Endometriosis: Hundreds of patients share their heartbreaking stories - and why the NHS is failing them

People from across the UK have shared their heartbreaking experiences of living with endometriosis - as they say the NHS is “failing” them.

Living with the inflammatory condition is an uphill battle, from getting a diagnosis to navigating daily life and even accessing healthcare.

That’s why this Endometriosis Awareness Month, National World has launched Endo the Battle, a campaign to amplify the voices of those living with endometriosis across the UK and highlight the challenges patients face.

We have shared the stories of endometriosis patients who have paid privately or even travelled abroad for essential healthcare they should be able to access on the NHS, with one estimating that endometriosis had cost them and their family £400,000.

As part of the campaign, we asked you to share your stories with endometriosis via an anonymous survey.

And we have been inundated with almost 400 responses, highlighting delays in getting a diagnosis, the crippling costs of paying for private care and knowledge gaps within the healthcare sector.

Diagnosis delays

Delays in getting a diagnosis was a key theme. It takes on average 8 years and 10 months to access an endometriosis diagnosis in England and Scotland, with Northern Ireland patients waiting on average nine years and five months and in Wales a staggering nine years and 11 months.

Many who responded to our survey reported having their symptoms dismissed, normalised or downplayed, sharing they had been told by their GP their symptoms were “nothing sinister”, that they were “just unlucky”, or that the “only way to fix it was pregnancy.”

There was also a theme of those who had lived with symptoms, but only accessed an endometriosis diagnosis after experiencing infertility.

Patients also shared worrying experiences of being told their pain was related to “anxiety or depression”. One responder in England shared that “it took years of having to prove I didn’t have a mental health problem”.

In Wales, another patient explained they had been told they had irritable bowel syndrome (IBS) for several years, even though they had no IBS symptoms, and had to go through three surgeries before they finally got their diagnosis.

Others reported that even when they were listened to and referred on, waiting lists added to their diagnosis delay, with one responder in Northern Ireland sharing that they waited “two and half years just for an ultrasound.”

The crippling cost of treatment

In November 2024, new research revealed that waiting lists for gynaecology in the UK had doubled, with around three-quarters of a million women waiting for an appointment.

The lengthy diagnosis delays combined with soaring waiting lists for gynaecology has created the perfect storm for patients who told us they felt they had no choice but to go private.

From those who responded to our survey and had sought out private healthcare both in the UK and abroad, one of the main reasons was waiting lists. Many explained that the NHS waiting lists were just “too long”, and that they would have ended up “leaving their career”, or found themselves in “so much pain” or losing their “quality of life”.

Another added: “The NHS is failing us.”

Many of those who responded in England revealed their NHS operations or appointments “kept being cancelled” and they felt like they had “no choice” but to go down the private route. Lack of understanding was also noted, with one sharing they had to go private due to “challenges getting taken seriously for thoracic endometriosis”.

In Scotland, the picture was similar, with one sharing they had been informed, “the wait time for an MRI was 12-18 months with another 6-12 months for a follow up,” this wasn’t including waiting times if surgery was needed.

Patients in Scotland and Northern Ireland reported travelling for care, with reasons given including “medical gaslighting,” as well as “very long waiting lists” and not being able to “receive the care and treatment I needed”.

Medical gaslighting has been making headlines in recent years, in July 2024, speaking to the British Medical Journal (BMJ), Patient Safety Commissioner Henrietta Hughes explained “too often we hear about patients who have raised concerns being gaslighted, dismissed, and fobbed off.”

And, what we’ve heard from our survey seems to be an accurate reflection of the current situation for endometriosis patients across the UK.

When asked if they had seen an increase in the number of patients accessing private healthcare for endometriosis, Gabz Pearson, advocate and co-founder of charity the Menstrual Health Project told us: “We've seen a massive surge in people having to go private because they can't access appointments to see specialists or are waiting for years on the waiting lists.

"It's just gotten even worse over the last few years and I just don't see the tide turning and it improving at the rate that we need it.”

Jodie Hughes, founder of charity Endo South Coast, added: “We have a support group of over a thousand people. And one of the biggest conversations is - who is the best? How can I get to them and how much is it going to cost me?

“Or even, how can I have that first conversation with a consultant to then get onto the NHS waitlist? Some people aren't even getting past the GP level and getting referred. They're having to go private to have that first conversation with a consultant who will then put them on an NHS waitlist.

“People are having to do this just to get some form of life back.”

The stories that hundreds of people have shared with us highlight that something needs to change.

That’s why we have written an open letter to health ministers in England, Wales, Scotland and Northern Ireland to highlight the reality of navigating care - and call on those in power to end the battle.

The Endo the Battle campaign is being spearheaded by health writer Sarah McCann - read her endometriosis story.

If you have been affected by the content of this article or suspect you may have endometriosis you can find out more at the Menstrual Health Project.