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Women in UK waiting almost nine years for endometriosis diagnosis, study shows
Getting a diagnosis for endometriosis in the UK now takes almost a year longer than before the pandemic
Women in the UK are waiting nearly nine years for an endometriosis diagnosis, a new study has found.
The study by the charity Endometriosis UK revealed that getting a diagnosis for endometriosis in the UK now takes almost a year longer than before the pandemic.
The report showed that diagnosis times had significantly worsened over the last three years, increasing to an average of eight years and 10 months, an increase of 10 months since 2020.
This lengthy wait means a delay in accessing treatment, during which the disease may progress, leading to worsening physical symptoms and a risk of permanent organ damage.
“Taking almost nine years to get a diagnosis of endometriosis is unacceptable,” said Emma Cox, CEO of Endometriosis UK.
“Our finding that it now takes even longer to get a diagnosis of endometriosis must be a wake-up call to decision makers to stop minimising or ignoring the significant impact endometriosis can have on both physical and mental health.
“Now is the time to reverse the trend and make commitments to drive down diagnosis time for endometriosis and other menstrual health conditions.”
The research, based on a survey of 4,371 people who have received a diagnosis, found that 47 per cent of respondents had visited their GP 10 or more times with symptoms before being diagnosed, and 70 per cent had visited five times or more.
It showed that only 10 per cent of respondents reported that GPs mentioned they suspected endometriosis at either their first or second appointment where symptoms were discussed.
According to the report, more than half had visited A&E at least once and 17 per cent of those were referred to gynaecology at their first visit.
Around 78 per cent of people who later went on to receive a diagnosis of endometriosis had experienced one or more doctor telling them they were making a “fuss about nothing” or similar comments.
The report included examples of patients’ experiences, with many being told that their pain was “normal”. One woman said: “I was constantly dismissed, ignored and belittled by medical professionals telling me that my symptoms were simply due to stress and tiredness. I persevered for over 10 years desperate for help.”
Another said she had been told she was “being dramatic” after going to her GP as a teenager with painful periods. Another said: “A&E nurses told me that everyone has period pain so take paracetamol and go home.”
Endometriosis UK says, despite impacting 1.5 million across the UK, governments are failing to recognise the impact of endometriosis or allocate sufficient resources to diagnosing it.
The charity is calling on governments to commit a target of an average diagnosis time of a year or less by 2030 and urging NHS commissioners and providers to urgently reduce gynaecology waiting times.
In response to the report, Maria Caulfield, the minister for the women’s health strategy, said: “More must be done to improve women’s experiences of the healthcare system, and for those women suffering from endometriosis we have a long way to go. From getting an initial diagnosis to getting the right care and treatment, we must learn from this report.
“We launched our Women’s Health Strategy to do just this – listen to women. Endometriosis is a priority area within our strategy, so expect to see more in this space. In addition, we are rolling our women’s health hubs across the country to support more women with specialist care required with this condition.”
Ranee Thakar, president of the Royal College of Obstetricians and Gynaecologists (RCOG), added:“Endometriosis can have significant impacts on every aspect of women’s lives and timely diagnosis is crucial to ensuring that treatment and wider support can be in place to limit the progression of disease and manage symptoms.
“The barriers to timely diagnosis of endometriosis and other gynaecological health conditions are complex, but it is clear that more action is desperately needed.
“We need education and national communications campaigns to support women and girls to recognise their symptoms and feel confident seeking help. We need clinicians across the health service who listen to women and have the skills and expertise to diagnose and treat gynaecological conditions and we need investment in services to ensure that we have the right equipment and training for healthcare professionals to achieve timely diagnosis.”
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The Scottish government has launched a national review into whether NHS IVF access should be extended to single women.
The review will also consider whether wider access should be offered to couples who have children from previous relationships.
Health secretary Angela Constance said: “Access to NHS IVF treatment should be fair, timely and reflect the way people’s lives and families look today.”
Most single women are not currently eligible for NHS IVF treatment in Scotland.
Campaigners have welcomed the review.
Katie Rollings of Fertility Action said: “It’s an essential and long-awaited decision that will impact a huge number of people who are struggling to grow their families.
She said there is “no evidence” that having two parents rather than one determines whether a child will thrive.
She added: “What matters is whether a child is loved, safe, supported and has stable, positive relationships around them.”
Figures from the Human Fertilisation and Embryology Authority show Scotland is the only UK nation where NHS-funded IVF cycles outnumber privately funded cycles.
In 2024, more than 6,000 cycles of fertility treatment were carried out among more than 4,000 patients in Scotland. Both figures were slightly lower than the record highs recorded in 2022.
The past 20 years have also seen a rise in the number of same-sex female couples and single women receiving fertility treatment.
In 2024, 625 IVF cycles were carried out for women in same-sex couples in Scotland, with more than one third funded by the NHS.
There were 330 cycles involving single women, of which 50 were NHS-funded.
In England, single women can access IVF through the NHS, although eligibility varies according to the local health trust’s policy.
Current Scottish rules state that couples are eligible if they have been living in a stable relationship for two years and neither partner has been sterilised.
Couples where one partner already has a child can be eligible, but those where both partners have children from previous relationships are not.
Eligibility rules also require a body mass index above 18.5 and below 30, and state that couples must not smoke, drink alcohol or take drugs during treatment. The mother must be under 42.
The Scottish government said the review would also examine consistency of access to fertility preservation, including during cancer treatment, as well as reducing waiting times for donor eggs and sperm.
Same-sex female couples already have access to NHS IVF, but they can face long waits for donor eggs or sperm, as can heterosexual couples who require donor treatment.
The National Fertility Group will lead the review and make “costed, demand-modelled recommendations”, which are due to be published by early summer 2027.
The group will include fertility experts from Scotland’s four NHS-assisted conception units in Glasgow, Edinburgh, Aberdeen and Dundee.
Prof Sarah Martins Da Silva, an NHS consultant and chair of fertility medicine at Dundee University, said there were questions to be answered in a resource-stretched NHS.
“As a fertility specialist I’m never going to be disappointed if the criteria is widened,” she said.
“But with single people, as an NHS clinician looking at the competing demands we have, I’d ask the question about whether being single is a health condition that needs to be funded.”
Da Silva said NHS waiting lists were full of couples who require donated eggs or sperm because of medical conditions including cancer and could face longer waits.
“It’s slightly a disservice to them,” she said.
“There would need to be a real investment and resource without making everybody wait an extraordinary long time.
“With the current financial environment we work in, if you’re talking about new money, where would that come from?”
She said she would welcome changes that encouraged more people to donate eggs or sperm and questioned whether arguments about children needing two parents were necessarily relevant to the debate.
“On the one hand bringing up a child is quite an expensive process, and if you don’t have that support, it can be very difficult.
“But on the other hand, many people start off as a couple and divorce.”
Da Silva also welcomed plans for the review to consider eligibility for couples who already have children, describing the move as “fantastic”.
The FDA has granted accelerated approval to AstraZeneca drug Etcamah for certain adults with advanced breast cancer carrying an ESR1 mutation.
Etcamah, also known as camizestrant, was approved in combination with a CDK4/6 inhibitor, either abemaciclib, palbociclib or ribociclib.
The treatment is for adults with hormone receptor-positive, HER2-negative, locally advanced or metastatic breast cancer when an estrogen receptor-1 (ESR1) mutation is detected during aromatase inhibitor and CDK4/6 inhibitor therapy using an FDA-authorised test.
ESR1 mutations are acquired resistance mutations that tumours may develop during treatment with aromatase inhibitors, a type of endocrine therapy commonly used as a front-line treatment for locally advanced or metastatic breast cancer.
Fewer than 5 per cent of patients have the mutation when HR-positive metastatic breast cancer is diagnosed, according to the FDA. After disease progression on an aromatase inhibitor, nearly 40 per cent have the mutation.
Acting FDA commissioner Kyle Diamantas said: “Women living with metastatic breast cancer face an uphill battle as their tumors continuously evolve to escape treatment.
“We owe them every weapon in our arsenal.
“Today’s approval delivers a win to these patients by granting them a targeted therapy designed specifically to overcome resistance, giving them more time before their disease progresses.”
The accelerated approval programme allows earlier approval of drugs that treat serious conditions and fill an unmet medical need based on surrogate or intermediate endpoints.
For Etcamah, approval was based on how long patients lived without their disease worsening, measured from when the resistance mutation was first detected in their blood.
The FDA said it has not yet been confirmed whether intervening when the mutation is detected, rather than waiting until disease progression is confirmed, results in a clinically meaningful benefit. Confirmatory studies are therefore required to verify and describe clinical benefit.
Angelo de Claro, director of the FDA’s Oncology Center of Excellence, said: “I commend both the FDA and the sponsor for their commitment to advancing cancer care and securing this accelerated approval.
“This marks the first FDA approval of a cancer therapy guided by the detection of a resistance mutation in circulating tumor DNA (ctDNA) before imaging tests show that the disease is progressing.
“But additional evidence is needed to confirm clinical benefit.”
Circulating tumour DNA, or ctDNA, consists of small pieces of tumour DNA released into the blood and can allow earlier molecular detection of resistance mutations.
The FDA also authorised the Guardant360 CDx assay as a companion diagnostic to identify patients with breast cancer who have ESR1 mutations for treatment with camizestrant.
Efficacy was assessed in a clinical trial comparing a switch to Etcamah plus a CDK4/6 inhibitor with continued treatment using an aromatase inhibitor plus a CDK4/6 inhibitor.
Estimated median progression-free survival was 16 months in the Etcamah group, compared with 9.2 months in the aromatase inhibitor group.
Etcamah’s prescribing information includes a boxed warning about the risk of irregular heart rhythm when taken with certain other medicines. It also includes warnings about an abnormally slow heart rate and potential harm to an unborn baby.
The FDA convened its Oncologic Drugs Advisory Committee for the application on 30 April 2026.
Entrepreneur
Last chance to save on Women’s Health Week and Women’s Sport Summit: Early Bird pricing ends 11 September
Early bird pricing for W Group’s two flagship October summits – Women’s Health Week Europe 2026 and Women’s Sport Summit Europe 2026 – closes on 11 September.
Both events take place at Emirates Stadium, London, bringing together founders, investors, corporates, and industry leaders shaping the future of women’s health and sport.
Women’s Health Week Europe 2026
7-8 October | Emirates Stadium, London
This year’s edition will be Women’s Health Week Europe biggest one yet: with 700+ attendees, 80+ speakers, and 20+ sponsors, it will also feature two stages – a Global Stage covering market trends and policy, and a Scale Stage focused on company-level growth and commercialisation. WHW takes place across two days of content, business matchmaking, and dealmaking.
Agenda highlights include:
- Where Capital Flows: Funding Trends in Women’s Health – with Merete Clausen (EIF), Ekaterina Gianelli (Calm/Storm), Henriette Hessen (Verdane), Jemma Day (British Business Bank), Ravit Warsha Dor (Telus Global Ventures), Tim Davis (LSEG)
- Six Feet Under-funded: Surviving the Valley of Death in Women’s Health – with Patric Stenberg (Gesynta Pharma), Valentina Milanova (Daye), Amber Vodegel (28x)
- The Women’s Health Label – Gift or Curse? · Live Debate – with Juan Camilo Arjona Ferreira (organon), Marissa Fayer (DeepLook Medical), Christian Lautner (Heal Capital), Annie Theriault (CBIV), Ida Tin (Clue)
- Passport to Scale: Taking Your Women’s Health Business Global – with Vanessa Carpenter (Femtech Across Borders), Annie Theriault (CBIV), Victorine Lançon (Daya Ventures), Dr Mridula Pore (Peppy)
Early bird pricing (ends 11 September):
| Ticket type | Early bird | Standard |
| Startups, Scaleups, Investors, Non-Profits, Government | £599 + VAT | £699 + VAT |
| Corporates, Payors & Providers | £1,799 + VAT | £1,999 + VAT |
| Service Providers & Consultants | £3,299 + VAT | £3,499 + VAT |
Register for Women’s Health Week Europe | See the full agenda for WHW
Women’s Sport Summit Europe 2026
6 October | Emirates Stadium, London
The first-ever Women’s Sport Summit expands W Group’s expertise in connecting key decision-makers to the sports industry.
WSS brings together rights holders, brands, investors, athletes, and media to accelerate commercial growth across the sector.
Agenda highlights include:
- From capital to crowd: the women’s sport cycle at scale – with Omar Shaikh (Arsenal FC), Nicole McWilliams (Google), Kerstin Lutz (Mercury13), Jo Currie (BBC Sport)
- Women’s sport through the investor lens: what gets funded – and why – Hugo Sever (APEX Capital)
- Rethinking ROI: what are we measuring that doesn’t actually matter? – Fi Watherston (Metro Bank), Silvia Keiser (Billie Jean King Cup), Gabriel Akin-Odujobi (Crux Football), Tammy Parlour (WST)
- Beyond the 90 minutes: matchday as a commercial product, not just a fixture – Maggie Murphy (Aston Villa Women FC), Sam Feasey (Diageo/Guinness), Molly Miller (OneFootball), Megan Feringa (The Athletic/The New York Times)
Early bird pricing (ends 11 September):
| Ticket type | Early bird | Standard |
| General Pass | £299 + VAT | £399 + VAT |
| Service Providers & Consultants | £1,799 + VAT | £1,999 + VAT |
Register for Women’s Sport Summit Europe | See the full agenda for WSS
Attending both events?
For group tickets or to attend both summits this October, contact Callum, W Group’s Client Success Lead, at [email protected].
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