Content warning: This article mentions the mental health impacts of chronic UTIs.

Traumatising. That’s the word Genevieve Burke uses to describe the period of her life when she battled with chronic urinary tract infections (UTIs).

The 26 year old would spend her day constantly rushing to the toilet, desperately needing to pee. But every time she got there, nothing would come out. Instead, she would sit there in agony.

“It felt like I was peeing out hot shards of glass,” she says. “Sometimes I would just bawl my eyes out crying.”

What is a UTI?

A UTI occurs when bacteria sneaks into the urinary system and causes an infection. More than 80% of UTIs are caused by a bacteria found in the gut called E. Coli, which is found in poo and can enter the urinary tract through the urethra (the part where you pee). 

UTIs are particularly common after sex because sexual activities can make it easy for bacteria to travel around. While UTIs can happen to anyone, women and people with uteruses are much more likely to get them because their urethra is shorter, so there is less distance for this bacteria to go from the anus into the urinary system. 

Along with extreme physical discomfort, people who live with chronic UTIs can experience severe mental health issues and some even feel suicidal or have symptoms “akin to PTSD”. 

If left untreated, UTIs can also spread to the kidneys or blood and become life-threatening. 

Despite the severity of UTIs, the “ineffective” way they are tested, diagnosed and treated means patients are “mistreated and suffer”, chronic UTI specialist Dr David Bivona says. 

UTI after UTI

Genevieve would often go to A&E for her UTIs, desperate for help. One of these times she was given a strong antibiotic and told it would stop her from getting another UTI. 

Genevieve says despite having recurrent UTIs for a long time, she was never diagnosed or treated as having chronic UTIs. Photo: Supplied. 

“I took them for a week. And then a week later, I started peeing blood,” she says.

“I went to my doctor and they said I wasn’t given the right antibiotic and now I had an early onset kidney infection,” she says. “After that I constantly got UTIs.”

During lockdown, Genevieve says she would get a UTI every time she had sex. But even when she stopped having sex for months, the UTIs would still pile on. 

“It would be a new one every week or it would be the same UTI that would last weeks and weeks,” she says. “Sometimes I could flush it away in time by drinking water but sometimes I would pee blood straight away.”

There was a period where Genevieve was getting antibiotics from either her General Practitioner (GP), A&E or a pharmacy every week. 

“I’ve dealt with UTIs for seven years and I’ve taken antibiotics for them so many times I’ve lost count,” she says. “I want to say it would probably be around 50 times.”

The struggle to treat chronic UTIs

UTIs are common - 60% of people with uteruses will have at least one UTI in their lifetime. And for people who have had a previous UTI, about 25% to 30% of them will have another UTI within six months. 

For some, they will continue to get UTIs regularly and their symptoms may last for weeks, months and even years.

This is what’s known as a Chronic UTI - these are a persistent form of UTI where bacteria becomes embedded within the wall of the bladder so it evades antibiotics and becomes resistant to treatment. 

This has made chronic UTIs extremely difficult to treat, and even diagnose.

The way we test for UTIs is outdated

Genevieve can remember times when she was experiencing intense UTI symptoms, but when she was given a UTI urine test, it came back negative. 

This is because urine UTI tests, which have been the global standard for UTI testing since the 1950s, are often inaccurate and can miss up to 50% of infections, according to urogynaecologist Dr Payam Nikpoor from women’s health organisation Jean Hailes.

UTI specialist Dr David Bivona says the lack of understanding on how to effectively test and treat chronic UTIs means patients are “left in limbo”.

“I’m hearing people get symptoms for a UTI, it gets treated with antibiotics. The symptoms disappear for a short period of time and then they return again,” he says.

“So people go to their GP and they have their urine tested. But when the test comes back negative, they don’t know how to treat it and their symptoms get worse.”

A typical treatment for a UTI is a short course of antibiotics - usually three to seven days. While this is often effective for treating one-off UTIs, for some people, it will only make them feel partially better but not cured and their symptoms can return quickly.

At this stage, Bivona says a urine test will often return as negative - so diagnostically the patient will be declared free of infection and may not have further treatment. This is despite people still experiencing painful symptoms.

“It seems that this is one of those areas of medicine where practitioners get stuck with the misunderstanding, that in order for us to treat the patient, we have to have a positive test,” Bivona says.

“But it's an anomaly because there are plenty of areas of medicine where we treat the patients regardless of the test because we know very well the test has limitations.”

Chronic UTIs are also being mistreated

Sophie Coomber, 26, says she was stuck in a perpetual cycle of getting UTI symptoms, urgently needing to go to the A&E, getting antibiotics, and then having her UTI symptoms come back not long after. 

“I would never feel like I could wait to see my doctor because the pain was so non-functional for me and this was when wait times were particularly long from Covid-19. But when you go to A&E, they are so busy they are just triaging you through so they just gave me antibiotics and told me not to do [sexual] hand stuff,” she says.

“I was never told I should do anything else other than continue going to the A&E and paying usually over $100 for an appointment to get these antibiotics. So I just kept going, I was going once every month or every couple of weeks.”

Genevieve and Sophie say despite having recurrent UTIs for a long time, they both weren’t diagnosed or treated as having chronic UTIs. 

“If somebody's repeatedly getting the same illness over and over again, I think that's obviously different from a one-off,” Sophie says. “But no one identified mine as chronic, they just said it was another UTI and treated each one like a one-off. And I think that’s where the treatment of chronic UTIs is falling apart.”

The issue with how chronic UTIs are treated

Dr David Bivona says treating patients with chronic UTIs as having a one-off (or acute) UTI is causing patients to suffer. 

Dr David Bivona says the way chronic UTIs are routinely diagnosed and treated is causing patients to “suffer”. Photo: Supplied. 

“They get mistreated because they are misdiagnosed,” he says. “They end up being given a prescription for antibiotics for a few days but this is inappropriate because they are not treating an acute UTI. 

“We need to treat these cases as chronic, and we need to do it carefully by continuing to check in with that patient, but there is sometimes no continuity of care,” he says. 

So how do you treat chronic UTIs?

Bivona says there isn’t a one-size-fits-all for treating chronic UTIs but the “logical step” is to find the antibiotic that has been effective for the patient in the past and sustain it. 

“I would give them a two or three-week prescription and tell them to contact me before they finish it. If someone is feeling better but still has symptoms, I would prescribe them more antibiotics and tell them to continue until they have no symptoms. When the symptoms go away, keep taking the antibiotics for another two weeks,” he says.

Urologist Liam Wilson says his clinic tries to “avoid repeated or prolonged courses of antibiotics if at all possible”. He says this is because “we want to avoid antibiotic resistance, and also the potential side effects of long-term antibiotic use”.

Antibiotic resistance is when bacteria become resistant to the medicines used to kill them. When we use antibiotics, some bacteria die but resistant bacteria can survive and even multiply. The overuse or misuse of antibiotics makes resistant bacteria more common and this has led to some health professionals prescribing antibiotics more conservatively. 

However, Bivona says the “stop and start” approach to treating chronic UTIs, which people like Genevieve and Sophie have gone through, can be more likely to cause antibiotic resistance than effective long-term use. 

“The way you cause antibiotic resistance is if you expose bacteria to antibiotics for a period of time that is not long enough to eradicate them, some of them survive but you stop the antibiotic. Then the symptoms come back so the patient sees another person and gets a different antibiotic.”

“Provided the diagnosis is correct and the treatment is correct, appropriate use of long-term antibiotics doesn't cause resistance. Random use of stop-and-start antibiotics for a misdiagnosed condition is how you cause resistance,” he says.

A study by the National Library of Medicine says long-term use of antibiotics can increase the risks of antibiotic resistance so it should only be used with the “most intractable UTI cases where more conservative measures have failed or cannot be effectively utilised.”

Other research has also found long-term use of antibiotics can cause changes in gut microbiota. This change can be linked to risks of various chronic diseases, such as cardiovascular disease and certain types of cancer.

Bivona says effective treatment is about “balancing the benefits versus the risk”. 

“I treated someone who would wake up five, six, seven times a night to try and pee. They cannot go for a walk because they have to think about where the nearest toilet is. Their sexual life is gone because they're paralysed by their symptoms,” he says.

“In these serious chronic cases which have evaded treatment, my suggestion is that we try this treatment because their life is completely controlled by their condition, so in their eyes, they have little to lose and a lot to potentially gain.”

Bivona says people with chronic UTIs being treated through A&E is also a concern because it means patients won’t be able to easily keep in contact with the same health professional. 

“The practitioner needs to be available to contact before you go off the antibiotics. This is why I give patients my number. Otherwise, they are going to end up in A&E and see someone else who may prescribe them something different.”

Bivona says controversy and misinformation among health professionals when it comes to antibiotic resistance means “patients are mistreated and suffer.”

“Why would we have to demonise a drug versus so many other drugs that we use long term? Provided the diagnosis is correct, there is nothing wrong with using long-term antibiotics. It's effective. We just need to do it carefully.”

After long standing pressure from campaigners, the National Health System's (NHS) website in the UK formally recognised chronic UTIs as a condition last year and acknowledged the inaccuracy of current testing methods of UTIs and how long-term antibiotics can be effective to treat them. But without the same recognition in Aotearoa, the way chronic UTIs are tested and treated remains inconsistent and often ineffective. 

There are other ways to manage chronic UTIs

Urologist Liam Wilson says there has been “very little progress has been made in developing testing that looks at why certain women are predisposed to recurrent infection”. 

This means preventative measures are vague and non-specific. But some things like high-dose vitamin C, d-mannose, Hiprex, and cranberry juice or tablets can be helpful for some people, he says.

“There are also vaccine type options which can be very helpful, although they are not funded by Pharmac or approved by Medsafe.”

Because these methods of treating UTIs are not prescribed by GPs but instead can be bought over the counter at pharmacies, they are sometimes not mentioned by health professionals. 

People with chronic UTIs are stumbling through treatment on their own

Grasping at straws and trying to work out how to end the painful cycle, Sophie started reading Reddit forums and scanning through chronic UTI support groups looking for help. 

She read story after story of people who were in her same position, some who have been in this cycle for 10 years or some who had dropped out of uni, quit their jobs or lost relationships because of it. 

This is where Sophie read some people were taking d-mannose and using probiotics. 

D-mannose is an oral supplement made of sugars that can be found in some fruits and vegetables. It is used to prevent UTIs and can be effective in reducing symptoms, however, there is only a small amount of research on its effectiveness.

“It was never recommended to me by any medical professional and was something that I heard about completely anecdotally. But the antibiotics weren’t working for me so I stopped and just started just living through the UTI and taking d-mannose and probiotics.

“After riding the UTIs out for a few months, I finally managed to pull myself out of it.”

Sophie has now been UTI-free for a year. 

Note: While this method worked for Sophie, effective treatment for chronic UTIs will be different for each person. This is why it is important to get health advice from a medical professional who is educated about UTIs. 

Looking back, she says she wished she had more guidance from health professionals and was told about other ways to manage chronic UTIs early on. 

“The impression that I got was less that doctors were being deliberately ignorant and more that there was very little understanding about how to treat a chronic UTI. There needs to be more awareness because right now the current treatment is not sustainable.”

Genevieve agrees that there needs to be more education about UTIs.

“I wasn’t taught how you should pee after sex to avoid one for so long,” she says. “I just wish someone could have told me about things like that or Hiprex (UTI prevention medication) early on, it took me so long to find out.”

Ministry of Health response

Re: News reached out to Health New Zealand - Te Whatu Ora and the Ministry of Health about the problems with how chronic UTIs are routinely tested and treated in Aotearoa.

A Te Whatu Ora spokesperson told Re: News: “It is important that anyone who thinks they may be suffering from a UTI gets a proper diagnosis to make sure that other conditions that can mimic UTIs are excluded – for example chronic urethritis, irritable bladder, candida. This ensures the right treatment can be provided.”

“The causes of recurrent or chronic UTIs are usually complex and multiple. This is why it’s important to get a culture and a check of any antibiotic sensitivities the patient may have, so that the right antibiotic treatment can be given,” the spokesperson says. 

“Once the infection is treated, then it can usually be prevented from recurring by using low-dose prophylactic antibiotics. If symptoms persist, then further investigation – including a Urinary Tract Ultrasound scan – may be needed.” 

A Ministry of Health spokesperson told Re: News: “As with any chronic condition, persistent or recurrent UTIs are best managed with the support of a GP or other healthcare provider who is familiar with the patient and their condition, as individuals may require personalised care and regular check-ups.”

Advice for people with UTIs

• To minimise the risk of a UTI you should pee shortly after sex, according to Urology Care Wellington. This can help flush bacteria away from your urethra. If you can’t manage to pee, you can gently wash this area with water. Mayo Clinic also recommends drinking a full glass of water to flush out bacteria from your bladder. 
• Avoid douching (spraying a stream of water or product into the vagina) or using any soaps or products on your genitals, according to Mayo Clinic. This can irritate the urethra and disrupt the normal balance of bacteria in the area.
• There are several natural treatments for UTIs that can be effective for example high-dose vitamin C, d-mannose, Hiprex, and cranberry juice or tablets. Dr David Bivona says to make sure to try these things one at a time so that you can tell which one is effective. 
• Ura, a product used to neutralise the acid in the urinary tract system, is no longer routinely recommended for treatment of UTIs as it raises the urinary pH, which reduces the effectiveness of some antibiotics, according to Best Practice Journal.
• If you have a chronic UTI, drinking huge amounts of water won’t help. “When it is a chronic UTI, the bacteria is embedded in the walls of your bladder so drinking water is not going to flush them away and it could just make your symptoms worse,” Bivona says. “Drink when you are thirsty, but if drinking lots of water makes you uncomfortable - then don’t do it.”
• If you have chronic UTIs, Bivona says it is best to find a practitioner who is educated about how to treat them and avoid getting prescribed different antibiotics by different health professionals. Instead, he says you need someone who understands your history of UTIs and you can keep in contact with them during the process so they can guide you. “It could be a long journey, so you need to see it as working together in partnership,” he says.
• Here is some more information on chronic UTIs.

Where to get help:

• 1737: The nationwide, 24/7 mental health support line. Call or text 1737 to speak to a trained counsellor.
• Suicide Crisis Line: Free call 0508 TAUTOKO or 0508 828 865. Nationwide 24/7 support line operated by experienced counsellors with advanced suicide prevention training. 
• Youthline: Free call 0800 376 633, free text 234. Nationwide service focused on supporting young people.
• OUTLine NZ: Freephone 0800 OUTLINE (0800 688 5463). National service that helps LGBTIQ+ New Zealanders access support, information and a sense of community.

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