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.
By Women’s Health Week
With four weeks to go until Women’s Health Week USA, the excitement is ramping up!
The final early bird pricing closes this Friday, the full speaker lineup is confirmed, and a record number of pitch applications signals the depth of innovation now moving through the sector as we enter the Era of Scale.
Women’s Health Week USA takes place May 13-14 at the New York Academy of Medicine in New York City, bringing together 600+ senior decision makers spanning investors, founders, multinationals, payers, providers and policymakers around one shared agenda: taking women’s health from growth to scale.
Early bird tickets are available until midnight on Friday, April 17.
Book by then to save up to $600 on your place
The Full Speaker Lineup is Confirmed
The full speaker lineup has finally been confirmed, with 80+ voices spanning investment, innovation, policy, medtech and pharma.
The programme reflects the event’s 2026 theme, The Era of Scale, moving beyond early validation into the harder work of institutionalising women’s health as a category.
Confirmed speakers include Kate Ryder (Maven Clinic), Mallika Mundkur (FDA), Melanie Newman (Planned Parenthood), Nichole Young-Lin (Google), Jill Angelo (OURA), David Stern (Kindbody) and Tammy Sun (Carrot Fertility), alongside representation from the NYSE, ARPA-H, the World Health Organization, Samsung Next, Novo Holdings and more.
170 Pitch Applications and Counting
The Women’s Health Week USA Innovation Showcase received a record 170 applications ahead of its April 10 close, the highest number in the event’s history.
The volume reflects the growing depth of innovation in the sector, but it was the quality of submissions that stood out, with companies across Medical Devices & Therapeutics and Consumer & Tech bringing genuinely differentiated solutions to conditions that have been underserved for decades.
The selected companies will get the chance to pitch on the mainstage at the New York Academy of Medicine in front of the full audience of 600+ investors, corporates, innovators and strategic partners.
Results will be announced next week.
Register your interest to find out who makes the WHW USA Innovator Class of 2026
NYSE Partnership: A Quick Recap
For those who missed our announcement on Femtech World last week, the New York Stock Exchange is the Official Exchange Partner of Women’s Health Week USA 2026.
On the morning of May 13, WHW will feature in the NYSE Market Update, reaching approximately 200 million viewers.
Women’s Health Week will also light up the North Star Billboard in Times Square for a full week around the event, with live and taped interviews distributed across NYSE Live and Taking Stock.
It remains one of the most significant institutional endorsements the women’s health sector has seen.
Early Bird Pricing Closes This Friday
Tickets increase by up to $600 after midnight on Friday, April 17. For anyone with May 13-14 in their calendar, this week is the window to move.
You have until Friday to nominate your femtech company of the year.
The award is one of 10 featuring at Femtech World’s third annual awards event, which attracts entries from across the UK, EU and Europe.
The Company of the Year Award is for companies that have demonstrated exceptional leadership in tackling women’s health needs through groundbreaking products, services or platforms that are shaping the future of global femtech.
If your company is driving innovation, impact and growth in this space, this award was made for you.
About the sponsor: Femovate
The category is backed by Femovate, the global femtech incubator using design to fuel innovation across every stage of a woman’s health journey, from proactive prevention through to personalised treatment.
Femovate has invested over US$2 million in design capital, working side-by-side with founding teams to bring market-ready solutions to life.
The startups it supports have collectively raised US$120 million, launched 30 products, and secured seven FDA clearances.
Why enter?
The Femtech World Awards are free to enter.
Winners and shortlisted companies receive extensive coverage across all Femtech World platforms.
Winners will also receive a trophy and the opportunity to be featured in an interview for the publication.
Find out more about the Femtech World Award and enter here by 4pm BST on Friday 17.
Women with osteoporosis may be more likely to carry a gene linked to Alzheimer’s, according to new research.
Scientists found that APOE4, the most common genetic risk factor for Alzheimer’s, can weaken bone quality in women, even when standard scans appear normal.
The study, carried out by researchers at the Buck Institute for Research on Ageing in California, US, and UC San Francisco, suggests the gene may damage bone at a microscopic level long before any visible signs.
These changes can emerge as early as midlife and remain invisible to routine imaging tests used to assess bone strength.
The findings suggest a link between Alzheimer’s risk and skeletal health and could help pave the way for earlier detection of both conditions.
Professor Birgit Schilling, a senior author of the study, said: “What makes this finding so striking is that bone quality is being compromised at a molecular level that a standard bone scan simply will not catch.
“APOE4 is quietly disrupting the very cells responsible for keeping bone strong – and it is doing this specifically in females, which mirrors what we see with Alzheimer’s disease risk.”
Doctors have long observed that people with Alzheimer’s suffer higher rates of bone fractures, while osteoporosis in women is known to be one of the earliest predictors of the disease.
Now scientists believe they may have uncovered why.
Researchers led by Dr Charles Schurman carried out a detailed analysis of proteins in aged mouse bone and found that tissue was unusually rich in molecules linked to neurological disease, including those associated with Alzheimer’s.
In particular, long-lived bone cells known as osteocytes showed elevated levels of APOE, with levels twice as high in older female mice compared with younger or male animals.
Further experiments using genetically modified mice revealed that APOE4 had a strong and sex-specific impact on both bone and brain tissue.
The disruption at the protein level was even greater in bone than in the brain.
However, the bone structure itself appeared completely normal under scans.
Instead, the gene interfered with a key maintenance process inside bone cells, preventing them from repairing microscopic channels that keep bones strong and resilient.
When this process breaks down, bones become more fragile even if they look healthy on standard imaging.
These results suggest bone cells could potentially act as early biological warning signs of cognitive decline in women carrying APOE4.
Professor Lisa Ellerby, another senior author, said: “We think targeting these cells may open a new front in preserving bone quality in this population.”
Experts say the findings highlight the need to view the body as an interconnected system rather than treating diseases in isolation.
Dementia, of which Alzheimer’s is the most common form, remains one of the UK’s biggest health challenges.
Around 900,000 people are currently living with the condition, a figure expected to rise to 1.6 million by 2040.
It is already the leading cause of death, responsible for more than 74,000 deaths each year.
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