The 2026 Endometriosis Report: Why Are We Moving Backward?

New data reveals we may be moving backwards on endometriosis diagnosis and care. Here’s what the 2026 report shows—and why women are still being dismissed.

The wait is over, but for millions, the wait continues. The 2026 Endometriosis UK Report has officially been released, and the findings are a sobering wake-up call for healthcare providers and policymakers alike.

At a time when medical technology is advancing faster than ever, the reality of living with endometriosis in the UK is becoming increasingly difficult. Instead of closing the gap, the data shows we are drifting further away from timely care.

Why This Report Matters

Endometriosis UK’s 2026 State of Endometriosis Care in the UK report offers an invaluable look at the lived experience using the data from 3,075 respondents who had received a diagnosis of endometriosis from a healthcare practitioner in the UK since 2015. It provides one of the most comprehensive insights into diagnosis times, standards of care, and real-world patient outcomes ever recorded.

As the UK’s leading charity for the condition, Endometriosis UK serves as the primary advocate for the “1 in 10.” They provide vital support services, reliable information, and a community for those suffering, while campaigning relentlessly for government policy changes and better NHS clinical standards. Their goal is simple but ambitious: to ensure that everyone with endometriosis has the right to a timely diagnosis and high-quality treatment.

The Numbers: A Downward Spiral

The most startling takeaway from the 2025-2026 data is the “Trend Line of Delay.” We are no longer just stagnant; we are moving in the wrong direction.

The Diagnosis Gap

The average time from the first GP visit to an endometriosis diagnosis in the UK overall has climbed to 9 years and 4 months. To put that in perspective:

This isn’t just a statistic; it represents nearly a decade of someone’s life spent in limbo. For ethnically diverse communities, the situation is even more dire, with an average diagnosis time of 11 years – nearly two years longer than the national average.

The Postcode Lottery

Where you live in the UK significantly impacts how quickly you receive an endometriosis treatment plan.

What Does Endometriosis Feel Like?

Endometriosis is a chronic, often debilitating condition affecting 1 in 10 women (1.5 million in the UK and 176 million worldwide).

It occurs when tissue similar to the lining of the womb grows elsewhere. These endometrial-like lesions are most commonly found in the ovaries and fallopian tubes, but can also grow on the vagina, cervix, bowel, bladder, and other pelvic organs. Rarely, they may appear in other parts of the body. Common symptoms of endometriosis include: Chronic pelvic pain and severe menstrual cramps, heavy periods, deep pain during or after sex, pain when urinating or defecating and infertility. And secondary symptoms like bloating (often called “endo belly”), severe fatigue and mental health struggles (98% of patients report an impact on their mental wellbeing). It can also sometimes cause complications with fertility.

It is frequently accompanied by adenomyosis, where this tissue grows into the muscular uterine wall. The 2026 report found that 32% of respondents had been diagnosed with both.

• Up to 40% of those with endometriosis are estimated to also have adenomyosis.
• If doctors only treat one, symptoms of endometriosis like pelvic pain and heavy periods often persist.

The Culture of Dismissal

” GP told me pain was normal for women. I was told it was all in my head. I was told I was too young to have health problems. I was told it was psychosomatic and there was nothing there.”

Perhaps the most heartbreaking stat is that 83% of patients were told by healthcare professionals that they were “making a fuss about nothing” or that their symptoms were “normal.”

• 50% went to A&E only to be sent home.
• 80% were put on the contraceptive pill before any investigation, effectively masking the signs of endometriosis and delaying surgical diagnosis.

“I felt over the moon that I finally had a diagnosis so that teachers, family, and just anyone would actually take me seriously now.”

For many, the dismissals were gendered or only corrected when a man was present:

“Doctors only really took my pain seriously when I mentioned it having an impact on my male partner’s life… they only really listened when I started bringing him along to appointments.”

The impact on living with endometriosis is not just physical; 98% say their mental health has suffered. One 21-year-old respondent shared:

“My mental health was genuinely so bad, the only way out I thought was suicide… if my mum hadn’t paid privately, I don’t know if I’d have been able to live like this anymore.”

The Gynaecology Waiting List: A Systemic Bottleneck

Even if you clear the first hurdle of being taken seriously by a GP, the path to endometriosis treatment remains blocked by a massive, systemic backlog. For many, the “referral” is just the start of a new, years-long wait.

“I was referred in April 2024 with a 67-week wait. By November 2025, I was still waiting, and the average wait had risen to 114 weeks.” — Patient Quote

At the start of 2026, roughly 750,000 women are waiting for gynaecology care in England. Gynaecology has now become the largest specialty for those on waiting lists aged 18–64. The statistics are a stark reminder of the “secondary wait”:

• 32% of patients are waiting over a year after being referred to secondary care.
• 9% are waiting over two years after their referral.

Despite the 10-Year Women’s Health Strategy, the reality on the ground hasn’t shifted. The NICE Guideline on Endometriosis (updated in 2024) and the Quality Standard (2018) were designed to ensure all healthcare practitioners suspect endometriosis immediately upon presentation. However, these standards have not been fully implemented in any UK nation.

Without mandatory enforcement or a clear audit process, these guidelines remain “suggestions” rather than the rule. This lack of accountability is a primary driver of the worsening 9-year diagnosis time.

This means that even with a supportive GP, the current infrastructure is failing to provide timely access to the specialists needed to manage symptoms of endometriosis or confirm adenomyosis.

Why are women waiting so long to seek help?

The 2026 report reveals a startling gap: 65% of patients recognize their symptoms started before age 17, yet only 35% sought help at the time. Ironically, the younger a person seeks help, the more likely they are to face dismissal and a prolonged diagnosis.

Our Repro Report echoes this trend. A Hertility-led study on PCOS diagnosis found that while over 80% of people said symptoms impacted their daily life and mental health, only 10.2% sought help immediately. Most (75.5%) waited up to two years, primarily because 73.2% didn’t realize their symptoms required medical intervention. Whether it’s PCOS or signs of endometriosis, we must stop normalising pain.

→ Download our Reproductive Report

What Is the Economic and Strategic Cost of Delay?

This isn’t just a “women’s issue”- it’s also an economic one. The NHS Confederation (2024) estimated an £11 Billion annual cost to the UK economy due to absenteeism from severe period pain, fibroids, and ovarian cysts.

Delayed diagnosis leads to:

• Repeated, avoidable GP appointments.
• Worsening endometriosis and fertility outcomes, making future endometriosis and pregnancy much harder to achieve.
• Frequent A&E visits 

Can We Reach a 1-Year Diagnosis Target by 2030?

However the report refuses to accept a decade of pain as the status quo. The goal is clear: Reduce the average diagnosis time to 1 year or less by 2030. 

To get there, they are calling for three strategic government priorities:

1. Fix Capacity: Reduce gynaecology waiting times and prioritise “endo” in financial planning.
2. Community Access: Expand Women’s Health Hubs so that gynaecology-trained ultrasound is available to everyone, specifically targeting the inequalities faced by ethnically diverse groups.
3. End the Silence: Mandatory menstrual health training for all healthcare professionals and better education in schools to help young people identify symptoms of endometriosis early.

Reasons for Hope: Turning the Tide

While the statistics highlight a system under strain, there are emerging signs that the medical community is beginning to listen. We are seeing small but significant shifts in primary care that prove change is possible when symptoms are taken seriously.

1. Progress in Primary Care

There is a growing awareness among GPs. In 2026, 14% of patients had their doctor suspect endometriosis within the first two appointments – an improvement from 10% in previous years. While 10 appointments remains the average before the word “endometriosis” is even mentioned, this slight uptick shows that advocacy and education are starting to permeate the front lines of the NHS.

“My new doctor was fantastic… she took me seriously, encouraged me to visit as regularly as needed, and expedited the referral due to psychological distress.”

2. Digital Innovation: NHS Online (2027)

A major structural shift is on the horizon. The NHS Online virtual hospital, set to launch in 2027, marks a potential turning point for menstrual health. By using the NHS App to triage patients, this service aims to provide:

• Fast-track access to specialist clinicians online.
• Localized testing coordinated by specialists, reducing the “wait-and-see” period.
• Priority care specifically for endometriosis and menstrual health conditions.

This digital-first approach could bypass traditional bottlenecks, ensuring that those living with endometriosis get expert eyes on their case much sooner. However, for this to succeed, it must be backed by a workforce of gynaecology-trained sonographers and robust local diagnostic centers.

→ Read the full report here

A Note from Hertility

The trend lines are moving the wrong way, and every month of delay is another month of a person’s life stolen by pain. We often see patients who have been misdiagnosed with IBS or have experienced years of medical gaslighting told their endometriosis symptoms are just “heavy periods.”

“Seeing this downward trajectory should be a wake-up call for everyone. More awareness, research, and change are needed in the clinical community. Hertility exists to give women access to the expert care they deserve, when they need it most. Our clinically validated health assessment has been designed to streamline diagnosis from 9 years to 6 days. Together, we can make a change.”  – Helen O’Neill  CEO Hertility Health

Are you concerned about your symptoms?

If you are struggling with pelvic pain or worried about how your hormones are affecting your life, you don’t have to wait nine years for an answer.