Every month since her periods started at the age of 14, Jenni Johnson would suffer such severe pain she would cry out in agony. The pain would also shoot down her leg, leaving her struggling to walk.
Yet despite this, and the heavy monthly bleeding she suffered, it would be nearly ten years before a scan finally revealed the cause – endometriosis, a condition affecting 1.5million women in the UK.
Endometriosis occurs when tissue similar to the lining of the womb grows elsewhere in the body, causing internal bleeding and pain.
During those long years, Jenni, a former healthcare worker from Sutton-in-Ashfield, Nottinghamshire, was offered no treatment other than contraception.
It wasn’t until she was 32 that Jenni was finally referred to a gynaecologist, who said she needed urgent surgery to remove the endometriosis – which by then had spread throughout her abdomen, ovaries and bladder.
It wasn’t until she was 32 that Jenni Johnson was finally referred to a gynaecologist, who said she needed urgent surgery to remove the endometriosis
It was also around her sciatic nerve, the large nerve that runs from the lower back and down the leg, explaining why her leg had been failing her.
Jenni’s delayed diagnosis has left her having to use a wheelchair – and unable to conceive naturally.
Indeed while endometriosis is often seen as ‘just’ a problem around periods, it can have a widespread impact on women’s physical and mental wellbeing, exacerbated by late diagnosis.
And yet caught early, and with the right treatment, all of this can be avoided.
Contrast Jenni’s story with that of Natalie Greenwood, a French and Spanish teacher at a secondary school in Calderdale, West Yorkshire.
Natalie was 22 when her GP said her bladder pain ‘sounded like’ endometriosis – but advised her to return when she’d tried to have children.
She asked for a second opinion, and within six months had a laparoscopy, where a small camera is passed through the abdomen to look inside the pelvis. This revealed that her endometriosis had already ‘glued’ her womb to her bladder.
‘If I’d done what the GP said, I probably wouldn’t have my son Alfie [now five],’ says Natalie, 36.
Natalie Greenwood was 22 when her GP said her bladder pain ‘sounded like’ endometriosis – but advised her to return when she’d tried to have children
The shocking scale of undiagnosed endometriosis was revealed in a recent report by the charity Endometriosis UK, which showed that Jenni’s experience is far from unique – and the situation is getting worse.
The time from first symptoms to diagnosis increased from eight years in 2020 to nine years and four months in 2025, according to the survey of 3,000 women – 39 per cent of them saw their GP at least ten times before endometriosis was even suspected.
As many as 82 per cent – a jump from 69 per cent in 2023 – had their symptoms dismissed by doctors, with many told they were ‘making a fuss about nothing’ or that their pain was normal.
Symptoms can begin at puberty. At school an ‘embarrassed and mortified’ Jenni would leak blood onto her chair and was regularly sent home because of the intense pain.
Despite Jenni’s parents rushing her to A&E every time her bleeding was so heavy she blacked out, her symptoms were dismissed by doctors as ‘just period pain’ and she was told she’d ‘eventually get used to it,’ she recalls.
Her GP said she was ‘just a heavy bleeder’ and should take paracetamol to help sleep it off.
In fact more than half of girls later diagnosed with endometriosis are told they’re ‘too young’ to have the condition and their symptoms are similarly dismissed, according to a survey last year of women under 25 by Endometriosis UK.
The shocking scale of undiagnosed endometriosis was revealed in a recent report by the charity Endometriosis UK
The legacy of missed treatment opportunities can extend far into adult life: in the same survey, 55 per cent of young women reported that their condition had damaged their career and 94 per cent said it affected their mental health.
Delays in diagnosis stem from inadequate doctors’ training at medical school, says Emma Cox, the charity’s chief executive. ‘Many have no or very limited education around endometriosis and menstrual health conditions,’ she adds.
Yet early diagnosis is critical – left untreated, the more the tissue can spread into other parts of the body, explains Dr Jeffrey Ahmed, a consultant gynaecologist and lead clinician for endometriosis at the Chelsea and Westminster Hospital in London.
Tissue can eventually wrap itself around organs, gluing them together. In severe cases, it can invade the bowel wall, causing such extensive damage that a woman needs a permanent colostomy bag.
The scar tissue can also block or damage fallopian tubes and ovaries, raising the risk of infertility.
Delays take a major toll on mental health, adds Andrew Horne, a professor of gynaecology and reproductive sciences at the University of Edinburgh.
‘Years of uncontrolled pain increase depression and anxiety – leading to social isolation, strained relationships, reduced fertility and, for some, the loss of their job,’ he says.
Jenni was told the condition meant she would never get pregnant and the clinic refused to give her IVF, saying it would not be successful
Dr Ahmed adds: ‘It’s now recognised in law as a disability – my patients know how disabling the condition can be.’
Yet more women than ever are waiting for treatment. A report into the menstrual health of girls and young women, published earlier this year by a cross-party group of MPs, found that in England more than half a million women, many with endometriosis, were on gynaecology waiting lists, a third more than in 2021.
The committee concluded this was partly driven by ‘medical misogyny’ and a healthcare system that expected them to ‘suck it up’ as a normal part of being female.
It wasn’t until Jenni tried for a baby aged 23 – and failed to conceive after a year – that she was finally diagnosed after an internal ultrasound scan at an NHS fertility clinic in 2013.
She was told the condition meant she would never get pregnant and the clinic refused to give her IVF, saying it would not be successful.
In fact, 70 per cent of women with endometriosis do become pregnant naturally, according to Endometriosis UK. (Under updated official guidelines, women trying to conceive should be given IVF if needed. Yet it’s not uncommon to be refused treatment and told to ‘try for two years’, says Emma Cox.)
Desperate to be a mum, Jenni was devastated. ‘I burst into tears leaving the hospital,’ she says.
She returned to her GP, who treated her symptoms with different types of contraception – including the contraceptive implant (a small rod placed under the skin of the arm to release hormones and keep ovulation switched off).
These worked for a few months but the pain always returned, eventually becoming so severe she was signed off on long-term sick leave in 2021.
Five years later, returning again to her doctor yet again, she happened to see a locum GP who, studying her notes, said she should have been referred when the endometriosis was first discovered.
Jenni, then 32, saw a gynaecologist, who placed her on an urgent list for surgery.
There are only 68 NHS specialist endometriosis centres in England – and just one in five diagnosed women has ever been seen at one
However she was not referred to a specialist endometriosis centre. Instead, her operation was carried out by a general gynaecologist at her local hospital.
This matters because specialist centres have multidisciplinary teams – gynaecological, bowel and urology surgeons trained in the complex techniques needed to remove endometriosis without damaging surrounding organs such as the bowel and bladder, says Dr Ahmed.
The evidence shows that women having surgery performed by dedicated specialists have a lower complication rate and are half as likely to require repeat surgery than under a general gynaecologist, he adds.
Yet there are only 68 NHS specialist endometriosis centres in England – and just one in five diagnosed women has ever been seen at one, according to the All-Party Parliamentary Group on Endometriosis. This is despite updated guidance stating that women with suspected endometriosis affecting the bowel or bladder should be quickly referred to one.
Jenni’s operation revealed the disease had spread to her bladder, uterus, ovaries and sciatic nerve.
Yet as the surgeons weren’t specialists, they couldn’t remove the endometriosis tissue deep in the pelvis – and around the sciatic nerve.
Endometriosis on the sciatic nerve, which affects one in 1,000 of women with the condition, can be easily missed by a generalist, says Dr Ahmed.
‘It can mimic sciatica and other common lower back pains, so is often dismissed or managed with physiotherapy and painkillers in primary care,’ he explains.
Yet untreated, the nerve is progressively destroyed, and can lead to permanent damage.
Jenni now needs crutches to walk short distances and wheelchairs for long distances. ‘My leg can go underneath me without warning,’ she says.
The bleeding returned within a month of her operation – she then had to wait another two years to see another gynaecologist.
This isn’t uncommon because the condition is treated by the NHS as a series of separate, unconnected episodes rather than a chronic condition, says Emma Cox – so if symptoms return a patient must start again from scratch, asking her GP for a new referral.
When Jenni eventually saw another gynaecologist at 34, she underwent a hysterectomy.
This did, finally, stop the heavy bleeding – but the disease had spread to her bowel and this tissue still bleeds monthly, causing pain.
Natalie now takes a daily hormone tablet, Ryeqo, which suppresses the hormones driving endometriosis. But every few years she needs surgery to cut away new endometriosis growth.
Yet the disregard that patients can experience was highlighted when, at her third operation, in 2021, the general gynaecologist even said the procedure was only carried out to keep her happy: yet it revealed more endometriosis and scarring.
Thanks to her persistence, she now sees an endometriosis specialist. Her treatment regimen – medication to slow new growth and the surgical removal of excess tissue – means she stands a good chance of conceiving again.
Natalie now runs a local endometriosis support group, with 232 members – many of whom had been turned away by their GP or a general gynaecologist.
Meanwhile, Jenni, 38, is still waiting for a referral to a specialist centre and her symptoms continue to worsen.
She says: ‘It’s taken away my independence, my work, my social life, my mental health. It’s not fair that women with endometriosis are not taken seriously.’
