‘Nobody cares’: the women living with untreatable UTIs

“It felt like an alien invading my body. I didn’t know what to do,” said Tamara, 39, looking out of the window of her New York apartment. “I started having panic attacks. I remember one when I just crumpled onto the floor in the kitchen, hyperventilating and begging for my mum.”

It wasn’t always like this. In the early months of 2020, Tamara had a buzzing social life and a tech job she loved. She’d just bought her first apartment and after checking in on renovations, had sat down in a cafe when she received the news that she was being promoted.

“I remember turning to my husband and saying, ‘We’ve never had it better,’” she said. “Famous last words.”

A few months later, the pandemic hit. Both Tamara and her husband lost their jobs. Then the excruciating pain started. It became debilitating. She would double over in agony and feel a constant urge to urinate. When she went to the bathroom, it burned. Tamara was experiencing a urinary tract infection (UTI). She’d had them before, but never this serious. Her life quickly began to revolve around them.

She’s far from alone. Globally, over 400 million people – most of them women – suffer a UTI every year. And up to half are likely to get another within a year.

Recurrent UTIs are complicated; little is known about why or how they happen. But the bacteria causing them are becoming more resistant to antibiotics. This is part of the wider issue of antimicrobial resistance (AMR), which makes common infections unresponsive to the drugs typically used to treat them. While the highest death rates are seen in lower and middle income countries, AMR is a growing threat that stretches across borders. It was the subject of a major pledge at the UN General Assembly this year.

Even in wealthy countries, its consequences are already being felt. For many previously innocuous conditions such as UTIs, the treatment options have been narrowed – leaving women like Tamara suffering for years. Sometimes the infections can be fatal.

‘There’s no research’

Anyone can get a UTI but if you have female anatomy, you’re 30 times more likely to be affected. In women, the tube that releases urine from the bladder, the urethra, is on average an inch and a half long (about a fifth the length of a man’s). This makes it easier for bacteria to enter the bladder or kidneys.

“UTIs are a female problem,” says Dr Elizabeth Kavaler, a urologist based in New York who has been treating UTIs for the last 25 years. “It’s a public health problem and it takes people away from their lives and nobody cares. The doctors couldn’t care less … The pharmaceutical companies don’t care … There’s no research. We have no vaccine.”

Part of the issue, she says, is that among doctors there is no single specialism that takes ownership of the condition – not urologists, not gynaecologists, not infectious disease specialists.

“So these women go to urgent points of care and that’s where they get their treatment. It’s a mess,” she said.

Tamara had experienced UTIs in the past. They began in her late teens and mostly happened after she’d had sex – a trigger for some 60% of the women living with recurrent infection. But back then, Tamara’s UTIs were relatively infrequent and much easier to treat.

In 2006, the infections started happening more often. Tamara began taking antibiotics every time she had sex to prevent an infection from happening again. And for a while, it worked.

Desperate measures

Antibiotics are the most common treatment for UTIs. Usually, a course of these drugs can clear an infection within a matter of days.

But the bacteria that cause these infections are increasingly developing the ability to defend themselves against the antibiotics that are meant to kill them. The more the bacteria are exposed to antibiotics, the more their survival ability can be passed on.

Antibiotic resistance makes UTIs much harder to treat. And if the treatment of the initial infection is inadequate or incomplete, it increases the risk of further resistance and recurring UTIs.

Recent studies have shown that as much as 57% of the bacteria that cause UTIs are resistant to antibiotics – and that this resistance can increase as infections continue to recur.

Many women end up cycling through multiple antibiotics in an effort to clear these infections. In 2021, Autumn, who was 40 at the time, went to her doctor because something didn’t feel right. After several tests, they found harmful bacteria in her urine. She was prescribed nitrofurantoin, an antibiotic, but it didn’t work. Her symptoms persisted.

“The pain – I don’t even know how to explain it,” she said. “A lot of inflammation, feeling swollen throughout the whole abdominal area. But I was also so lethargic I couldn’t get up.”

Within a year she had taken eight tests that indicated the presence of harmful bacteria – including Pseudomonas. She would go on to visit multiple doctors and be prescribed several types of antibiotics. But the flare-ups continued and her tests kept coming back positive with different drug-resistant bacteria.

“I was in so much pain, so I went back to my urologist because I [couldn’t] go to the bathroom” Autumn recalls. “I had one more test and that’s when Klebsiella showed up and it was almost resistant immediately.” Klebsiella is another type of bacterium that can cause UTIs.

The urologist said she didn’t know what to do with her. So Autumn was referred to infectious disease specialists and for pelvic floor therapy.

Desperation has led both Tamara and Autumn to seek out various other treatments. Between them they have tried herbal supplements, surgical procedures and even medicine that must be self-administered through a catheter.

They’ve both seen numerous healthcare providers. Some were more helpful than others, says Tamara, recalling how one told her: “Well, we better get you up and running, your husband isn’t going to wait forever.”

The effects of recurrent UTIs are not just physical – they can affect relationships. “I’d read about it on the [online] groups all the time, people were saying, ‘My husband’s dumped me, he can’t take this any more.’ But my husband [has been] amazing,” Tamara says.

Too much of a good thing

Antibiotic resistance is driven in large part by the overuse of antibiotics. Global consumption of antibiotics increased by almost 50% between 2000 and 2018, with the highest rates of consumption found in higher-income countries such as the US.

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The Centers for Disease Control and Prevention estimates that over a quarter of antibiotic prescriptions given by a doctor in the US are unnecessary. Experts believe this is partly due to pressure from patients. Doctors are also often having to make medical decisions under time constraints and while uncertain of their diagnosis.

But human consumption is dwarfed by that of the meat industry, which is responsible for 73% of global antibiotic use. Because conditions on industrial farms can lead to disease outbreaks among livestock, farmers mitigate the risk of infection by pre-emptively giving the animals antibiotics (a practice banned by the European Union but still legal in the United States). Drug-resistant bacteria can then spread into the wider environment.

It’s not only environmental spread that poses a risk. Eating contaminated meat can also lead to infections that are hard or even impossible to treat. UTIs in particular can be caused by drug-resistant bacteria being spread around the body even after it has passed through the digestive system.

“Most resistance is community based, it’s not individual,” said Kavaler. “We’re all colonised with bacteria. So whatever the hospitals are using and whatever the food producers are using, we’re now eating and we're being exposed to, it’s going to affect us all.”

What happens next?

Experts agree that we need to regulate the use of antimicrobials in both animals and humans, so that they are prescribed only when necessary and after proper testing. But in the US, most of the attention on how to deal with resistance through policy is on reducing medical antibiotic use – of which women account for about one third more than men.

Given the proportion of drugs used by the meat industry, some experts believe priorities should be elsewhere. Kavaler said she takes issue with the idea that “we’re going to regulate women who get UTIs but we’re not going to regulate [other activities] that cause resistance”.

When it comes to UTIs, studies have shown that the current testing system is severely limited. Standard diagnostic testing for UTIs currently consists of a dipstick test, which often fails to pick up the presence of harmful bacteria. And the only way you can tell whether the bacterium is drug resistant is through lab testing, but again this doesn’t always work.

Although new faster and more accurate tests have been developed, these remain expensive and aren’t widely available in many healthcare settings.

For now, the emphasis needs to be on ensuring the right drugs are available at the right time and place. If the initial UTI is diagnosed accurately, it allows for the right antibiotic to be prescribed, decreasing the chances of the infection recurring and becoming drug-resistant.

For Autumn, the focus has turned to looking for new ways of coping with her symptoms, as her tests continue to come back showing drug-resistant bacteria.

Tamara, meanwhile, has gone without an infection for a few months now but still carries antibiotics with her when she travels. She’s trying to look towards the future.

“There's a trauma there and you know we’re working through it but we’re trying to have a baby now, so that’s the next stage,” she says.

“Just being able to be at this stage … a few years ago, I could never have imagined that.”