On her 49th birthday, Lisa Sawers woke up to a burning, stinging sensation – ‘like being stung by a swarm of wasps’, she says.

It radiated from her bladder, throughout her pelvis and down her legs. There was also a familiar, unrelenting pressure to urinate.

Since her 20s, Lisa had experienced urinary tract infections (UTIs), which can affect the kidneys, ureters (the tubes that lead to the bladder), bladder or urethra (which carries urine out of the body).

Caused by bacteria (usually E. coli), they led to intense burning pain and blood in her urine.

But usually there would be periods of respite: in her 20s, this was for around two months; in her 30s, the UTIs disappeared almost entirely. Then in her 40s they returned, affecting her every month.

But in the nearly six years since her 49th birthday, Lisa’s symptoms have not gone away, fluctuating from bad to utterly excruciating.

‘I get through the days, but it has changed the entire landscape of my life,’ says Lisa, 54, a yoga instructor who lives in Hampshire with husband Doug, 64, a company director, and daughters, Meghan, 21, and Lauren, 19.

‘I constantly walk around with ice-packs pressed into my legs and pelvis to reduce the inflammation; at other times I have purple marks on my legs from holding hot-water bottles against them to help with the pain,’ she adds.

Since her 20s, Lisa Sawers had experienced urinary tract infections (UTIs), which can affect the kidneys, ureters, bladder or urethra

‘It keeps me awake most of the night, three or five times a week. Painkillers don’t touch the sides.’

Lisa is one of 1.7 million women in the UK who has a chronic UTI: a persistent and embedded infection that doesn’t clear with a short course of antibiotics as ‘normal’ UTIs do.

They often do not show up on standard urine tests for infection either, causing significant problems and delays when it comes to diagnosis and effective treatment.

Symptoms include a painful, burning sensation when peeing, abdominal pain, intense urgency to pee, cloudy or pink (because of the presence of blood) urine – and, if the kidneys are affected, fever, chills, nausea, fatigue and upper abdomen or back pain.

As well as being a woman, other risk factors include catheter use; menopause (hormonal changes affect the community of protective microbes inside the vagina); kidney stones (which block the urinary tract); a weak immune system; and sexual intercourse.

The problem can have a profound psychological impact.

One in ten of those with chronic UTIs thinks about suicide or has made an attempt, according to a shocking report published by Chronic UTI Australia, a patient advocacy group, in 2021.

In May last year, Allison Gardner, MP for Stoke-on-Trent South gave an emotional account of how her experience of having an ‘excruciating’ chronic UTI left her so desperate she considered having her bladder removed.

Yet despite chronic UTIs being recognised by the NHS, there isn’t yet an official medical definition for the condition – or any treatment guidelines.

It means patients, like Lisa, are left in the dark, battling alone for solutions to a poorly understood and utterly debilitating problem.

But now there is a growing momentum for change.

Last week, the All-Party Parliamentary Group (APPG) on UTIs met for the second time. It is pushing for a complete overhaul of how UTIs are diagnosed and treated in the UK, as well as the introduction of specialist NHS clinics, setting out clearer diagnostics for chronic and recurrent cases, and a formal, standardised medical definition for chronic UTIs – which, amazingly, does not exist.

The group, led by Ms Gardner and fellow MP Luke Taylor, is also investigating how often pharmacies are refusing to prescribe antibiotics for UTIs and referring patients back to GPs – with a view to widening eligibility criteria so more people can benefit from timely treatment.

Over the past two years or so she’s been so ground down by the constant pain that she has ‘became a shadow of myself’

Mr Taylor said the group is ‘an important part of securing real change’, and any change it does bring could make a difference to many people’s lives.

UTIs can affect anyone – not just women but also men and children. It is, however, a woman’s anatomy – with a much shorter urethra, 3cm compared to a man’s 20cm – which makes it easier for infection-causing bacteria to colonise the bladder, ureters or kidneys.

Around 60 per cent of women have a UTI at least once in their lifetime, and 20 per cent experience recurrent UTIs – two or more infections in six months – which account for 50 per cent of all antibiotic prescriptions, according to The Urology Foundation.

Chronic UTIs, however, never completely resolve.

‘UTIs become chronic when bacteria in the urine embed themselves within the lining of the bladder wall and/or other parts of the urinary tract, where antibiotics and immune cells cannot easily reach them,’ explains Dr Catriona Anderson, a GP and founder of Focus Medical Clinic, a UTI testing and treatment service.

‘This causes inflammation and persistent, hidden infection: hidden because there’s no evidence of infection on urine tests as they are designed to detect acute, free-floating infections – not those embedded in the bladder wall.’

And although they are often treated as a minor problem, UTIs can have serious consequences. A study in the journal The Lancet Primary Care in February found recurrent UTIs significantly increased the risk of bladder cancer, especially in older people.

They are also one of the most common causes of sepsis in women, a life-threatening reaction by the immune system to an infection. Warning signs include not peeing all day and fever.

Part of the issue is due to urine tests coming back negative for bacteria associated with UTIs, even though such tests are notoriously unreliable for diagnosing chronic, embedded infections. However, non-specialists may not be aware of this – something it is hoped any new guidelines will correct.

The standard mid-stream urine culture tests are known to miss 90 per cent of chronic infections, and dipstick tests 40 per cent of them, according to studies in 2018 in the Journal of Clinical Microbiology and International Urogynecology Journal, respectively.

In fact, many experts agree the thresholds (the number of a bacteria present for a test to be deemed ‘positive’) currently used by GPs to diagnose UTIs in general are based on outdated and inadequate research.

‘Both tests are based on one small study, published in the 1950s, that looked at 88 pregnant women with kidney infections – and in no way are representative of a typical UTI sufferer,’ says Dr Anderson.

‘The threshold for pathogens is too high, they miss many clinically significant species.

‘Even drinking a lot of water can affect their accuracy; and they are unable to detect bacteria that are dormant and embedded in the bladder wall, as happens in chronic UTIs, meaning not enough is circulating in the urine to be picked up by these tests.’

Lisa’s experience highlights the desperate need for change.

Over the past two years or so she’s been so ground down by the constant pain that she has ‘became a shadow of myself’.

‘I couldn’t swim, go out for meals as I couldn’t sit for long enough without fidgeting, drink alcohol [which caused flare-ups] or take long flights,’ she adds.

‘Often, I wouldn’t leave the house. I’d cry on family holidays because I couldn’t disguise the pain and was worried I wasn’t showing my young girls strength.

‘I’ve said to my husband: “I can’t suffer like this. If I was a dog, you’d put me down.”

She says: ‘I cannot allow this to rule me any more. I have to train myself to know joy and pain can co-exist’

‘But then I think: “I’m a mother and a wife – and I deserve to live a life I love.” ’

Lisa saw more than 20 specialists – including urologists, gynaecologists, menopause experts, acupuncturists and other naturopathic doctors – seeking help, which has cost her tens of thousands of pounds. To no avail.

‘Because tests were consistently negative, the urologists I saw were so dismissive,’ she says.

‘I felt like it was an infection, but no one was confirming it. I felt belittled and ignored.’

Lisa has also tried everything from paracetamol and ibuprofen to prescriptions for codeine, nerve-numbing antidepressants and anti-epilepsy drugs.

After multiple dipstick tests ordered by her GP showed she didn’t have an infection, Lisa sought help privately.

Yet the numerous specialists she saw were also at a loss.

As urine tests were negative for common UTI bacteria, it was assumed she might have interstitial cystitis or bladder pain syndrome, a chronic bladder condition not caused by a bacterial infection. ‘I was given cystoscopies [where a camera is inserted into the bladder and urethra], bladder hydrodistentions [when it is temporarily filled with fluid to help see abnormalities]; urethral dilations and bladder instillations [when medication is delivered into the bladder],’ says Lisa.

‘I’ve been put on antihistamines for suspected interstitial cystitis – which I didn’t have – medication to reduce stomach acid and antidepressants [to reduce nerve-related pain]. None of it worked.

‘Most of the procedures made my symptoms worse, because I already had an irritated urethra and burning bladder – and they were putting tubes and scopes into them. After some cystoscopies I couldn’t walk out of the hospital, I was in such agony.’

At one point, a doctor suggested it was genitourinary syndrome of menopause, caused by falling levels of oestrogen triggering changes to the urinary tract and symptoms similar to UTIs. Lisa was started on HRT. It also didn’t help.

In spring 2023, on advice from a friend, she went to Artemis Cystitis, a specialist UTI clinic in London.

Lisa underwent a testing technique known as fresh, unspun urine microscopy, where urine is put under a microscope. This revealed Lisa’s white blood cell and epithelial cell counts were sky-high – key markers of infection, unrelated to specific bacteria strains.

The clinic diagnosed Lisa with a chronic embedded UTI and said the treatment was antibiotics that she would need to take for at least 12 months.

She says: ‘I thought: “Thank God. I’ve got a plan now.” I was so relieved to have a diagnosis and to be believed.’

But any optimism has been sorely tested. Since then she’s been on a conveyor belt of different antibiotics as doctors sought to reduce her symptoms without intolerable side-effects (side-effects can be a particular problem when higher doses are needed for longer).

‘Nitrofurantoin [a first-line antibiotic] made me cough all the time and I had fluid on my lungs,’ recalls Lisa. ‘On others I got severe palpitations, so much so I had to see a cardiologist and we realised it was the antibiotics.

‘I ended up on a combination of cephalexin and amoxicillin – but most days the UTI symptoms felt just as bad.’

Cruelly, as she’s now learned, Lisa is one of the 30 per cent of women with chronic UTIs who don’t respond to antibiotics.

In any case, relying on antibiotics alone to treat UTIs – whether chronic or recurrent – is not ideal, as resistance can develop and they impact the gut microbiome, wiping out protective bacteria.

‘We should be looking at non-antibiotic treatments,’ says Steve Foley, a consultant urological surgeon at The Reading Urology Partnership, ‘because this is not just about bacteria, it is about how your bladder deals with bacteria. If used, antibiotics should be put straight into the bladder – i.e. used locally not systemically.

‘But treatment of UTIs is poorly done around the country – most doctors don’t have the time or interest in it.’

Others, including Dr Anderson, advocate tailoring antibiotic treatment for recurrent and chronic UTIs, working out which drug will work best by finding out what specific bacteria is causing the infection.

But this requires urine being sent to a lab for a ‘full culture’ – placing a sample in a petri dish, where the bacteria are allowed to multiply enough so that the precise type can be identified.

However, results can take up to five days, and usually GPs rely on cheaper, quicker dipstick tests, which take two minutes.

‘If you don’t find which bugs you are dealing with and which antibiotics are going to nobble these bugs the best, you are just shooting blindly,’ says Dr Anderson.

‘Once you know, you have to go in good and hard for just long enough. It’s like the bacteria are in a fort and we need to bomb them out of it. Once they are out and we have them under control, then we can pin them down with one sniper – non-antibiotics – that we slide in whilst removing the daily antibiotic.’

Now, after three years of constant antibiotics, Lisa still struggles with UTIs – but also with diarrhoea and vomiting when travelling or if she eats anything out of the ordinary.

Four months ago, utterly fed up, she stopped all the antibiotics.

‘My gut is shot to pieces,’ she says. ‘The drugs are not working. I also have problems with what I can eat due to the chronic UTI. I’ve cut out citrus, tomatoes, alcohol and chocolate. But it’s hard to know what sets off flare-ups because you live with daily symptoms.’

As Mr Foley explains, once you’ve had a UTI for long enough your bladder may become chronically inflamed.

‘Even if your bacterial load is down, it can stay angry,’ he says. ‘I describe it as like having eczema in the bladder – stress or spicy and acidic food and drink can cause pain and symptoms.’

Today, Lisa is relying on breath work, yoga and pelvic-floor exercises to ease stress and pain alongside taking non-antibiotic treatments such as d-mannose, Hiprex and vitamin D, to strengthen her immunity (see box above), but it’s a constant struggle.

She says: ‘I cannot allow this to rule me any more. I have to train myself to know joy and pain can co-exist.’

However Dr Anderson believes there is hope ahead.

‘Once we’ve got the medical definition for chronic UTIs published, change will be forced. Then it will be time for the British medical establishment to recognise they need better diagnostics and treatment pathways.’

Mr Foley adds: ‘There is a massive lack of education on it. It’s the biggest topic GPs face, but all they do is give a short course of antibiotics. They are pressurised for time, but we are not thinking about the patient.’

The treatments that are worth trying

As consultant urological surgeon Steve Foley explains, treating recurrent and chronic UTIs is not just about bacteria, ‘it is about how your bladder deals with bacteria’.

He recommends trying multiple non-antibiotic treatments such as methenamine hippurate, brand name Hiprex (an antiseptic tablet that breaks down into formaldehyde to help kill urinary tract bacteria). A study published in The BMJ in 2022 found the drug is as effective as long-term antibiotics at preventing UTIs. It is available on the NHS.

Other options include d-mannose (a sugar supplement said to help prevent E. coli from sticking to the bladder wall); vaginal oestrogen cream (supporting growth of the probiotic Lactobacilli, so lowering vaginal pH and making it less hospitable to harmful bacteria); lifestyle measures such as avoiding sex, alcohol, swimming, hot tubs and baths; wiping front-to-back after using the loo; eating a low-carb diet (which helps starve inflammatory bacteria of the glucose they love); and taking probiotics to build up the immune system.

Another promising avenue, adds Mr Foley, is oral spray vaccines such as Uromune as a preventative measure – there’s emerging research that these can help prevent symptoms becoming chronic.

‘But it isn’t approved on the NHS due to cost,’ he says. ‘It’s approved in other countries, including Spain and Mexico.’