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The Guardian - UK
The Guardian - UK
Politics
Kate Muir

‘Millions of women are suffering who don’t have to’: why it’s time to end the misery of UTIs

Dr. Rachel Rubin, a urologist and sexual health specialist, at her clinic in Rockville, Md., Sept. 1, 2022. (Shuran Huang/The New York Times)Dr. Rachel Rubin, a urologist and sexual health specialist, at her clinic in Rockville, Md., Sept. 1, 2022. Rubin said doctors need to better understand the clitoris. (Shuran Huang/The New York Times) Credit: New York Times / Redux / eyevine For further information please contact eyevine tel: +44 (0) 20 8709 8709 e-mail: info@eyevine.com www.eyevine.com
‘The issues are discomfort, pain, irritation, burning and itching’: Dr Rachel Rubin, a urologist and sexual health specialist, at her clinic in Rockville, Maryland, USA. Photograph: Shuran Huang/New York Times/Redux/eyevine

Welcome to the Great UTI Scandal, a story of unnecessary suffering for millions, needless hospital admissions, antibiotic resistance, sepsis-related deaths and basic ignorance of the science around female bodies. Women are 30 times more likely to get a urinary tract infection than men, and UTIs are agonising and occasionally fatal. In the past five years, there were 1.8m hospital admissions involving UTIs in England alone, plus even more GP appointments. This is not just a gender health gap – it’s a dangerous crevasse. But is there another way?

“Killer UTIs! Kept getting them, doctors were dismissive and directing me to chemist treatments, so gave up with them. Got an infection that tracked to kidneys, rang doctors twice for help and was turned away. Ended up as emergency admission to hospital via blue lights ambulance and a week’s stay on IV antibiotics”: @staveleynatalie

My @menoscandal Instagram is filled with messages like this. I’ve written a book on the menopause and made two Channel 4 documentaries with Davina McCall, so tales of perimenopausal pee panic, urethras and UTIs are my bread and butter. I’ve also talked to experts, here and in America, about how we can blitz the rate of UTIs with one simple change in the way we treat women (and some non-binary people and trans men). It could save the NHS millions.

Younger women do suffer from infections, dehydration and post-sex cystitis, but the brunt is borne by older women. UTI rates shoot upwards when women hit 45 and are perimenopause. The loss of the hormone oestrogen leaves the vulva dry in menopause (and sometimes post-pregnancy), a condition previously called “vaginal atrophy” – perhaps because early medics were only focused on those lady parts useful to men.

Desperate lady toilet door signToilet door sign of desperate lady needing the loo.
Desperate for help: ‘Got an infection that tracked to kidneys, rang doctors twice for help and was turned away.’ Photograph: Peter Dazeley/Getty Images

Now, the hormone deficiency has been renamed Genitourinary Syndrome of Menopause (GSM) and Dr Rachel Rubin, a campaigning urologist in the States and assistant clinical professor in Urology at Georgetown University Hospital, explained why. “This is not just vaginal dryness. GSM is a very serious condition. Without hormones in the local environment of the vagina and the bladder, you are susceptible to both genital and urinary symptoms. So, yes, it’s about pain with sex, decreased orgasm, decreased arousal. As a sex doctor, those are important to me. However, as a urologist, the much more serious issues are discomfort, pain when sitting, irritation, burning and itching of the vulva, urinary frequency and urgency. And the thing that kills elderly people all the time is urinary tract infections, which can lead to sepsis, worsened dementia, and death.” The NHS says the death rate for hospital UTIs is 4 in 100, rising to 1 in 10 in those aged 95 and over.

Just as we have a gut microbiome, we have a vaginal microbiome. Lack of oestrogen means the lactobacilli and other good bacteria in the vaginal microbiome can be replaced by pathogenic ones. Oestrogen also helps collagen production, and collagen disappears from the vulva by up to 30% in the five years after menopause. We invest millions in collagen supplements and anti-ageing serums for our faces, but it never occurs to us that precisely the same process goes on down below.

More than half of women get UTIs and so many of us know the burning sensation on peeing, the rushing to the toilet every 10 minutes, the abdominal pain and fever, plus the time it takes to get the damned thing sorted, again and again. That’s one reason why the nasty bacteria are winning: one in four women have a UTI strain resistant to certain common antibiotics.

“Thinking about UTIs again brought to mind early-hour bouts of rolling around on the bathroom floor in agony. Middle-of-the-day baths in tears, and leaving dinners, parties, all kinds of fun things in an absolute panic as soon as I felt the familiar change”: @ageless.menopause.info

But guess what? We can prevent GSM for women in perimenopause and menopause by giving them a safe, incredibly low dose of vaginal oestrogen, which plumps the tissue back up again, feeds the vaginal microbiome and reduces UTIs by 50%, according to the American Journal of Obstetrics & Gynecology. It’s safe for most breast cancer patients, too, it’s a win-win on the sex front and you can take it alongside normal HRT. Vaginal hormones come as a cream, gel or pessary and are cheap, costing the NHS around £5 for the cream. Meanwhile hospital admissions for people with UTIs stand at around £400m a year.

Professor Chris Harding, a consultant urologist at Newcastle upon Tyne Hospitals NHS Foundation, said: “Vaginal oestrogen replacement has got good evidence in terms of trending UTI frequency downward and the absorption of oestrogen given vaginally is minimal so it’s pretty safe. And it’s great to have a non-antibiotic alternative to increase prevention. I sometimes use it in pre-menopausal women, too, to change the microbiological environment of the vagina.”

‘In the US, vaginal oestrogen has been approved by the FDA for vaginal dryness and painful sex – but not for an overactive bladder and UTI prevention, although we know it overwhelmingly works’: Dr Ashley Winter, aka ‘the Angel of Estrogen’.
‘In the US, vaginal oestrogen has been approved by the FDA for vaginal dryness and painful sex – but not for an overactive bladder and UTI prevention, although we know it overwhelmingly works’: Dr Ashley Winter, aka ‘the Angel of Estrogen’. Photograph: Sean Johnson

Although some GPs and urologists are getting the message and prescribing vaginal oestrogen, more work needs to be done. In one California study in 2003 of over 5,000 women (average age 70), more than half had reduced UTIs after a year on vaginal oestrogen and a third had none whatsoever. Dr Rubin said: “We have millions of people in nursing homes who are dying of UTIs [in the US] and we have lots of data since the 1990s to show that vaginal hormones massively decrease urinary tract infections. We have new data. We have old data. We have so much data. The problem is that nobody’s talking about it.”

The science is often ignored. A recent NHS England press release on UTI prevention advised women to stay hydrated and wash themselves more, but failed to mention vaginal oestrogen at all, despite aiming warnings at “older adults” and their carers. Is this due to gender bias in medicine, embedded disinterest in the post-fertile vagina or a complete misunderstanding of the low risk around local oestrogen?

Then to make matters worse, Food and Drug Administration “black box” warnings in the US, and patient leaflets for vaginal oestrogen products in the UK, have not been updated and still list risks like blood clots, stroke and even memory loss, which have now been proven incorrect. No wonder doctors are cautious. Dr Ashley Winter, a Los Angeles urologist colloquially known as “the Angel of Estrogen” on X, formerly Twitter, said: “In the US, vaginal oestrogen has been approved by the FDA for vaginal dryness and painful sex – but not for an overactive bladder and UTI prevention, although we know it overwhelmingly works. So there’s an education gap. I never learned it in medical school. That’s why you have to bootstrap the education through social media.”

Sometimes a simple UTI can be a turning point in life. It was for my mum, Ella Muir, who used to work as a personnel manager in a Glasgow department store. She was living at home independently with Alzheimer’s disease in her 80s, helped by a wonderful carer who went in twice a day to provide meals and even take her out for coffee to Dobbies Garden Centre. But when her carer and I were away for two days one August, the replacement carers failed to turn up and Ella became dehydrated, confused and delirious. She was taken to hospital, diagnosed with a UTI, and given intravenous antibiotics. By the time I flew in that evening, my mother was crashed out asleep.

She rallied a bit physically over the next few days, but not mentally. The UTI had taken its toll. For the first time, she didn’t recognise me and sometimes thought that I was her mum. She wasn’t eating properly, so her carer and I took turns to come in and feed her, something she had always managed by herself. She struggled to stand or go to the hospital bathroom. Although the delirium went and she recognised us again, something had shifted mentally. Ella never came home to her flat. She started using a wheelchair and moved to a nursing home where she died less than a year later, listening to music after lunch.

‘I wasn’t taught about menopause in my medical training. I wasn’t taught about the role of oestrogen in bladder functioning’: Dr Charlotte Gooding.
‘I wasn’t taught about menopause in my medical training. I wasn’t taught about the role of oestrogen in bladder functioning’: Dr Charlotte Gooding Photograph: Dr Charlotte Gooding MBBS MRCGP GP with Special Interest In Menopause Care/PR

Now I know that dehydration was the cause of the UTI, and even if Ella had had decades of vaginal oestrogen, it might have made no difference. But I had no sense until then that UTIs could have greater consequences and permanent physical and mental losses. There is already emerging evidence that infections, including UTIs, are themselves associated with an increased risk for dementia, according to a 2021 Lancet study. Professor Harding explained: “UTIs can cause delirium, specifically in elderly patients, and that can make them disoriented and affect their cognition. A severe infection might just be sufficiently debilitating to cause it and then getting back to your baseline is quite difficult.”

How many UTIs like that could be avoided? Back in 2015 when Ella died, I had never heard of vaginal oestrogen or atrophy, but now when I think of the truckloads of incontinence pads arriving every week at care homes like hers and the other women sitting in constant genitourinary discomfort on those plastic-covered armchairs with the television blaring, I wonder if we couldn’t do more for them.

So I talked to Dr Charlotte Gooding, a British Menopause Society specialist and GP in the northeast of England. “UTIs are a large chunk of GP workload in primary care and it’s mostly women of menopausal age. The majority of my home visits are to older women, particularly in care homes. They ring up to say a patient is unwell and delirious and I’ve got to assess and try to keep her out of hospital and make sure she doesn’t get sepsis. Mortality from urosepsis is huge. When people get delirious and need to go to the bathroom, they might climb over the bed rails and fall and break their hip. I’ve seen that many times and it makes me incredibly sad walking round care homes, knowing we could do more to prevent UTIs in the first place.” Over half of hospital UTI admissions are for people over 65 and a quarter of all sepsis cases are related to UTIs – that’s more than 50,000 a year in the UK.

Dr Gooding believes that no one is looking at the bigger picture and takes direct action when she can. “Twice weekly oestrogen pessaries, such as Vagifem, are very effective, but can be tricky for older women who might have dexterity issues and their carers don’t always have time to help. But an Estring hormonal vaginal ring is great, like a floppy hairband with a jelly consistency and you can bend it to slip it in and leave it there for three months to oestrogenise the tissues.” She sees improvement “even for women in their 80s. Some people find the idea of consent to vaginal rings difficult and I understand that, but sometimes there is a medical ‘best interest’ argument for that kind of care. So much better than ending up catheterised or using incontinence pads or with urosepsis.”

But while Dr Gooding is doing good, many medical professionals are not up to speed on the efficacy of vaginal oestrogen. She explained: “I wasn’t taught about menopause in my medical training. I wasn’t taught about the role of oestrogen in bladder functioning. We were just taught to treat UTIs with antibiotics, and it can make your heart sink, watching people go round in circles, in and out of hospital and care homes with embedded UTIs that we can’t seem to help.” She completed her own menopause qualification after training, but amazingly menopause will only be a compulsory module in medical schools next year – although it affects half the planet.

Men suffer UTIs, too, making up about 20% of cases. I remember my dad, Douglas, had a UTI a couple of times after he had a catheter following a stroke, but there was no mental change or delirium. For men, a UTI can often mean something more serious and Dr Gooding says they tend to get seven days of antibiotics compared to the three offered to most women. “Men are just designed much better – everything is more spread out and they’re got a longer urethra. When they get a UTI it is often a sign of something else going on in the immune system – their prostate affecting the emptying, or cancer, or being catheterised.”

Those who suddenly see UTI prevention through menopause glasses are evangelical about getting the message out. In the UK, Dr Louise Newson, who runs the biggest private menopause clinic in the world and created the free menopause app, Balance, wants to encourage women to ask their GPs for vaginal oestrogen and says it is never too early or too late to take action. “Women in early menopause, breastfeeding or even some women using the contraceptive pill can benefit from using vaginal hormones, and so do older women who start having problems in their 60s, 70s or even 80s.”

Vaginal oestrogen is available over-the-counter in UK pharmacies, but only one brand, Gina, at £29.99 for 24 pessaries. That’s useful for emergencies, but most women need to continue taking it for life. In America, where getting full-body hormone replacement therapy on insurance is hard, at least vaginal oestrogen cream is available for $20. Dr Winter points out that the States could save billions if they made it free. “I say again and again that oestrogen prevents UTIs and prevents UTI-like symptoms. And until every single preventable UTI that can be addressed with oestrogen is done, I will not stop talking about this. Millions of people who are suffering don’t have to.”

Dr Winter needs to have a word with public health bosses in the UK, too, who seem to be on another planet. This autumn, “ahead of what is expected to be another busy winter”, NHS England and the UK Health Security Agency put out a “new awareness campaign to help reduce hospital admissions for urinary tract infections”. (Professor Harding pointed out that infections actually “peak in the summer due to dehydration”.) The NHS warned that UTIs, particularly for older women, “are one of the leading causes of life-threatening E coli bloodstream infections.”

Yet there was no mention whatsoever of the preventive effect of oestrogen.

“I had recurrent UTI’s from the age of 43-45 until I was finally diagnosed as perimenopausal and started HRT. The UTIs continued until I asked for Vagifem and then they finally stopped. During this period I took 20+ courses of antibiotics, I’m still paying for this now with gut issues. I was even referred to a urologist at age 43, but due to my age, no one thought low hormones could be the source of my problem”: Anon, Instagram

If only the press release reflected what’s on Instagram, or findings in the Journal of Obstetrics and Gynaecology way back in 2014, which looked at 44 studies and concluded: “All commercially available vaginal oestrogens… have additional utility in patients with urinary urgency and recurrent UTIs.” NHS England told me that although vaginal oestrogen was omitted in the press release, according to National Institute for Health and Care Excellence guidance elsewhere, “It seems vaginal oestrogen can be used as an option for recurring UTIs off-licence.” They directed me to the UK Health Security Agency for more information – who said the same thing. I spoke to the agency’s Dr Colin Brown, deputy director for antimicrobial resistance, who told me: “It is a valid point about the role of it [vaginal oestrogen] in the prevention of recurrent disease. That might be something we can take back to our colleagues.” I got the impression Dr Brown was doing his best, overseeing huge of amounts of work on antimicrobial resistance, checking out different strains and changing the type of antibiotics in certain resistant areas. Antibiotics for UTIs will be available over-the-counter from pharmacists in February 2024 and Dr Brown is hoping this will increase the number of trackable urine tests. But it all sounds more like firefighting than prevention.

Aside from vaginal oestrogen, Professor Harding pointed me to European Association of Urology 2023 guidelines, which looked at lots of promising non-antibiotic options, including certain probiotics taken orally to improve the vaginal microbiome and the sugar supplement D-Mannose, which helped in a few small trials. Cranberry products, however, seemed to be pretty ineffective. Another NHS-approved hormonal solution, perhaps the best, is Prasterone, containing DHEA, which converts to oestrogen and testosterone, and binds, with restorative powers, to the oestrogen and many testosterone receptors in the vulva.

We’re not just talking about UTIs here. We’re talking about a whole generation of women who have kept their miserable symptoms secret and have just carried on. Now, however, the omertà is over, thanks to the growing menopause conversation, and change could be instant, if doctors and women speak up and, perhaps, if the NHS put out a press release simply stating: “Vaginal oestrogen can half UTIs in older women and help prevent antibiotic resistance!”

The news is spreading fast: there’s even been a literary foray into the urinary tract. Novelist Nina Stibbe recently published Went to London, Took the Dog, a diary of leaving her family home in Truro at the age of 60 and running away to London for a year. “I’ve always been prone to laughing and weeing myself a little bit,” she told me, “but I was out with my dog, Peggy, in the city, and we got into a tussle over a chicken bone in the street and I weed myself and had to walk back with wet trousers. I realised I’d just been ignoring it for years.” In the book, Nina wees herself laughing while having spaghetti with the writer Nick Hornby. She begins to use Tena Lady pads for safety and tries pelvic-floor exercises, which don’t make much difference.

It was at that point I met Nina and her landlady, author Deborah Moggach, at the launch of my 89-year-old neighbour’s painting exhibition. We discussed the joys of general hormone replacement therapy and vaginal oestrogen, and Debby said: “Will that stop Nina peeing herself?” I suggested there was hope, posted my book through their door with the relevant page marked, and Nina went on HRT and vaginal oestrogen. The HRT took a while to settle down, but the Vagifem was instantly popular. “It made a difference within a week. I’m almost completely cured now, dry as a bone,” she said. Nina got her mum on vaginal hormones, too. “She’d been on and off antibiotics for UTIs for 10 years, and now she’s doing much better.” Nina had been worried about including the “UTI narrative arc” in her book, but it turned out to be an incredibly popular topic on her book tour. “The audience is loving it.” Spread the word.

Everything You Need to Know About the Menopause (But Were Too Afraid to Ask) by Kate Muir is published by Simon & Schuster at £9.99. Buy it for £9.29 at guardianbookshop.com

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