Clair Evans believes her back pain began during her teens – but she has lived with the debilitating problem for so long that she struggles to remember a time when she wasn’t in agony.

The 47-year-old from Doncaster says her lower back became extremely stiff, and often the pain would radiate down into her legs. She also found that certain movements triggered excruciating spasms.

At the age of 21, when Clair was pregnant, her symptoms became impossible to ignore. Little did she know, this was just the beginning of a two-decade ordeal where she would be repeatedly fobbed off, belittled and misdiagnosed – before finally learning the cause of her pain.

Clair, it has now been confirmed, suffers from axial spondyloarthritis – a form of inflammatory arthritis that tends to affect the spine and surrounding joints. And far from being an isolated case, experts speaking to The Mail on Sunday warn that her experience could reflect a wider issue affecting thousands of women across the country.

Axial spondyloarthritis has long been considered by doctors to be a condition more commonly found in men. However, growing research suggests that women are just as likely to develop it but experience a longer delay in diagnosis.

Experts say this is because women often present with different symptoms to men, meaning they are either dismissed by doctors or told they have other, less severe, conditions.

And while some women show signs of the disease on scans, many do not.

It is now feared there may be thousands of women in the UK who are undiagnosed – depriving them of life-changing drugs that can alleviate their suffering.

At first Clair’s GP put the pain down to her pregnancy. But after her son was born, the problems continued.

She kept visiting her GP – often every few months – to ask for help. She was eventually told her suffering was likely due to sciatica – a nerve pain caused by a compressed nerve in the lower back and legs.

But she was not sent for any scans, offered blood tests or referred to a hospital specialist. The only medicines she was offered were painkillers such as naproxen and diazepam – better known by its brand name Valium and for its addictive properties.

Clair, a psychological therapist, says the problem, quite understandably, affected her entire life. 

‘Simple tasks such as driving or going to sleep were constant challenges,’ she says. ‘It impacted my friendships and relationships because often I wasn’t able to leave the house because I was in pain or too tired from a lack of sleep.’

It was only, in 2022, when a work colleague asked if she had seen a rheumatologist – a doctor who specialises in inflammatory conditions such as arthritis – that things began to improve.

She managed to get a referral to a local rheumatologist, who ordered an X-ray of her back, which showed abnormalities. She was then sent for an MRI – a more detailed form of scan – and was finally given her diagnosis.

That also offered her hope of respite from the pain, because the symptoms of axial spondyloarthritis can be eased.

Clair says she felt vindicated after the years she had spent pushing for help.

However, she also feels angry it took more than 20 years for the NHS to take her seriously.

‘I’ve been ignored my whole life,’ says Clair. ‘And the answer to my problems could have been found if doctors had bothered to offer me a scan sooner. It didn’t have to be this hard.’

Campaigners are now calling on the NHS to ensure that GPs are better educated on the symptoms of the condition in women – and are also urging those who believe they have the condition to push their doctor to refer them to a rheumatologist.

 ‘Too often we hear from women with axial spondyloarthritis who have been dismissed and disbelieved based on their gender,’ says Dr Dale Webb, chief executive of the National Axial Spondyloarthritis Society.

‘Women, particularly those on lower incomes, also receive a lower standard in treatment and care following their diagnosis. This is not acceptable and needs to change.’

About 200,000 people in the UK are thought to have axial spondyloarthritis. While it primarily affects the spine, it can also inflame joints elsewhere, such as the feet or hands.

The first symptom is typically back and buttock pain that wakes patients in the night and is worse in the morning. Patients often experience fatigue, and are more likely to develop the red, itchy skin condition psoriasis and irritable bowel disease.

The symptoms usually appear before the age of 45. The cause is unknown but many cases are thought to be genetic, meaning it is passed down through family.

Over time it can be disabling as it can cause bones in the spine to fuse together.

Until recently this fusing of the bones was a condition called ankylosing spondylitis.

But in 2024 the term was discarded as doctors argued it created a false belief it was a more severe disease, rather than the advanced form of axial spondyloarthritis.

There is no single test which can diagnose the condition. Rheumatologists will often offer patients a blood screening, for a gene called HLA-B27, which around 90 per cent of sufferers carry and is linked to inflammation in the body.

However, it is possible to have the condition but not the gene. Crucially, in its early stages axial spondyloarthritis often does not show up on scans, making it hard to spot. On average, men wait seven years from the beginning of their symptoms to being diagnosed, while women tend to have to wait nearly a decade – if they receive a diagnosis at all.

Experts say that, until recently, it was presumed that two-thirds of patients were men.

But now research appears to show that women are just as likely to be hit.

Men are most likely to experience pain in their spine – women more often have pain in their hips, hands and feet.

The disease also seems to progress quicker in men, which means it can be picked up earlier on scans, as the inflammation begins to damage the spine.

Women are also more likely to develop a form of the disease called non-radiographic axial spondyloarthritis – which never shows up on scans, even when they are experiencing severe pain. As a result they are regularly misdiagnosed, often with the chronic pain condition fibromyalgia.

‘It’s possible that some women who are told they have fibromyalgia may actually have axial spondyloarthritis,’ says Professor Helena Marzo-Ortega, consultant rheumatologist at Leeds Biomedical Research Centre.

‘The problem is that there is a lack of awareness among GPs – who are the first to see patients with these symptoms – that this condition affects women too.

‘So they don’t think to refer them on to a rheumatologist who can diagnose and treat them.’

Experts say that, while axial spondyloarthritis cannot be cured, there are a number of effective treatments that can reduce the severity of symptoms.

This includes injections called biologics that targets inflammatory molecules in the body. The most commonly used biologic is called Humira, or adalimumab, which blocks damaging proteins called tumour necrosis factor, or TNF. The injections are usually self-administered by patients, typically every two weeks.

Biologics are not always effective and, for some patients, the relief can wear off over time, meaning they will need to be swapped to a new injection.

The drugs also weaken the immune system, raising the risk of allergic reactions and infections. But research shows many patients see improvements in their symptoms, often within weeks of starting treatment.

But even after diagnosis, some women are not offered biologics.

It took Beth Wilson a decade to get her diagnosis – and she is still fighting for treatment. The 26-year-old call centre worker from Newcastle began to experience hip and lower back pain at the age of 16.   

Yet, despite repeated trips to hospital and her GP, she was not offered help.

‘The pain was there all the time,’ says Beth. ‘But every few months I would get a terrible flare-up so bad I struggled to walk. I lost count of the amount of times I went to the hospital for help.

‘It began when I was a child, so at first I’d go with my mum. But no one seemed to want to help. At one point doctors suggested it might be arthritis but blood tests and scans didn’t show anything wrong.

‘When I was young I did a lot of acting and singing. I studied acting at university because I really wanted to pursue it as a career. But my flare-ups meant I couldn’t perform.’

Earlier this year she was again referred for an MRI scan, which finally showed inflammation on her spine.

However, her rheumatologist told her that her condition wasn’t severe enough to warrant biologic injections.

Beth adds: ‘My step-dad also has it really badly, to the point where his spine has fused, and the doctor told me I wouldn’t need the drugs until my condition was that bad.’

But experts say this is not the correct advice.

‘Everyone diagnosed with this condition should be offered treatment,’ says Prof Marzo-Ortega.

‘There’s no cure and the drugs won’t work for everyone, but so many people see a massive improvement in their quality of life on them.’

Clair says that her condition has improved since she began taking a biologic.

After unsuccessfully trying a low-dose of painkiller naltrexone – a treatment sometimes favoured by patients who want to avoid biologic side effects – she began the injections in January.

A recent MRI scan revealed that the inflammation around her spine has now significantly reduced.

Unfortunately, Clair says she still experiences pain. Experts say this is common among patients whose condition has been left untreated for a significant period.

The unmanaged pain can trigger what is known as a chronic pain cycle, where the body wrongly believes it is still injured and continues to send out pain signals to the brain.

Clair says that, had she been diagnosed and treated sooner, her severe pain could have been avoided.

‘I spend my life pushing through the pain,’ she says. ‘If I’d been offered these drugs sooner, I’m sure things would be different.

‘The problem is that this is a hidden disability and women like myself aren’t taken seriously. That needs to change.’

‘The problem is that this is a hidden disability and women like myself aren’t taken seriously. That needs to change.’

X-Factor star may be left disabled after 15-year diagnosis delay

It took 15 years for the NHS to diagnose singer-songwriter Talia Dean with axial spondyloarthritis.

Talia, pictured left, who in 2017 was a finalist on prime time talent show The X Factor, says her hip pain began when she was just 18. 

Talia, now 40, says the pain was so bad she would have to use crutches to get around – but even so, doctors continued to put her symptoms down to growing pains.

Over the years, Talia – who has performed with Queen guitarist Brian May – underwent multiple scans, a raft of tests and was seen by several rheumatologists.

However, no one was able to find the cause of her symptoms – which continued to worsen as she got older.

‘It was like someone had stabbed me,’ Talia said. ‘It was horrible and it never really went away. I always had a backache and always felt tired.’

It was not until Talia was 34 that scans revealed the bones in her spine had begun to fuse together. At the time she was told that, in the future, she will likely be unable to walk unaided due to the damage to her spine.

In 2021 Talia urged others with recurring back problems to be tested for axial spondyloarthritis.

‘I could forgive everybody that missed my diagnosis,’ she said. 

 ‘I could forgive them if it was a rare condition that’s hard to find, but it isn’t and I’m really angry about it because the more I research it the more I think, ‘‘Wow, every time it was staring you in the face.”’