Dismissed, ignored and ridiculed: How doctors are letting women down when it comes to UTIs

Katy, 26, from Merseyside began to see her GP regularly after contracting repeated painful urinary tract infections (UTIs) – which cause pain, a constant desperate urge to urinate, a stinging sensation when peeing and sometimes blood in the urine – every time she had sex. “I asked my doctor many times as I was worried; it was obviously having a clear impact on my life. I was brushed off every single time,” she says. “One doctor literally laughed at me when I asked if I might be able to have my kidneys checked at all.”

Katy is far from alone. She is one of many women who began sharing their stories of the misogyny they had faced when seeing their doctor, following the publication of a report revealing that women are 32 per cent more likely to die after an operation if their surgeon is male.

Thousands described being ignored, belittled and even laughed at when visiting a GP. As the stories mounted up, a common thread emerged: hundreds of women in Britain were suffering from regular, repeated painful UTIs and yet NHS doctors were fobbing them off.

According to the NHS, UTIs (which include cystitis, urethritis and kidney infections) are caused by bacteria entering the urinary tract through the urethra. As women have a shorter urethra than men, bacteria are more easily able to reach the bladder or kidneys and lead to an infection. Penetrative sex, pregnancy and a lack of fluids can all lead to such infections.

As UTIs are incredibly common among women (10 in 25 women will get at least one during their lifetime, a rate 30 times higher than in men), it is an incredibly common reason for women to visit their GP. Even more so if, like one in 10 of those who contract a UTI, they become a constant recurrence. And when women seek support, they find it is severely lacking.

New research from Garmin, seen by the Independent, found that 40 per cent of young women say they have been accused of over-exaggerating symptoms or being “over dramatic” about their wellbeing when seeing a doctor. An even higher figure (45 per cent) say they’ve had their symptoms written off as simply “part of being a woman”. The research backs up a study carried our last year by Engage Britain, which confirmed that only six in 10 people say they feel listened to and understood by their doctors – leaving four in 10 without the support they expect. One in five (21 per cent) said they had been forced to seek private treatment because they had not found the help they needed within the NHS.

Sarah, 30, from East Sussex, started to experience regular UTIs from the age of 14, and the condition only became more frequent and more severe after she became sexually active. For 11 years she was in a cycle of constantly experiencing symptoms and calling the GP for antibiotics to resolve the problem – which would immediately recur.

“In my mid 20s, my cystitis was happening more regularly than my monthly period. It was getting so bad that I would wake up in the night, feel the desperation to urinate, grab my laptop, a litre of water and a pot to pee in to provide as a sample (I kept them in a drawer in my room) and sit on the loo watching Netflix for hours at a time whilst I attempted to flush it through before my GP surgery opened so I could call for antibiotics,” she says. “I started to become fearful of sex and very anxious about whether I could risk getting an infection dependent on what I had coming up in my work and social diary.”

At this time a male GP referred her to a urologist for further investigation, so Sarah prepared herself for the appointment. She wrote down all her triggers, including when and what kind of sex she was having, how quickly cystitis occurred afterwards and what she was doing to manage it herself, including washing and urinating before and after sex.

“As I explained this all matter of factly to my male urologist, with a female chaperone present, he stopped me in my tracks and said: ‘I’m sorry, but I feel very uncomfortable talking to women younger than my daughter about sex’. I made eye contact with the female chaperone in disbelief who didn’t even flinch. I tried to explain that that’s what triggers it and I thought it might be useful information.”

The urologist told her she’d need a scan of her bladder and kidneys, but Sarah left the appointment feeling ashamed and angry. “How dare he belittle me out of his own embarrassment? I was a 26-year-old woman in a long-term relationship but, regardless of that, I was talking to a doctor in confidence. No matter what my sexual preferences, age or marital status, I didn’t warrant his dismissal. I was bleeding when I urinated and in agony nearly twice a month. I needed his help, not judgement.”

Sarah complained to the NHS Trust, but the apology letter she received in response was “patronising and dismissive”, she says. Sarah sought a second opinion but was met with a male urology nurse who flirted with her at the appointment and made her feel deeply uncomfortable. “I felt utterly helpless, embarrassed and scared and was close to tears for the whole appointment,” she says.

Countless women report similar experiences, yet the danger of ignoring women’s symptoms is clear: if they are left treated, UTIs can become life threatening.

Two years ago, Lousie, 42 from Brighton, spent two months going back and forth to a series of GPs due to constant bladder discomfort. “One female GP thought it was a prolapse; it wasn’t. The male doctor said I could be pregnant and insisted I did a test when I’d already done one. They also took the supposed gold standard urine dip test and it was negative. I felt fobbed off. They clearly didn’t think it was anything serious. I felt like they saw it as ‘women’s pain’ – something to be dismissed and minimised.”

A month later, Louise began to shake, sweat, and vomit. “Instinctively I knew something was really wrong and was vomiting in the surgery, begging for help. At this point I could hardly walk,” she says. Because she had recently travelled to Africa, the doctors started investigating for malaria. She was rushed to hospital, then discharged, then had to return again to be taken seriously, all within 24 hours.

“My temperature was 104 degrees. I was taken to the high dependency unit and put on antibiotics and fluids. Still, they didn’t know what it was. I had to wait a further three days in hospital for blood cultures to show I had an E Coli infection due to a UTI. This has festered over the months and I had developed urosepsis and was lucky not to have gone into septic shock.”

A month later, the situation recurred, with another UTI that was not revealed by common test results. Throughout the experience, the symptoms that Louise was clearly reporting had been ignored because tests didn’t reflect her experience of her own body. Her pain was dismissed.

Dr Nighat Arif, a GP and specialist in women’s health, says the attitudes women face in GP surgeries when reporting UTIs is partly down to the fact that doctors working in general practice rarely have any detailed knowledge of women’s health or the latest evidence around UTIs, with training in female issues such as vaginal atrophy and menopause not mandatory during medical training. “They [UTIs] are awful for young women, and yet they can be dismissed because the guidance is very much that this is what women get because of our anatomy,” she says. And the problem is then compounded by routine tests proving inadequate for diagnosing many UTIs.

“We’re so lacking in research. It’s not a sexy thing researching UTIs. But a woman knows her symptoms,” says Dr Arif. “As a GP, I believe the woman. Women don’t come to me because they want a day out, they come to me because they are genuinely at the end of their tether.

“The urine cultures aren’t always going to be specific. You sometimes get women who get symptoms but it doesn’t show up. Infection changes cells and when it changes cells it can be left in a permanent manner, which means you’re prone to even more infection. It has to be treated in a far more comprehensive way than a bug in the urine. Women should be prescribed antibiotics even before we get a urine culture.”

Prescribing guidelines from NICE do still rely on a urine culture as the primary test for UTI, and because it is such a commonly seen problem within general practice (and because most women do recover very quickly with a straightforward course of antibiotics) it can be treated by GPs as an easy-to-solve problem. As Dr Robert West, a GP practising in South London, explains: “10 minutes to speak to a patient, manage, prescribe, examine, organise a test and document everything you have done is not long. I have definitely heard GPs speak about being able to manage UTIs quickly. I suspect some see a UTI consultation as an opportunity to catch up, much in the way that viral upper respiratory tract illnesses in otherwise well people are.”

It is also rare for patients to see the same GP twice, which means women with recurring UTIs do not feel like they have constant support. “Continuity of care, the cornerstone of primary care and good medical practice, is being eroded,” Dr West says. “There are so many different places you can get treatment for UTIs – GPSs, 111, out of hours GPs, Babylon, PushDr – and it is very difficult to see the same GP, so often you are seeing a GP to ask for a second opinion and that is the first time they are reviewing you. If you were able to follow-up with the same GP for health problems it would make management and referrals easier.”

What to do if you’re suffering recurrent UTIs

Dr Nighat Arif shares her advice

· Keep track of your symptoms, and what made it better or worse. Doctors need dates and times, and to know what you were doing beforehand

· As soon as you get symptoms, take a urine sample and leave it in the fridge so your GP is able to test your urine at the point when it’s causing you pain

· Treat your symptoms as best you can at home, with water and d-mannose (available from large pharmacists and health food shops)

· Find out which GP at your practice specialises in women’s health and ask to see them. Book a follow up appointment in advance so you’re able to see the same person again

· Read the NICE guidelines and make sure they are being followed by your GP. Challenge them if they are not

· Never be shy to talk to your GP about your concerns and expectations

There is only one dedicated research centre focused on recurrent UTIs for women in the country, based at London’s Whittington Hospital. Lead researcher Dr Rajvinder Khasriya, who also runs the BIIG-Bladder infection and immunity research group at University College London, says by the time she sees women they have often been dealing with bladder pain for an average of six years, and they all share the same story of feeling fobbed off or disbelieved by their doctors.

“Not only do we deal with the UTI but the overlap of the upset that they have with the medical profession,” she says. “The themes that come out are feeling dismissed, not being believed, being told that this is ‘just women’s issues’ and that they’ve got to put up with it. There’s no acknowledgement that this [condition] seriously affects all aspects of life: the ability to go to work, to have a relationship, to look after children,” she adds.

“Women feel relieved to come to our clinic. They have this relief because they feel we listen to them and we believe them. I think that is a point of reflection for the medical profession.”

Dr Khasriya’s clinic replaces urine cultures with tests using a microscope to pick up what is contained in the urine, not only bacteria but also white blood cells to see how the body is reacting to it. The latest research, she says, suggests that urine is not sterile and everybody’s bladder contains some bacteria – but for some women it causes disease, while others remain well. Doctors don’t yet understand why.

Her clinic offers a novel treatment: very long-term high dose antibiotic treatment over the course of at least a year, alongside other drugs which help to kill bacteria in the urine. She has an 80 per cent success rate of seeing her patients significantly improve their symptoms and quality of life, but it’s an approach that is a long way off being integrated into NHS primary care.

Happily, some GPs are no longer ignoring the pain of recurrent UTIs. Sarah’s battle with UTIs came to an end when a new doctor suggested a new drug treatment available over the counter or on prescription, an antiseptic agent which acts on the urine called methenamine hippurate, or Hiprex.

“She’d read my years of notes and was concerned. She listened to me. I told her, very tearfully, that I was so tired of it,” Sarah says. “She told me there was a new drug she’d like me to try. I told her I would try anything.” Sarah has been on that medication – and free of UTIs – for three years, and her mother who was also prone to similar infections has even followed suit with good results. “It is a revolutionary drug,” Sarah says. “I am still telling people about it today. Some women report it only giving them a couple of years of relief but I haven’t looked back.”