Urinary Tract Infection Symptom Management in Postmenopausal Women: A Qualitative Exploration

Abstract

Objective:

We sought to complete focus groups with postmenopausal women to discuss their past experiences with urinary tract infections and other lower urinary tract symptoms to source input on how to improve patient care.

Methods:

We convened five focus groups among postmenopausal women with previous experience of treatment for urinary tract infection symptoms. Participants were asked to describe their experiences of urinary symptoms and to make recommendations on how to improve patient education. Three team members read de-identified transcripts of the focus groups, developed a thematic codebook following Conventional Content Analysis guidelines, and coded the data using NVivo software

Results:

Twenty postmenopausal women with previous treatment for at least one patient-reported urinary tract infection participated in five focus groups between February and October, 2023. The average age of participants was 69.1 (SD 10.8). Three overarching themes emerged from analysis of focus group discussions: (1) barriers to effective care and treatment for urinary tract infections and/or other lower urinary tract symptoms, (2) finding relief via referral and guideline concordant care, and (3) the physical and emotional cost of unresolved symptoms. While most participants had not found relief, those who did had been referred to a women’s urinary health specialist. Once a correct diagnosis was made, real solutions were implemented, ending the cycle.

Conclusions:

The management of older women with urinary tract infection and lower urinary tract symptoms is currently limited by delays in guideline concordant care. All of the information gathered will help us improve the care of these women.

Introduction

Lower urinary tract symptoms (LUTS) are broadly defined as a symptom related to the lower urinary tract that may originate from the bladder, urethra, and/or adjacent pelvic floor or pelvic organs.¹ LUTS are common, costly, and negatively impact quality of life.^2–4 There is significant overlap between the conditions that may cause LUTS, especially among postmenopausal women, which leads to significant diagnostic challenges for clinicians and frustration for patients.^5–7 This is particularly important when it comes to differentiation between urinary tract infections (UTI) and other confounding syndromes like asymptomatic bacteriuria (ASB), overactive bladder (OAB) and genito-urinary symptoms of menopause (GSM). Treatment of non-UTI conditions with antibiotics is impactful both on an individual and societal level. The evaluation and treatment of UTI costs several billion dollars globally per year, reaching approximately $2 billion per year in the United States.⁸ Antimicrobials are frequently overprescribed in those with advanced age and baseline urinary incontinence likely due to time constraints, patient expectations and provider concerns.^9–11

While qualitative explorations have created conceptual models that communicate the wide and varied symptoms of patients’ UTI experiences¹² and have preliminarily shown delays in guideline concordant care and appropriate referrals,^13,14 there is a paucity of data on how women interpret this potential overlap between these common conditions. As we seek to improve patient-provider communication surrounding both LUTS and ASB we must understand the impact that LUTS have on both quality of life and how to improve access to guideline concordant care. Given the paucity of studies focusing on the patient perspective of the potential overlap between LUTS, UTIs and ASB, we sought to complete focus groups with postmenopausal women to discuss their past experiences and source input on how to improve dissemination of patient education.

Methods

We recruited participants for our focus groups through our clinical office and also through a registry called Pitt+Me^® which is a community of over 300,000 patients, volunteers, and researchers working together as partners in research and clinical trials to advance healthcare. Pitt+Me^® is organized through the University of Pittsburgh Clinical and Translational Science Institute. Inclusion criteria for the focus groups were postmenopausal status and had previous experience with treatment for possible UTI. There were no exclusion criteria beyond lack of willingness to complete study procedures. A total of five focus group discussions were led by the Principal Investigator (PI; MB), a Urogynecology physician with training in Health Services Research (HSR) between February and October, 2023. The PI did not provide clinical care to study participants. All participants were provided a hand-out with information on ASB to guide the discussion and the focus groups were otherwise conducted in a semi-structured format. We developed a moderator guide designed to explore participants’ experiences with their urinary symptoms and also to investigate feedback on current terminology and recommendations on ASB along with factors that could improve education on this topic. Each focus group lasted for about 60 minutes and upon completion the audio-recording was transcribed verbatim. Three team members read de-identified transcripts of the focus groups, developed a thematic codebook following Conventional Content Analysis guidelines, and coded the data using NVivo software. Demographic variables were reported using descriptive statistics.

Due to the volume of information gathered via discussions with focus group participants this paper focuses on experiences with UTIs and other lower urinary tract symptoms. Feedback surrounding awareness and perspectives on ASB will be presented in a separate manuscript.

Patient and public involvement statement:

Results

Twenty postmenopausal women with previous treatment for at least one patient-reported UTI participated in five focus groups (5–7 women per group). The average age of participants was 69.1 (SD 10.8). Three participants (15.0%) identified as Black and the remaining participants identified as White. Many had post-secondary education, 12 with some college (60.0%) and 7 with graduate-level education (35.0%). Three overarching themes emerged from analysis of focus group discussions: (1) barriers to effective care and treatment for lower urinary tract symptoms (LUTS), (2) finding relief via referral and guideline concordant care, and (3) the physical and emotional cost of unresolved LUTS. The number of participants that brought up or commented on the reported themes are present in Tables 1 and 2.

Table 1.

Barriers to effective care and treatment for refractory LUTS

Theme	Representative Quotes
Incorrect diagnosis 7/20	“Most of the time, I get the urinary tract infections and I just call the doctor and tell him. ‘I need a prescription. I think I got a urinary tract infection.’ And he, almost immediately, is like, ‘Okay,’ and sends my prescription in.”	“See, I have the opposite problem. I don’t want antibiotics. I’ve had so many antibiotics in my lifetime to save my life, that I don’t wanna take anything more than I absolutely need.”
Ineffective or no treatment 5/20	“We have to wait the three days for the results. And when it is no value, they tell you, ‘Okay, drink lots of water. You don’t have an infection.’”	“I’ve had symptoms, the typical ones, the same ones when I do have a UTI. I go get tested, and it’s negative... And that really frustrates me because then you don’t wanna keep running in and getting tested. And you don’t wanna let it go because the doctor always says, ‘It’s very dangerous for you if you don’t treat it.’ And you don’t know what to do.”
Incorrect referral 6/20	“They put me in touch with the infectious disease ‘cause this is all we can do.’ I’m at the all we can do stage. And now, when the urologist saw it on the computer, he says, ‘You’re going to the infectious disease doctor. I really can’t treat you right now.’ I waited two and a half months for that appointment.”	“And then nobody wants to admit that they did something wrong...you call them back up, and said, ‘I was in terrific pain, what happened?’ ‘Well, we did what we thought we needed to do.’ You know, you just don’t get any answers. Then you’re more frustrated.”

Number of participants that mentioned notable theme are presented in the first column

Table 2.

Physical and emotional cost of unresolved LUTS

Theme	Representative Quotes
Confusion about changing symptoms 12/20	“My situation is—okay, at my age, I don’t get the burning anymore. Everybody will say that’s really glad, but I get that really bad pressure all the time.”	“I didn’t even know what a UTI was until menopause. And then it was like, oh, welcome to the world of UTIs.”
Disruption to daily life 7/20	“And I take the AZO for the pain when I can’t stand it anymore... I’m like, ‘Well , I gotta watch my grandkids tomorrow I have to get some sleep tonight.”	“I’m going home to take ‘em [antibiotics]. They help because the burning. I have people coming. It’s my Easter this Sunday. The frequency. I’m miserable. And then add the fatigue.”
Fear of escalation 6/20	“I think they can be very sneaky, this infection, because I once landed in the emergency room, and I had no symptoms... I had zero, no symptoms, until I had such an awful symptom, I knew this requires an ambulance to the hospital.”	“And then out of the blue, former President Bill Clinton’s in the hospital in intensive care with a UTI... and so right away, I went to the doctor. They said, ‘Oh, yeah. You have a UTI, and you’ve probably had it for two weeks.’ So I said, ‘I don’t want to end up like Bill Clinton.’ They said, ‘Well just keep coming in or you will.’”
Feeling dismissed 6/20	“And it’s not a complaint that I’m making. I’m having symptoms, and they’re real. They’re not manufactured.”	“Sometimes it’s hard when you call and they start questioning you, ‘Have you been drinking enough? Have you been doing this?’ I’m 74 years old. I know all of this. I’ve been through it so many times.”
Mistrust 7/20	“Then they come in in two weeks with a raging infection and needs antibiotics—you are never fixing that person again ‘cause they’re not gonna trust ya.”	“From a human perspective, I don’t think you can tell people...about their history. Because what they know is what they know....don’t try and tell me that I’m wrong... Just listen to what I’m saying and be empathetic... But if you antagonize me by telling me that my story is not true...”

Number of participants that mentioned notable theme are presented in the first column

Barriers to effective care and treatment for refractory LUTS

Primary care is the first source of care sought by older women dealing with lower urinary tract symptoms (LUTS). Participants reported numerous visits to Primary Care Physicians (PCPs) followed by an often-incorrect diagnosis of Urinary Tract Infection (UTI) resulting in repeated courses of antibiotics, which sometimes offered temporary relief but no solution. Barriers to effective care and treatment included receiving an incorrect diagnosis, being provided with ineffective or no treatment, and being referred to the wrong specialist. Additional illustrative quotes are provided in Table 1.

Incorrect diagnosis

Participants described receiving what felt like an “automatic” diagnosis of UTI and an antibiotic prescription, based on symptoms alone. Some described feeling transient relief after taking an antibiotic, particularly when in pain. Others expressed concerns about overprescribing and wanted to limit future exposure to unneeded antibiotics. Although most feared escalating infection, including the risk of sepsis if left untreated, they also described the worry over developing antibiotic resistance.

“I mean you run out of options particularly if you get resistant to things… I started to get really worried because [symptoms] were coming pretty quickly. And it turned out that I had symptoms but didn’t have an infection. So, I mean it just crosses in all these different ways…”

Participants reported that antibiotics often did lead to temporary symptom relief, whether an infection was confirmed by urinalysis or not, and expressed relief when practitioners would prescribe them solely based on symptoms. However, symptoms would inevitably return which was a source of frustration.

“I thought they know what they’re doing. And you’re trusting. And it’s unfortunate because the second or third day when I’m on an antibiotic, the symptoms do go away.”

Ineffective or no treatment

Participants who reported being treated with antibiotics also reported a return of symptoms following a period of relief. Those who did not receive antibiotics reported awaiting testing only to learn that they did not have a UTI or reported learning that their symptoms were insufficient to warrant testing. Both groups experienced no long-term relief.

“By the time all these appointments got set up…it was two weeks later… I did a repeat culture, and everything was normal. It’s almost like you wonder… Did the antibiotic do that? Did it just go away because…it took [so long] to get me on the antibiotic?”

Several participants also believed that they were prescribed antibiotics too freely and therefore the medication became ineffective. These participants described the arduous process of trying different classes of antibiotics over the years to provide the same symptom relief.

“I seem to become allergic to antibiotics after I’ve been on them for a while.”

Treatment failures described by focus group participants included delays in UTI testing/results or refusal to test, a return of symptoms following short-term relief on antibiotics, being sent home without any treatment or symptom relief strategies, and overprescribing resulting in resistance to certain classes of antibiotics.

Incorrect referral

Being diagnosed with UTI and prescribed antibiotics may have resolved symptoms temporarily, but participants felt like they were in a revolving-door situation when some form of their symptoms would ultimately return. Some eventually saw a specialist, but not a specialist who could help them. Two participants described being sent to Infectious disease specialists, one because she was at the “all we can do” stage. Three described being referred to urologists. One participant took the opportunity to consult urogynecology herself when her urologist of 30 years retired. Participants described much of the same frustration at what felt like a “runaround” when seeking care with infectious disease or urology that they experienced with primary care.

“And all of the people in my building were going to this urologist. And he just retired. And it’s like you go and have the culture and you take an antibiotic. This has been for 30 years.”

Finding relief via referral and guideline concordant care

While few women in the study had found symptom relief, many of those that did had experience with treatment via Urogynecologist.

Right specialist & diagnosis

Participants reported being referred to clinicians specializing in women’s urinary health. Pelvic spasms or hormonal imbalances were identified and once that diagnosis was made, alternative treatments like physical therapy (PT) or hormone therapy (HT) could begin.

After she expressed concern at taking more antibiotics, one participant’s PCP sent her to urogynecology when tests showed an absence of bacteria. She expressed gratitude at having answers and an effective course of treatment after many years of suffering. She and others who found relief felt they were finally given the correct diagnosis. In a participant’s own words, the specialist “saved my life” and she described the treatment as a “miracle.”

“I don’t think my PCP was aware of [urogynecology]. Then she might have gotten some information and became aware of it. So, when I was getting like, ‘What is this? I can’t take these antibiotics for the rest of my [life],’ she said… ‘You don’t have any bacteria in you, so let’s refer you.’ Finally!”

However, most participants in these focus groups had not found relief for their LUTS. Most described relying on antibiotics, home remedies, or supplements until those stopped providing relief. However, hearing from those who had found an end to their suffering gave hope that there could be an effective solution.

Physical and emotional cost of unresolved LUTS

Participants described the emotional and physical costs of repeated visits to physicians, referrals to urologists and infectious disease specialists that yielded no results, and ultimately an increasing mistrust of physicians from feeling they were blamed for an unresolvable problem. Additional quotes are provided in Table 2.

Confusion about changing symptoms

Participants reported increasing frequency and severity of LUTS as they aged. While some symptoms were classic and well-known as indicators of UTI, others were less obvious. Symptoms experienced were variable both between participants and individually over time. Most mentioned experiencing the lower urinary tract symptoms of burning or pain, urination frequency or urgency, and a feeling of pressure or fullness. Some reported an absence of classic LUTS, but instead experienced chills and/or fevers as indicators of infection. While some knew that urine color changes were a sure sign of infection for them, others had never experienced a difference in their urine as an indicator.

“Well, sometimes, yeah, there’s a little—a momentary burning. That’s very identifiable, but the—I remember the third time, it was just kind of like a pressure kind of a thing. I thought to myself, ‘This isn’t right. I know it’s not right.’ And that was the third one. The fourth one, I didn’t know about because I had no [symptoms], but I had a fever. I had chills and a fever.”

In some cases, participants experienced a change in how symptoms presented as they aged. This made care seeking decisions difficult because it was hard for them to know if they had an infection or not. There was also an expectation that UTIs were something women just had to deal with in their later years. One participant described watching her mother experience more frequent infections in her 80s, and that she simply expected the same for herself. Another participant had never experienced a UTI until menopause and then they came on rapidly and repeatedly. This tendency for symptoms to fluctuate, change, and accelerate with age made it onerous for participants to know when or if to seek treatment.

“One day, the pain, the frequency. I start with the chills. And then they held back. They said, ‘No. Let’s not. Let’s hold back.’ Okay. You go to bed and get up every hour on the hour because you’re in terrible pain, and…you have to take age into consideration. My body is breaking down at my age.”

Disruption to daily life

Participants described the emotional toll of experiencing these repeated and hard to distinguish symptoms. They described the anxiety and disruption to daily life caused by pain and other troubling symptoms, ranging from uncomfortable to severe, from fleeting to constant. Never knowing what to expect or how to treat symptoms interfered greatly with participants’ lives.

“You got a UTI. Let’s either get you on something, and some of that stuff makes you feel lousy, like you’re out of it for three or four days. It’s just you’re screaming in the bathroom… The pain was so severe.”

Some tended to seek help immediately, knowing things would only get worse, while others waited until symptoms were so bad they couldn’t stand it anymore. While participants were fearful of leaving symptoms untreated, they would often delay care or try home remedies rather than seeking care with a practitioner due to past runarounds. Many had tried to treat symptoms at home with things like AZO, D-mannose, Uqora, vitamins C and D, cranberry, garlic, baking soda, and hydration with varying results.

“And I’m kind of lax about waiting until I can’t walk to deal with it because I have the symptoms all the time, it seems like.”

Fear of escalation

Participants had genuine fears about untreated LUTS escalating into something life-threatening based on personal experience, accounts of others’ experiences, and/or from healthcare providers themselves. They described UTIs as “sneaky” and unpredictable. Most had either experienced sudden escalation of symptoms requiring hospitalization themselves or knew someone who ended up with sepsis because they weren’t given antibiotics. The cultural tendency to fear when antibiotics are withheld in the presence of troubling symptoms, particularly pain, is pervasive.

“Once I feel stuff coming on, I start freaking out because I get really sick sometimes, I mean, bad fevers… I live by myself and it’s scary. So, I run and try to get an antibiotic because I’m afraid that’s gonna happen again.”

Participants described the contradictory feelings of desperation for relief so they could carry on with their lives, but also hesitancy about seeking care based on varying and unpleasant past experiences. Add in the fear of developing a fatal condition if they didn’t seek care, and the emotional impact is appreciable.

“Or especially if the symptoms, let’s say, go away for a few days then come roaring back. I don’t wanna go in the hospital with sepsis.”

Trepidation about escalating symptoms is part of why participants often felt dismissed by practitioners when seeking care. Several described a knowing of their own bodies and when something was wrong or off, despite not always knowing exactly why. They felt this knowing was often disregarded by practitioners and worried what dire consequences of non-treatment could be. Despite what symptoms were present or testing results showed, participants knew they weren’t making things up or exaggerating them – their symptoms were real – and they felt unheard.

“Figuring out a way to talk to us that’s not belittling, that’s not condescending or patronizing or matronizing. But give me the power to make decisions after you’ve given me information. Especially at our age, I mean, we’ve been through it.”

Mistrust and Feeling Dismissed

Frustrating interactions with clinicians, combined with months and sometimes years of treatment with no relief, created a sense of medical mistrust. Participants described wanting to be empowered with information to make the best decisions for their own bodies. They urged practitioners to build trust by taking the time to listen and be empathetic, not rushing through a patient’s questions.

Focus group participants described the runaround and frustration they experienced managing LUTS. First, changing symptoms made it hard to know if or when to seek care. Once the decision was made, it was repeatedly met with an often-incorrect diagnosis of UTI and an antibiotic prescription. If infection wasn’t present, they were sent home without any treatment. Some were referred to urology or infectious disease but ran into the same cycle of temporary relief followed by a return of symptoms and no real answers.

Discussion

Our focus groups provided a rich source of information surrounding the frustrations experienced by older women dealing with both UTIs but also other LUTS and overlapping conditions more common in menopause like GSM. Our three main themes included: (1) barriers to effective care and treatment for lower urinary tract symptoms (LUTS), (2) finding relief via referral and guideline concordant care, and (3) the physical and emotional cost of unresolved LUTS. Focus group participants shared their experiences of repeated healthcare visits, misdiagnoses, and insufficient symptom relief. This cycle often leading to emotional distress, physical discomfort, and growing mistrust in the healthcare system.

A key finding from the discussions was the frequent misdiagnosis of LUTS as UTIs, with many women reporting that their symptoms were automatically attributed to a UTI, followed by antibiotic treatment. This aligns with previous research showing that UTIs are commonly overdiagnoses, especially in older populations where LUTS are often multifactorial and can be related to a range of non-infectious conditions, including overactive bladder (OAB) and genitourinary symptoms of menopause (GSM).^6,9 Participants in our study expressed frustration with receiving temporary symptom relief from antibiotics, only for symptoms to inevitably return. This phenomenon may reflect the well-documented challenge of differentiating between true infections and other urinary symptoms. ¹⁵ Another barrier identified in our study was the failure to provide timely or effective treatments beyond antibiotics. Participants described receiving no treatment, ineffective treatments, or being referred to specialists who did not offer relief. This points to a significant gap in the healthcare system, where patients often cycle through multiple providers without receiving a clear diagnosis or appropriate care. This is likely multifactorial as providers note poor useability of clinical guidance documents and substantial confusion about the role of preventative measures and additional diagnostic testing. Furthermore, difficulties in patient access to care providers lead to expectations for presumptive treatment ¹⁶ Our data further suggest that urogynecologists, who specialize in pelvic floor disorders, may be able to better partner with first-line providers like PCPs to improve the care of postmenopausal women.

The emotional and physical costs of unresolved LUTS were also evident in our findings. Women described the anxiety, disruption, and fear associated with ongoing urinary symptoms. The unpredictability of symptoms, which varied in intensity and presentation, compounded the difficulty in deciding when to seek care. These sentiments are well supported in current literature.¹⁷ Participants expressed the desire for more transparent, empathetic communication, as well as greater involvement in decisions regarding their treatment plans. The frustrations voiced by participants reflect a broader issue of patient-centered care, where the lack of effective communication and shared decision-making can exacerbate feelings of being disregarded.¹³

Of note, although frequency of themes was presented in our results, it is important to emphasize that because of the conversational nature of focus groups, the counts do not capture the number of people who may have agreed with a statement via a head nod, or who had a similar experience but chose not to bring it up because it had already been mentioned. Our data does need to be interpreted with action paid to the population that made-up our focus groups. Overall, the majority of the focus group participants were highly educated and therefore may have higher health care literacy than other populations. We did have racial diversity that was somewhat lower than what is representative of our urban population in Southwestern Pennsylvania and therefore we cannot extrapolate our findings to all racial groups or more rural locations. Future work should ensure that the voice of all postmenopausal women who receive care across the nation are understood as we continue education and care-provision efforts.

Conclusion

In conclusion, our findings underscore the importance of improving the diagnostic process for LUTS in postmenopausal women, particularly in differentiating between UTIs and other overlapping conditions. Addressing these challenges requires enhancing provider awareness, promoting guideline-concordant care, and improving patient education to empower women to better navigate the healthcare system. Efforts to improve communication, establish trust, and ensure timely referrals to the right specialists are essential in reducing the emotional and physical burden of LUTS.