This study was conducted between July 2020 and December 2020 during the COVID pandemic in the United Kingdom (UK). While some women in the SM group were based in England and the United States (US), most participants were based in Scotland, where there are no charges to be paid for medications prescribed by their GP.
A flowchart of recruitment into the qualitative study is demonstrated in Figure 1. 23 participants were recruited and interviewed. Women’s interviews were anonymised, and their experience was reported using the abbreviation of the group they belonged to along with the participant number.
All participants opted for telephone interviews which lasted on average for 15 minutes (Range: 3-46 minutes). The themes identified during the analysis (Table 1) are detailed below with relevant quotes in Supplementary Material 2-5.
1. Knowledge of CAMs and Nature of Self-management of UTI
a. Range of Products Tried
CAM use and/or changes in behaviour to self-manage UTIs were reported by all participants. Women in all groups had tried a range of oral agents, with a few trying local applied products like yoghurt and self-made preparations with witch hazel and castor oil. Cranberry-based oral products were the most reported by participants across all groups. Women in SM had tried more types of CAMs when compared to the others.
Women in the first three groups mainly mentioned increasing their fluid intake to try and “flush out” (the UTI). Women in SM mentioned changes in behaviour such as urinating and/or washing after sex, cutting out sparkling water and fizzy drinks, not using thong underwear, altering their diet, trying different CAMs and including supplements in their routine (Table 2).
b. Source of CAMs - information and products
Sources seemed to be various internet sites, journals, medical specialists, support groups, friends, family, and colleagues with experience in managing recurrent UTIs. Women in SM described themselves as having extensively researched CAMs.
All women in SM and some in the other groups mentioned seeking advice from HCPs, in addition to self-managing with CAMs. Women in all groups professed to being grateful for any input from HCPs, however in the GG, UG and GP groups most stated they had not discussed CAMs with HCPs. When discussion with HCPs took place, cranberry supplements were commonly mentioned. Women in SM described themselves as not having received enough information from HCPs. All women in SM group reported speaking to a specialist such as a Urologist, a Gynaecologist, nurse specialist, a Herbologist, CHM (Chinese Herbal Medicine) Practitioner or an acupuncturist.
Most women in the first three groups commented that the HCPs advice met their expectations: the lack of discussion about CAMs was unsurprising as they expected to hear only about “medicine”. Some, however, stated that HCPs only prescribed antibiotics and recommended drinking plenty of water, which did not meet their needs. When women did mention taking CAMs to their GPs, they stated that they were either not given any additional advice or were told that while worth trying, it did not always work for everyone. This contrasts with all women in SM who were dissatisfied with their GPs and stated this reason for seeking advice regarding management of UTIs elsewhere.
Women in all groups reported not having seen their GP in person for a UTI– either handing in a urine sample or having a telephone consultation before being prescribed antibiotics - a broad-spectrum antibiotic which was then changed to a targeted one. While this was easy for some, a few were unable to speak with their GP and reported struggling with symptoms.
Women bought cranberry juice from the supermarket, food supplements at health food stores, sachets containing cranberry and Vitamin C at the chemist. They also bought different herbal drinks and food from the supermarket, antimicrobials from nutritional therapists, integrated doctors who prescribed CHMs, specific herbs from Herbologists and probiotics online imported from the US.
c. Sources for Reassurance
All women in SM and some in the other groups found online UTI support groups great sources of support because of free sharing and comparison of information. Some women mentioned being grateful for referral to a Specialist when requested. Women also sourced CAMs from overseas and alternative health practitioners.
Women across all groups stated their belief that these products were natural, not harmful and were happy to try them because of their presumed safety. Women were also happy with their pharmacists who were able to give them advice on CAMs and prescribe antibiotics if required.
2. Justifications for CAM use
a. Ideas about Causes of Recurrent UTIs
Women stated various reasons for developing UTIs. In all four groups, some mentioned genetics with mothers and/or daughters having them, previous untreated childhood UTIs, being prone to developing UTIs and bacteria being “embedded” in their body for years. Women in SM spoke about recurrences being due to bacteria present in their gut, vagina and/or bladder, which were difficult to eradicate with oral antibiotics which they felt “only killed free floating bacteria”.
b. Concerns about Antibiotics
Women across all groups wished that CAMs had been discussed with them sooner, reporting adverse effects of antibiotics:– killing good bacteria, suppressing their immune system - being susceptible to frequent colds and vaginal thrush, with fears about antibiotic resistance from overuse. Some women in SM who used long-term high dose antibiotics to treat UTIs were concerned about side effects, feared having co-existent H pylori and gut problems and had concerns about using Gentamycin bladder instillations and the need to self-catheterise. Women were also concerned about being on low dose long term antibiotics because they felt bacteria were never killed and would become resistant to antibiotics, being eventually fatal. They wanted targeted antibiotics to prevent this. Additionally, women were concerned about not receiving “a complete prescription” of antibiotics:– receiving a three-day course from a pharmacist was felt by some to be inadequate, inducing resistance and the need to return for more.
c. Rationale for use of CAMs
‘Desperation’ was the main reason reported across all groups, with reliance on word of mouth and hope that CAMs would work. Several women in the first three groups mentioned not having any problems with cranberry supplements, because they felt that it was worth a try, harmless, available over the counter, tasty, preferring this as they believed they were traditional, natural products and “home remedies” with a holistic approach to health. This seemed to be the case even when they felt that it did not address the cause of their UTIs, stating comfort and it being a matter of “trial and error”.
All women in SM and many in the other groups mentioned the major reason for trying CAMs was their need to avoid or reduce use of antibiotics. They also wished to avoid taking too many medications, damaging their organs, troubling their doctor, being unable to get an appointment with their doctor, convenience and ability to self-manage themselves quickly and easily when required. Other perceived health benefits included: improving their digestion and having a better quality of life overall, preference for using agents like Vitamin C to acidify urine, Lactobacilli to help vaginal dysbiosis, water to flush bacteria away and bicarbonate of soda to neutralise urine to treat a presumed UTI.
d. Perceived Effectiveness for UTI Prevention
In the first three groups, most women believed that keeping themselves hydrated with water and cranberry supplements prevented recurrences. Some felt they did not take these agents as much or regularly enough to notice a benefit.
All in SM and some in the first three groups believed that cranberry supplements did not work for them. Some in SM did not think that D Mannose helped. All of them mentioned various other CAMs and dietary modifications which they believed helped. They stated the need to find the right combination to help one’s own body and that they had tried different regimens before finding their current working plan. Women mentioned using agents like Methenamine Hippurate (MH): in combination with probiotics initially aiming to wean MH completely in future or using MH instead of antibiotics prophylactically before sex. There were concerns about using vaccines against UTIs, specifically about them having more bacteria in their body and the mechanism of action when they are already infected.
e. Perceived Effectiveness for Self-management of Presumed UTIs
In the first three groups, some felt cranberry products helped resolve their symptoms, particularly when on holiday or when they couldn’t reach their GP; others were unsure, unable to remember or did not know. When perceived that cranberry supplements did work for them, they reported taking it earlier or for longer than usual. They sometimes regretted awaiting spontaneous resolution and not starting this sooner. Some women mentioned cranberry products in combination with urinary alkalinising agents being more effective than cranberry alone, drinking lots of fluid and/or bicarbonate of soda helping symptoms but found application of yoghurt over the vulva unhelpful. While cranberry seemed to help initially for some, there was also a perceived need to treat with antibiotics stated for some stating that only antibiotics helped resolve their symptoms at the end.
Women wondered if symptoms subsided with time anyway, if fluid helped flush the infection out of their system or if there was a psychological element to feeling cranberry supplements helped. Women accepted that stronger remedies were only available by prescription and that they didn’t expect over-the-counter products to be as effective, being a “gentler solution”. While some were hopeful that this would treat their symptoms for good, this was not always the case and others resorted to antibiotics straight away without trying CAMs.
In SM, women mentioned trying cranberry as well as numerous CAMs unsuccessfully prior to their current regime believing that they had “an embedded infection”. The use of antibiotics and CAMs concurrently initially, gradually reducing the dose of antibiotics and later staying on CAMs alone to keep symptoms at bay, seemed to help avoid using longer courses of antibiotics and being symptom-free for longer.
f. Future Plans
A majority in the first three groups tried CAMs, even with symptoms of a UTI, and even if this had been unsuccessful in the past, stating an intention of using them in the future. Some women stated an intention of getting a prescription for antibiotics from their GP straightaway in the future.
In SM, the women were sure they would continue using CAMs, advocating their use routinely, minimising the use of antibiotics to when absolutely required, if at all.
3. Challenges with use of CAMS
a. Issues with use of CAMs- dosage and conflicting advice
Across all four groups, women who tried cranberry juice were unsure about dosage: reported using information obtained online, guesswork, from previous work experience in hospices and nursing homes or through word of mouth. Dosage varied widely - drinking as much as possible, a small portion regularly with or without dilution and some believing that this varied between individuals. The majority expected better information about dosage of CAMs to be available.
Some women in the first 3 groups and most in SM mentioned receiving conflicting information about dosages of CAMs, researching this and drawing their own conclusions. Conflicting advice about MH from specialists in UTIs was reported. Some specialists recommended it, some stated it might not work, that it could cause kidney damage. Some women stated that it was unusual for it to be prescribed, that their GP would not prescribe it, and that it was for older women only. Women reported worrying about reasons why it was not usually prescribed, what side effects they had and their severity, especially with life-long use. There was also a concern that it would only work if the UTI was caused by specific bacteria such as Escherichia coli. Some also stated hearing that MH greatly helped other women - which reassured them and that when they tried it, it had worked well, increasing their confidence in its use.
b. Perceived Adverse Effects
Some women in all groups expressed concern about D-Mannose or cranberry juice increasing the level of sugar in their body, especially with concurrent medical conditions like diabetes mellitus, Polycystic Ovarian Syndrome (PCOS), being on anticoagulants like warfarin and being overweight. Most in the first three groups reported no or few concerns taking CAMs, some taking them routinely and enjoying the taste. However, some women did not like the taste of cranberry juice or bicarbonate of soda, finding cranberry juice nauseating and causing a struggle with symptoms of bladder overactivity. While most preferred to drink a lot of water, some women also reported finding this challenging.
The SM women reported a number of perceived adverse effects of CAMs including: constipation from Kefir yogurt, digestive issues from bicarbonate of soda or other alkalinizing agents, cranberry juice causing a sensitive stomach and worsening of haematuria as well as reluctance to try MH due to formaldehyde “burning their bladder”. There were concerns about inability to continue longer courses of natural antimicrobial agents due to potential side effects, even though it worked for them and about taking too many chemicals when trialling different types and combinations of CAMs, with or without antibiotics. There were worries about using CAMs based on information from non-medical people with UTIs, forums and bloggers online, concerns about using CAMs without long-term knowledge about the impact on their body, that they might stop working for them over time, that they might work differently for different people and their impact on future fertility. Some women stated no other choice but to turn to alternative medications despite these perceived adverse effects because traditional medications had failed them.
4. Expectations for future UTI management
a. Better testing
Women in SM were upset about the lack of information about and testing for embedded UTIs being freely available in the UK. They stated that reliable testing for UTIs overall needed a major overhaul, as unreliable urine dipsticks were still routinely used. Women were concerned that they were not being tested to check for urinary retention, even by specialists, and were worried about further investigations like cystoscopies for UTIs because of further risks of UTIs and/or pyelonephritis.
b. HCPs being Educated
Some women in all groups felt doctors did not discuss all options available for managing UTIs apart from antibiotics as their knowledge was inadequate.
Women in SM believed that doctors should help when requested about CAMs, felt that they were not listened to, did not get answers despite asking, were not pointed in the direction of a specialist in UTIs and were inadequately counselled on prevention techniques following investigations like a cystoscopy. Women were also angry that despite investigations, antibiotics were always prescribed, and some CAMs were never mentioned, meaning that they had to seek information and support from alternative sources.
Women expressed their frustration with HCPs when they had negative urine tests despite being symptomatic, sometimes being accused of having mental health problems. They expressed anger at not being told about the role of vaginal atrophy on UTI occurrence; when their ovaries were removed surgically, not being offered an alternative when one type of vaginal oestrogen did not work; or being expected to accept being in pain and needing to be stubborn to find a solution.
c. Further Research
Women in SM were concerned about the lack of adequate funding for research into UTIs, expressing a keenness to help due to their experiences, and gratitude for ongoing research. They were also concerned about lack of information about natural remedies, stating that if there was more knowledge about them, people would make better-informed decisions.
d. Testing for embedded UTIs
Women in SM spoke about testing for embedded UTIs using broth tests and MicroGenDX tests which they described as being popular in the US. They believed that these helped to identify the bacteria causing their UTI, meaning they could be prescribed specific antibiotics and choose probiotics that suited them, reporting success in other women in their support groups.
e. Bring phage therapy to the UK
Women in SM spoke about targeted phage therapy being used in Europe against specific bacteria with no side effects and that antibiotics were adopted only for cost effectiveness and quick action. Naming a clinic in Russia which provided this, one woman mentioned that she would been there if it hadn’t been for the COVID pandemic, was trying to get this shipped with concerns about practicality of learning to instil it into her bladder. Women seemed motivated by other success stories with ongoing research in other countries stating that the UK “needed phage therapy” and more research in this, an uncertainty about efficacy, variance of effectiveness of oral phages, the need for custom made phages, their potential short-term nature of relief as well as prohibitive costs.