Warning: This story contains reference to suicide

An MP says she was left "feeling like a drug user" while trying desperately to find pain relief for chronic urinary tract infections (UTIs).

Labour MP Dr Allison Gardner has been living with the "searing pain" of recurrent infections for about 10 years, after first experiencing symptoms with perimenopause.

According to the Chronic Urinary Tract Campaign (CUTIC), more than 1.6 million women in the UK suffer from chronic lower urinary tract symptoms, but there is no official medical definition of the condition.

That is something Gardner is trying to change, with the support of a cross party group of MPs in Parliament.

Gardner told the BBC how a lack of consensus on what constituted a chronic UTI left her feeling sidelined by doctors, who did not always understand the condition and were limited in the length of antibiotic courses they could prescribe.

"You end up hunting for a decent length of antibiotic courses that will give you some relief," she said.

UTIs are caused by bacteria entering the urethra. As women have a shorter urethra than men, bacteria are more likely to reach the bladder or kidneys and cause an infection.

Chronic UTIs are infections where symptoms do not go away, and do not clear with a short course of antibiotics. They can also be difficult to diagnose, due to a lower level of bacteria shown in urine samples.

"It's a searing pain every time you go to the loo" said Gardner, 60. "It's just like hot needles being inserted inside you and just burning, burning, burning."

She told the BBC she had felt "gaslighted" by medics and had been told to "wipe yourself better" after describing intense pain.

She was even told by one consultant to give up sex because it can cause a flare up.

"You've got to fight all the time just to get treated sensibly and [not told] you've got anxiety, depression or are attention seeking," Gardner said.

The pain and lack of answers about her condition eventually led her to a very dark place.

"It got to the point where [I thought] 'if this is how my life is going to be, I can't carry on'," she said.

She was so desperate she even considered selling her house to pay for private surgery to have her bladder removed.

It was around that time three years ago that she discovered Dr Cat Anderson, a Staffordshire-based GP who works in private practice and for the NHS.

She was the first to identify that Gardner's symptoms were related to the menopause and prescribed her Hormone Replacement Therapy (HRT).

"I had two years free of UTI - I just had my life back," said Gardner.

Asked whether going private went against her Labour principles that healthcare should be free, Gardner said: "You're stuck with a choice aren't you?

"You either suffer or you go private... so I don't judge."

She added that she believed everyone should have access to the healthcare they needed.

Anderson specialises in challenging UTI cases, and is leading a group of medical experts to develop a medical definition of chronic UTIs to differentiate it from other conditions.

The panel hope that an official definition will pave the way for better diagnosis and treatment.

Persistent infections, Anderson said, could "ruin a patient's quality of life" - limiting their ability to work or do something as simple as pick their children up from school.

She has also seen people "who are quite literally driven to suicide" due to "awful" symptoms.

The expert medical panel that Anderson heads up with Sachin Malde, a London-based consultant urological surgeon, is planning to deliver its official definition of chronic UTI in 2027. This will then be presented to the National Institute of Health and Care Excellence (NICE).

As to why there is no current definition of chronic UTI, NICE said it had recommended further research into chronic UTIs to develop a "clear evidence base" for any recommendations.

A spokesperson for NHS England also confirmed that currently there was no single national dataset that specifically captured all cases of chronic UTI as a distinct clinical diagnosis.

"This is not just a 'nice to do', this would be transformational - not just within the UK, but globally," said Gardner, of the work she is doing with other MPs in the All Party Parliamentary Group (APPG).

In 2023-24, the UK Health Security Agency (UKHSA) found that UTIs accounted for 1.2 million hospital bed days, costing hospitals and the NHS more than £604m.

Dr Ron Daniels, founder and chief medical officer of the UK Sepsis Trust, said as many as 20% of all sepsis cases - which can prove fatal - are thought to originate from the urinary tract.

Beyond the definition and improving diagnosis and treatment, the APPG wants to see all GPs trained on chronic UTIs and introduce a "passport" for patients so they do not have to repeatedly explain their medical history.

In April, then-health secretary Wes Streeting said the NHS had an "appalling culture of medical misogyny" where being "ignored, gaslit, humiliated and disrespected, were common experiences for far too many women".

Liberal Democrat MP Luke Taylor, who co-chairs the APPG with Gardner, said the group was "disappointed" that Streeting's announcement of the women's health strategy "didn't even mention UTIs, let alone chronic UTIs".

The group, he said, has now set its sights on lobbying the government to invest in research and improve care.

When we asked the Department of Health and Social Care what specific improvements patients with chronic UTIs might see, a spokesperson said they were committed to "reducing the impact" chronic UTIs have on people's lives and had invested in research "to ensure that women are listened to at every stage, and given access to the high-quality care they need".