as well and it was just ... it just got annoying in the end.’ (Int 25, 19–26 years, 3–5 UTIs in 6 months prior to trial)

The women described the impact on their working lives and career, as well as on family life:

‘I'm only 23 [years]; 24 this year, and I'm just starting out, you know, where I want to go with my career, and with a water infection as well, with histories of those it can be quite difficult.’ (Int 20, 19–25 years, 6 or more UTIs in 6 months prior to trial)
‘[...] it started after I had my son … about six months after he was born, I had a kidney infection; well it’s a UTI that went into a kidney infection and I had to go to hospital … And since then I've probably been having six bad ones a year … usually result[ing] in a hospital stay.’ (Int 15, 26–35 years, 1–2 UTIs in 6 months prior to trial)

Impact of symptoms

For some of the women, some UTI symptoms remained between infections:

‘Normally every day I would always have a niggle [in bladder] … you'd feel something there.’ (Int 29, 36–45 years, 3–5 UTIs in 6 months prior to trial)

Other women, even if they did not experience pain or discomfort between flare-ups, were extremely vigilant about the appearance of symptoms and acting quickly when a new occurrence was suspected:

‘So, within a couple of hours of me noticing it, I get ... it gets very painful … normally if I don’t get antibiotics within that first day, I start passing blood and it also seems to affect my mental capability as well; I get very confused.’ (Int 11, 26–35 years, 1–2 UTIs in 6 months prior to trial)

Symptoms experienced by these women included ‘classic’ UTI symptoms such as dysuria, frequency, and urgency of urination. They also graphically described experiences of loin, abdominal, bladder, and hand pain; other physical symptoms such as fever, exhaustion, uncontrollable shivering, nausea, loss of appetite, tingling over the entire body; and mental symptoms such as finding it hard to concentrate, confusion and feeling ‘muddled’. The women described their symptoms as ‘debilitating’, ‘distressing’, ‘horrendous’, ‘miserable’, ‘awful’, and ‘disruptive’. At the time of the recurrences, many spoke of only being able to lie down or go to bed:

‘When I do have them I don’t go out; I can't move off the sofa or off the bed … that’s not the way you're supposed to live life.’ (Int 10, 19–25 years, 3–5 UTIs in 6 months prior to trial)

Even where women were able to go out, a UTI imposed considerable restrictions:

‘[...] it’s embarrassing. It limits what you can do and where you can go because I also feel I'll need to be near a toilet and sometimes don’t always get there … it does impinge on your life.’ (Int 13, 66–75 years, 1–2 UTIs in 6 months prior to trial)

Receiving treatment, however, could also be challenging and disruptive:

‘They started changing it and saying that I had to go in, that was obviously difficult because of work, trying to get an appointment … one occasion, I had to go just to the treatment centre because I couldn’t get appointments, and I was quite desperate then. I was like, “All I want is just some antibiotics; I don’t want to speak to anyone”.’ (Int 6, 26–35 years, 1–2 UTIs in 6 months prior to trial)

One of the women described a recurrent infection that could only be treated with intravenous antibiotics at home every day for a week:

‘When I was on the intravenous antibiotics … it was great that they'd come to the house … that was day in/day out for seven days … it was the only one that would sort the infection … the only way they could administer it, it couldn’t be done in tablet form.’ (Int 32, 56–65 years, 6 or more UTIs in 6 months prior to trial)

For another two women, rUTIs resulted in regular hospital admissions:

‘I mean every time I end up in hospital I've got ... again, I've got two young kids, my husband’s got to take time off work to look after, so it’s stressful for them and for him.’ (Int 15, 26–35 years, 1–2 UTIs in 6 months prior to trial)

Discussion

Summary

Our findings show the internalised and externalised impacts of rUTIs on women’s lives. Internalised impact arose from the women’s emotional response to an rUTI, with feelings of fear and dread about a recurrence commonly voiced. Externalised impacts could be felt at any period in their life and sometimes the entire life course. Women often found seeking care, and the attitudes of healthcare professionals challenging. UTIs, unlike other infections, often result in women feeling or being made to feel that their own actions were to blame, and shame and embarrassment are commonly experienced. Participants described feeling guilty about consulting frequently about recurrences and self-doubt when consultations and diagnostic tests left them feeling they were wrong about having a UTI or that they should be able to cope with their symptoms.

Strengths and limitations

Qualitative interviews are an appropriate method for collecting data around this very personal condition. Telephone interviewing appeared to enable the women to speak with candour and without embarrassment about sensitive issues. The sample achieved was varied in terms of age, background, and geographical location.

The women we interviewed had consented to participation in the RCT and to randomisation to a daily potentially active prophylactic intervention or placebo. This means that they were already engaged with their health and looking for better ways to manage rUTIs. They were motivated to take part in a trial offering the chance to try a new prophylactic treatment, and this could have meant that their experience of rUTIs was not representative. Also, we did not collect data around ethnicity and levels of deprivation among our participants. We acknowledge a lack of ethnic diversity in our sample, which means that we were not able to explore how women from different backgrounds experience an rUTI, how they seek access to health care, and what impact this has on them. Thus, our findings may not be transferable to a wider primary care population.

Comparison with existing literature

As with previous research,^9,12,18 the women’s accounts showed that physical effects of the infections were distressing and debilitating, as was the lack of acknowledgement of this in consultations, with women with recurrence feeling dismissed by clinicians. However, the accounts also demonstrated how emotions such as fear and embarrassment had an impact on the women. They felt under pressure to ‘normalise’ their experience of a UTI because they were aware that the UTIs experienced by other women had far less impact. There were also wider impacts on how they viewed themselves and the ways in which they sought to manage recurrences, showing their vigilance and desire to be proactive in the face of early signs and symptoms of UTIs. Their stance is then contrasted with situations where they recounted being told a UTI was not present or when they felt their symptoms were being minimised, which had an impact on their self-belief and self-esteem, leaving them with a sense of helplessness.

For many long-term and chronic conditions there is a process that provides diagnosis and confirmation of that illness or condition that is then acknowledged and considered in future healthcare seeking. Diagnosis may be accompanied by relief, as it validates the person’s experiences and reality of the symptoms with which they have been contending.^19,20 An rUTI does not conform to this pattern. Although they can be experienced long term and across the life course, rUTIs can often have an intermittent pattern, with periods of time in between recurrences and women falling in and out of the accepted definition. New models of primary care may make it harder for clinicians to identify these women and develop the type of relationship necessary to deliver the best care for rUTIs.²¹ The women’s narratives also showed how HCPs could be more dismissive because they were experiencing frequent rUTI. This was a situation related by other women who encountered what they regarded as inadequate care when clinicians did not pay attention to the difficulty of their experience of recurrence, repeated information the women had already found unhelpful or impractical, and delayed prescribing of antibiotics.⁹ This demonstrates how HCPs can overlook the whole impact of rUTIs, with women’s experience not merely about having repeated occurrences, a finding echoed among women with recurrent vulvovaginal thrush.²²

Implications for research and practice

When women experiencing rUTIs are seeking care, attention should be paid to both internalised and externalised impacts of rUTIs. Women value HCPs being prepared to accept their experiences and concerns when they seek help for repeated infections. What makes rUTIs particularly disruptive is the unpredictability, which means that women often live in fear of a new episode or an infection that does not resolve, and whether they will be able to access timely care. The limitations of the diagnostic process may also mean that when some women who are hypervigilant about the appearance of symptoms first consult their HCP their urine samples may not yet meet the criteria for acute UTI and women may be left feeling dismissed and unheard.

There is evidence that a diagnostic code is often not recorded for many infections, including UTIs, in primary care.²³ This situation may mean that it is difficult for clinicians who are unfamiliar with the patient to identify previous episodes, such as where a UTI was suspected but antibiotics may still have been prescribed. Although women may move in and out of the definition of experiencing rUTI, at points in their life where recurrences are present the use of such a ‘label’ could mean that clinicians are alert to early presentation for recurrences, allowing for more timely access to antibiotics where required and facilitating earlier offers of prophylactic treatment.

Our study showed that women with rUTIs have information needs that go beyond the self-care advice that may be presented to women when they consult for their first suspected UTI. Materials co-produced by women with lived experience of rUTI and HCPs, such as leaflets or videos, could be important tools in supporting women experiencing rUTIs. Further research among underserved populations is also warranted, as intersecting characteristics such as ethnicity and deprivation are also likely to influence women’s experience of rUTIs and the health care and support they are able to access.

Notes

Funding

This project was funded by the National Institute for Health Research (NIHR) School for Primary Care Research (project reference No. 385). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

Ethical approval

Ethical approval for the trial and embedded qualitative study was granted by South West – Central Bristol Research Ethics Committee (reference number: 18/SW/0245).

Provenance

Freely submitted; externally peer reviewed.

Data availability

The datasets generated and analysed during the current study are not publicly available because participant consent to share the original data outside the research team was not sought but reasonable requests for further information which does not compromise participant anonymity and confidentiality may be obtained from the corresponding author.

Acknowledgements

The authors gratefully acknowledge the women who participated in this study and the patient and public involvement contributors.

Competing interests

The authors have declared no competing interests.

Received October 28, 2025.
Revision received January 19, 2026.
Accepted April 30, 2026.

http://creativecommons.org/licenses/by/4.0/

This article is Open Access: CC BY 4.0 licence (http://creativecommons.org/licenses/by/4.0/).

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4. et al.
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3. Hay AD,
4. et al.
(2023) D-mannose for prevention of recurrent urinary tract infection among women a randomized clinical trial. JAMA Intern Med 184(6):619–628, doi:10.1001/jamainternmed.2024.0264.
OpenUrl CrossRef
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1. Malterud K,
2. Siersma VD,
3. Guassora AD
(2015) Sample size in qualitative interview studies: guided by information power: guided by information power. Qual Health Res 26(13):1753–1760, doi:10.1177/1049732315617444.
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1. Silverman D
(2017) Doing qualitative research: a practical handbook. (Sage Publications, London), 5th edn.
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3. McNiven A,
4. Toye F
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1. Bury M
(1982) Chronic illness as biographical disruption. Sociol Health Illn 4(2):167–182, doi:10.1111/1467-9566.ep11339939.
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21.↵
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2. Engamba S,
3. Khan NF,
4. et al.
(2025) Delivering relational continuity of care in light of recent GP contract changes. Br J Gen Pract doi:10.3399/BJGP.2025.0199, pmid:40744755.
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22.↵
1. Ford T,
2. Talbot A,
3. Hayward G,
4. et al.
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1. Hay AD
(2019) Coding infections in primary care. BMJ 367, doi:10.1136/bmj.l6816, pmid:31826859. l6816.
OpenUrl FREE Full Text

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OpenUrl CrossRef PubMed

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OpenUrl CrossRef PubMed

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Hayward G,
Mort S,
Hay AD,
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OpenUrl CrossRef

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Malterud K,
Siersma VD,
Guassora AD
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OpenUrl CrossRef PubMed

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[58] Siersma VD,

[59] Guassora AD

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Lincoln YS,
Guba EH
(1985) Naturalistic inquiry (Sage Publications, Beverly Hills, CA).

[61] Lincoln YS,

[62] Guba EH

[63] 17.↵
Silverman D
(2017) Doing qualitative research: a practical handbook. (Sage Publications, London), 5th edn.

[64] Silverman D

[65] 18.↵
Izett-Kay M,
Barker KL,
McNiven A,
Toye F
(2022) Experiences of urinary tract infection: a systematic review and meta-ethnography. Neurourol Urodyn 41(3):724–739, doi:10.1002/nau.24884, pmid:35114012.
OpenUrl CrossRef PubMed

[66] Izett-Kay M,

[67] Barker KL,

[68] McNiven A,

[69] Toye F

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Bury M
(1982) Chronic illness as biographical disruption. Sociol Health Illn 4(2):167–182, doi:10.1111/1467-9566.ep11339939.
OpenUrl CrossRef PubMed

[71] Bury M

[72] 20.↵
Robinson I
(1988) Reconstructing lives: negotiating the meaning of multiple sclerosis (Hyman Unwin, London).

[73] Robinson I

[74] 21.↵
Dineen M,
Engamba S,
Khan NF,
et al.
(2025) Delivering relational continuity of care in light of recent GP contract changes. Br J Gen Pract doi:10.3399/BJGP.2025.0199, pmid:40744755.
OpenUrl FREE Full Text

[75] Dineen M,

[76] Engamba S,

[77] Khan NF,

[78] et al.

[79] 22.↵
Ford T,
Talbot A,
Hayward G,
et al.
(2024) Managing recurrent vulvovaginal thrush from patient and healthcare professional perspectives: a systematic review and thematic synthesis. Patient Educ Couns 118:108004, doi:10.1016/j.pec.2023.108004.
OpenUrl CrossRef PubMed

[80] Ford T,

[81] Talbot A,

[82] Hayward G,

[83] et al.

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Hay AD
(2019) Coding infections in primary care. BMJ 367, doi:10.1136/bmj.l6816, pmid:31826859. l6816.
OpenUrl FREE Full Text

[85] Hay AD

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Impact of recurrent urinary tract infections on women

a qualitative study

Abstract

How this fits in

Introduction

Method

Results

Sample

Internalised impact of rUTIs

Emotional impact

Women’s views of themselves as UTI ‘sufferers’

Women’s actions as ‘triggers’ for rUTIs

Emotional impact of seeking health care for rUTIs

Externalised impact of rUTIs

Impact across the life course

Impact of symptoms

Discussion

Summary

Strengths and limitations

Comparison with existing literature

Implications for research and practice

Notes

Funding

Ethical approval

Provenance

Data availability

Acknowledgements

Competing interests

References

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