Endo the Battle: Endometriosis has cost me and my family £400k - I was told I'm just 'unlucky'

Imagine waiting two decades in agonising pain for a diagnosis.

That’s the reality Jen Moore has faced, spending over twenty years of her life searching for answers. When Jen got her first period at age 11, she found herself screaming in pain, unable to stand up and passing out.

“It was horrific,” Jen recalled.

The 35-year-old had known about endometriosis as her mum also has the condition, but it would take decades of self-advocacy, persistence and eventually paying privately for surgery before she would get her answers.

Jen’s story is not uncommon, it takes on average eight years and 10 months to get a diagnosis for endometriosis in England, with the numbers of women on gynaecology waiting lists standing at over half a million.

This Endometriosis Awareness Month, we have launched the Endo the Battle campaign, to amplify the voices of patients with the common condition. We are telling the stories of those who have had to seek care in the private healthcare sector to make those in power aware of the huge impact this can have on both them and their families.

It’s an uphill battle that Jen, of Cambridge, knows all too well. When she first sought help from her GP, she remembers: “We were just told, give it time, and we kept going back and back. Before my next birthday, I was put on the pill and just told, look, this will sort her out. There was no investigation into what was causing pain.”

She would be on the pill for 22 years and whilst it did dampen a lot of the symptoms, Jen still knew there was something not right. Every time she would come off the pill for her breakthrough bleed, the excruciating pain would leave her in bed, unable to attend school or work.

Jen added: “I was still going back to the doctors. As I aged, the comments went from, ‘you're just an unlucky one, these things just happen’ to ‘you know, half the world has a period. What are you expecting us to do with you?’ - so I started believing it.

“I started thinking, well, maybe everybody else is just dealing with this a whole lot better than I am. Maybe I just have a low pain threshold.”

By now she had a thriving wedding cake business and her symptoms were having a huge impact on her career. In the midst of lockdown, Jen decided to come off the pill, experiencing what she described as “an inflammation nuclear bomb” going off in her body.

Within two cycles she was bed bound almost every day, passing out, being sick and bleeding through layers of protection. She started to use mobility aids because of the pain and found her hips would buckle under her, meaning she had to crawl from her bed to the bathroom.

Her husband convinced her to try to find a medical professional who would listen, so she wrote down every symptom she was experiencing and together they phoned her GP.

This time the doctor listened, and was the first to refer her for an ultrasound - but Jen was told there were abnormalities found but no evidence of endometriosis.

“And that was that, like the NHS pathway completely shut down,” Jen said.

It was then that Jen, out of desperation, sought private care. After a consultation and MRI, she was finally given a working diagnosis of endometriosis and her first surgery was booked in, but excision was not performed and she found herself in the same pain.

After getting a second opinion through private care, she had a second surgery where an endometriosis specialist found a “huge plaque of endometriosis that had wrapped itself around my ureters and was choking them”, Jen said.

Within that time frame she still hadn’t been seen by the NHS.

Living with endometriosis can have a huge financial impact, in February the Office for National Statistics found that those with the condition experienced a significant decrease in earnings, which makes funding private care even more difficult.

“Over the last four years, endometriosis has cost me and my family about £400,000 in direct and indirect cost,” Jen said.

“Included in that is surgery, scans, pharmacy, but also the loss of earnings. I had my own business for around nine years which was doing very well - before I was forced to give it up because of these conditions.”

‘I’ve had to fight for care at every corner’

In Wales, it is a similar story - the region has the longest wait to get an endometriosis diagnosis at nine years and 11 months.

Anna Cooper, co-founder of the Menstrual Health Project, a charity in England and Wales that provides support and toolkits for anyone who suspects they have endometriosis, knows only too well the battle to access a diagnosis and the financial impact of seeking out private healthcare.

Anna explained: “It's really difficult in Wales, you have to have your care within your health board. I had no endometriosis consultant and I've had to fight for care at every corner.”

She has undergone 17 surgeries for endometriosis and lives with two stomas, accessing care both in private and through the NHS.

Anna added: “My urologist, who's on the NHS, said I needed a urostomy, otherwise I was going into kidney failure because the damage endometriosis is done.”

Despite the risk of Anna going into kidney failure the waiting list was still two and a half years, so she decided to make the decision to go private.

‘We’re falling flat’

Anna is now advocating and raising awareness of endometriosis thanks to the Menstrual Health Project, which she co-founded. Through her charity work she’s noticed a pattern.

Anna said: “In Wales, it seems common that women are just ignored. It’s sad, because I see it so much with the work that we're doing now, that nothing's improved from like 15 years, if anything, we've gotten worse.”

Jen is now an endometriosis and adenomyosis advocate and educator, sharing factual information on her Instagram account Jen.Dometriosis, as well as founding Endo Education.

When asked what needs to change for endometriosis care to be more accessible for patients, she said: “There’s three parts. There's knowing to speak up because you know it's not right. Then there's somebody believing you. And then there is knowing who to send you to and then knowing how to treat it or manage it.

“And we're falling flat on those last two points in particular.”

NHS England has been contacted for comment.

Responding to our questions on what is being done in Wales to improve endometriosis care, the Welsh Government said: “Endometriosis is one of eight priorities in our Women’s Health Plan for Wales, which sets out key actions that will lead to improvements.

“We have already funded endometriosis nurses in every health board, developed the Endometriosis Cymru website and provided £50 million of additional funding to help cut the longest waiting times, which includes gynaecological conditions. We are also working with GPs to raise awareness of the condition and make every contact count.

“Funding of £3m will also be used to establish a Women’s Health Hub in every health board by March 2026, to support timely diagnosis and management of menstrual conditions including endometriosis.”

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 about the signs and symptoms and what support is available at the Menstrual Health Project.