News
Endometriosis: Why it takes an average of 8 Years to diagnose — and how to get answers faster
Article produced in association with Spital Clinic
Around 1.5 million women in the UK are living with endometriosis — and behind that number is a shared experience that rarely makes headlines.
According to NHS guidance on endometriosis, it is one of the most common gynaecological conditions in the country. And yet for most of the women it affects, getting a diagnosis took years.
The path to that diagnosis is rarely straightforward. It is long, often lonely, and filled with appointments where very real pain is explained away or missed entirely.
The Scale of the Diagnosis Delay
The Endometriosis UK 2024 Impact Report, drawn from responses by 4,371 women with confirmed endometriosis, puts the average time from first experiencing symptoms to receiving a diagnosis at 8 years and 10 months.
Despite growing awareness and repeated calls from clinicians for earlier investigation, that figure has barely shifted in a decade.
The numbers behind that average are striking.
The same report found that 47 per cent of those women had visited their GP ten or more times before getting a diagnosis, and 78 per cent said they felt dismissed when they first raised their symptoms — up from 69 per cent in the previous survey.
That isn’t a rounding error. It is the lived reality of most women with endometriosis.
Endometriosis happens when tissue similar to the uterine lining grows outside the uterus — on the ovaries, fallopian tubes, bowel, bladder and beyond.
Because it responds to the same hormonal cycle as the uterus, it causes recurring inflammation and scarring that cannot resolve on its own. The longer it goes undiagnosed, the more opportunity there is for it to progress.
Why Diagnosis Takes So Long
Part of the problem is that there is no simple test for endometriosis. Its symptoms — painful periods, chronic pelvic pain, pain during sex, bowel and bladder problems, and persistent fatigue — overlap with conditions that GPs see far more often.
IBS and painful periods are among the most frequent misdiagnoses before endometriosis is finally considered.
There is no blood test that confirms it.
NICE guidance acknowledges something that many women already know from experience: there is a long-standing tendency — both culturally and in clinical practice — to treat severe period pain as a normal part of female life.
When pain that disrupts daily function is met with reassurance rather than investigation, the referral that might eventually lead to a diagnosis simply does not happen.
That is where much of the delay originates.
For women whose symptoms have been raised repeatedly without investigation, a specialist gynaecological assessment — through NHS referral or through a private gynaecology consultation — tends to move things forward more quickly than further appointments at GP level.
What NICE NG73 Now Recommends
In November 2024, NICE NG73 — the updated endometriosis guideline — set out a clearer diagnostic pathway: defined criteria for when to investigate, when to refer, and what tests should happen first.
The guideline recommends transvaginal ultrasound as part of the initial investigation for suspected endometriosis.
Crucially — and this is worth knowing — a normal scan does not rule out endometriosis.
Many women are told their results were clear and assume that means the matter is settled. It does not.
A scan creates objective evidence that strengthens the case for specialist referral — something a physical examination alone often cannot do.
It can be arranged through an NHS referral or through a private transvaginal ultrasound, and specialist assessment is recommended where symptoms continue regardless of what the scan shows.
A normal scan is not a closed door.
The definitive test for endometriosis remains laparoscopy — a keyhole surgical procedure under general anaesthetic that allows a surgeon to see endometrial deposits directly and, where possible, treat them at the same time.
NG73 supports laparoscopy as the appropriate next step when non-invasive assessment does not provide a clear answer. Knowing that this option exists — and that it is appropriate to ask for it — makes a real difference.
What to Do if Your Symptoms Are Not Being Investigated
The most useful thing to do right now is start documenting. Write down dates, severity, how your symptoms relate to your cycle, and the specific ways they are affecting your life — across at least two or three full cycles.
A written record is far harder to dismiss than a verbal account given at a single appointment.
A symptom diary is the single most useful document a woman can bring to a GP appointment.
When you ask for a referral, be specific — ask for a gynaecologist with a specialist interest in endometriosis, not a general gynaecology appointment.
Under NHS England’s patient choice framework, you have the right to request referral to a named provider, including specialist endometriosis centres.
If a GP declines to refer you despite a persistent symptom history, requesting a second opinion from a colleague within the same practice is a reasonable and available step.
Endometriosis affects around 1 in 10 women of reproductive age, according to NHS guidance. That is not a rare condition — and yet the gap between how common it is and how promptly it gets diagnosed remains enormous.
NICE NG73 sets a clearer standard for what investigation should look like, but guidelines change slowly and practice can lag behind.
The women who tend to move through the system fastest are the ones who know what they are entitled to ask for: a transvaginal ultrasound, onward specialist referral, and the understanding that a normal scan is not the end of the road.
If this applies to you, book a consultation with a consultant gynaecologist to begin a structured assessment.
This article is produced for informational purposes only and does not constitute medical advice, diagnosis or treatment. Clinical guidance referenced reflects published NHS and NICE standards as at March 2026. Individual circumstances vary; readers are advised to consult a qualified healthcare professional before acting on any information in this article. This piece was produced in association with Spital Clinic, which provided background clinical information for editorial purposes. Hyperlinks to external sources are included for reference only and do not represent an endorsement of any product, service or organisation.
Supermarket loyalty card data suggests more than a quarter of women buying menstrual products also buy pain relief at the same time.
The findings also suggest women in lower-income areas are significantly less likely to do so, pointing to disparities in access to over-the-counter pain relief across England.
The study was led by Dr Victoria Sivill of the University of Bristol and colleagues.
The authors said: “The study highlights the need for greater awareness and policy interventions to address the high prevalence of menstrual pain as well as socioeconomic dimensions of menstrual pain.
“Public health initiatives should incorporate menstrual pain relief as part of broader efforts to improve health equity.”
Researchers analysed anonymised loyalty card data from a major UK health and beauty retailer, covering 211m transactions by 3.4m people between 2006 and 2015.
The study examined how often shoppers bought menstrual products and pain relief in the same transaction, and compared this with a customer’s usual rate of buying pain relief.
It found that 26.7 per cent of customers who bought menstrual products also bought pain relief at the same time.
These customers were nearly four times more likely to buy pain relief when buying menstrual products than on other shopping trips.
As a check on the approach, researchers found the most common interval between consecutive menstrual product purchases was exactly 28 days, consistent with the average menstrual cycle.
Menstrual pain is common and can affect daily activities, including school and work attendance.
Regional income was the strongest predictor of menstrual pain purchases.
Customers in the lowest-income areas were 32 per cent less likely to buy pain relief at the same time as menstrual products than those in the highest-income areas.
The authors said lower rates of pain relief purchases in deprived areas are likely to reflect an inability to afford over-the-counter medication rather than lower rates of menstrual pain itself.
Co-author Dr James Goulding said: “It is wonderful that smart data research in the UK is able to bring issues which may have once been overlooked in scientific settings, such as the sheer scale and impact of menstrual pain, to light. This is well overdue.
Co-author Dr Anya Skatova said: “Like many women, I was aware of how common menstrual pain is, but the scale of painkiller purchases alongside menstrual products was still striking.
“Using shopping data, we can see just how widespread the need for pain relief really is. This kind of evidence helps make menstrual pain visible at a population level and provides a strong foundation for systemic change in how it is recognised, treated, and prioritised in public health.”
Women are still being failed by menopause care despite a surge in online advice, with experts saying symptoms are too often minimised or dismissed.
The researchers exposed a gap between the surge of menopause information available online and the quality of medical care women receive.
A team of anthropologists and psychologists explored the physical and emotional toll of menopause, including its impact on work and personal lives, through interviews with 60 women aged 45 to 61 between March and June 2021.
The findings were published in a new book, We Need to Talk About Menopause.
The interviews showed how women continue to “needlessly suffer” as they sort through misinformation from influencers, celebrities and so-called experts.
The authors said: “You would think in an age where humans are developing commercial space flight, self-driving cars, and AI personal assistants who can project movies onto the palm of your hand, we would understand more about menopause, something a little over half of the population is guaranteed to experience in their lives.”
The interviews revealed wide variation in women’s experiences of doctors.
Some felt they could have an open dialogue, while others said they were “shut down”, including being told they were too young for menopause.
One woman said she bled heavily for a year before she was taken seriously.
The authors said menopause is still poorly understood, with disagreement over whether it should be seen as a medical condition or a natural part of ageing.
There are more than 100 recognised symptoms, although some women experience none.
Among those interviewed, 78 per cent reported weight gain and redistribution, particularly around the belly area, which was resistant to diet and exercise.
Fifty-eight per cent experienced mood disturbances including anxiety, depression, irritability and unprecedented levels of rage.
Many women said they were blindsided by symptoms they had never known existed.
One participant said she only realised rage was a menopause symptom after seeing it mentioned in a television commercial.
Women also described severe memory problems and brain fog that colleagues mistook for incompetence, leading successful professionals to question their abilities at the peak of their careers.
Brain fog can include problems with concentration, memory and clear thinking.
According to Statistics Canada, 70 per cent of women turn to the internet as their primary source of menopause information.
The authors said this information vacuum has spawned a £14.7bn global “meno-tech” industry, with influencers, celebrities and telehealth companies offering products ranging from £98 creams to unnecessary blood tests.
They said: “The growth of interest in menopause has also been accompanied by a wave of unsubstantiated information.
“Many websites market expensive creams, supplements, and weight-loss schemes that promise to keep women youthful and attractive, with little evidence to support their claims.
“Reliable, accessible information about menopause and perimenopause is still lacking. Despite increased attention to the importance of physician training and the search for menopause specialists, the medical profession as a whole continues to provide limited support in this area.”
The authors also highlighted the effect of menopause in the workplace.
The House of Commons Women and Equalities Committee has warned that Britain is “haemorrhaging talent” because of menopause, with 14 million workdays lost each year, according to the Office for National Statistics.
Despite this, studies have shown 80 per cent of UK employers have yet to implement proper support measures for menopausal women.
Some women said simple workplace adjustments made a significant difference.
The Women and Equalities Committee (WEC) has warned against “financial half measures” on women’s health as the government published its response to the report.
Ministers launched the renewed Women’s Health Strategy in April after the committee’s March report concluded it was not convinced that the menstrual and gynaecological needs of young women and girls had been sufficiently prioritised in wider healthcare reforms.
It followed the committee’s 2024 “medical misogyny” report, which found women with painful reproductive health conditions such as endometriosis, adenomyosis and heavy menstrual bleeding were frequently finding their symptoms “normalised” and their “pain dismissed” when seeking help.
In both reports, MPs called on the government to recognise the benefits of increased investment in early diagnosis and treatment of women’s reproductive health conditions and provide additional funding needed to transform the support available to millions of women.
In its response, published on 26 May as a command paper, the Department of Health and Social Care outlined action on reducing gynae waiting times, ensuring procedures are conducted with women’s full consent and adequate pain relief, and improving access to contraception for menstrual healthcare in line with the committee’s recommendations.
It said: “The government agrees with the committee’s overarching findings and recommendations for improving women’s health outcomes and experiences.
“We acknowledge the impact that menstrual health conditions can have on women’s lives, relationships, and participation in education and the workforce.
“We recognise that more needs to be done to support women with menstrual health conditions, particularly around listening to women, improving information and education, and enhancing patient experience.”
However, there was no commitment to increase school nurse provision, no measurable actions and targets on countering online misinformation, no new commitments to end inappropriate censorship of women’s online health content, and no further initiatives on tackling racial discrimination or understanding the menstrual wellbeing needs of young disabled and Deaf women.
The response comes after analysis by The Times suggested the government is allocating 60 per cent more funding to its men’s health strategy than to its renewed strategy for women’s health.
Sarah Owen, chair of the Women and Equalities Committee and Labour MP, said: “WEC’s 2024 ‘medical misogyny’ report warned 18 months ago of women in unnecessary pain and undiagnosed for years and called on the Government to recognise the benefits of increased investment in early diagnosis and treatment.
“Our follow up report this March cautioned girls’ and women’s health are not being sufficiently prioritised in system-wide NHS reforms, while initiatives which have proven to be successful in reducing waiting lists and improving women’s healthcare access, such as women’s health hubs, risked being scaled back or discontinued.
“While it’s welcome to see a focus on tackling ‘medical misogyny’ in April’s renewed Women’s Health Strategy and an emphasis on women’s voices being heard, this must be backed by adequate funding, not financial half measures, particularly when compared to men’s health.
“Significant questions remain following today’s response publication over the adequacy of investment being provided, including for workforce training, menstrual health education in schools, research and additional ring-fenced funding for women’s health hubs to deliver services within the emerging neighbourhood health framework.
“There are both opportunities and risks when it comes to increasing use of technology in women’s healthcare.
“As the Committee’s report set out, social media companies should be held to account for inappropriate and disgraceful ‘shadow banning’ censorship of important women’s health content and there should be a rigorous approach to tackling the risks from ineffective, unsafe and exploitative for-profit FemTech apps.
“The Government should take the problem of ‘shadow banning’ more seriously.
“A strategy which does not fully address the concerns set out in WEC’s report, alongside measurable actions and timescales, will only scratch the surface of the issues facing women’s health.
“WEC will keep a close eye on progress and continue to push for long overdue tangible change for women and girls.”
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