Endo the Battle: 'Endometriosis has cost me £45k - it's had a catastrophic chokehold on my life’

Imagine leaving your home behind to have surgery in a country you’ve never visited before.

That was the reality for Laurene Agnew, 35, who lives with endometriosis. Despite being named one of the top 20 most painful conditions by the NHS, the mother-of-two found herself leaving Northern Ireland twice to access healthcare.

Endometriosis is a systematic inflammatory condition where cells similar to the lining of the uterus are found elsewhere in the body which can cause debilitating symptoms. In Northern Ireland patients wait on average nine years and five months for a diagnosis, combined with the longest gynaecology waiting lists in the UK, many patients feel they have no choice but to pay privately or travel to access endometriosis care elsewhere.

This been recognised by those in power too, with Derry and Strabane Council passing a motion in February demanding better care for those living with endometriosis.

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, or travel abroad, to make those in power aware of the huge impact this can have on both them and their families.

‘It had a catastrophic chokehold on my everyday life’

Laurene’s story is not unique, she told us.

“There's nothing really different about my journey with endometriosis,” Laurene said.

“I spent a decade trying to get answers, trying to seek a diagnosis, trying to understand what's happening with my body. I was repetitively told, just teenage hormones, it's just a period, it's just normal.

“And I was shot down at every stage until at 23 I developed pain and bleeding with intercourse, and that was the symptom that really changed how gynaecology saw me.”

She was referred for a diagnostic laparoscopy, which discovered she had stage four endometriosis, she would go on to have nine surgeries for endometriosis and surgery for suspected appendicitis which she now believes was related to her endometriosis.

Laurene had seven surgeries in Northern Ireland on the NHS and privately, before going to London in 2022 where she had surgery to extensively excise (surgically cut away) her endometriosis with a multidisciplinary team. Her most recent surgery in January saw her travel to the Bucharest Endometriosis Centre in Romania.

She has since noticed relief, but describing the pain of endometriosis, Laurene said: “Prior to the most recent surgery, it had an absolutely catastrophic chokehold on my everyday life, starting from the moment I opened my eyes.”

Describing the financial impact of paying privately and travelling for surgeries Laurene described it as “financially devastating”, estimating that both she and her family had paid “upwards of £45,000” on accessing private care both in Northern Ireland and elsewhere.

It’s led to tough sacrifices from not being able to go on a honeymoon, to not having family holidays or being able to send her children to extracurricular classes.

“The stress then escalates the symptoms,” she said. “The financial impact isn't just one surgery, it's the cascading effect afterwards.”

‘I was told my case was mild’

Laura Moore, 34, had three surgeries on the NHS in Northern Ireland, after experiencing debilitating symptoms that began after her period first started. She had emergency surgery for a burst cyst when she was 17 and would go on to have three more surgeries to investigate if she had endometriosis - but was instead told she had adhesions.

Laura said: “They had mentioned endometriosis to me, and I looked it up and realised I have almost all those symptoms. I went for three laparoscopies here in Northern Ireland with three different surgeons, and they didn't find any endometriosis.”

She was eventually diagnosed with endometriosis after seeing a surgeon privately in Northern Ireland for her fourth surgery in June 2021. She was told her case was mild, but experienced two more emergency surgeries for ovarian cysts and ovarian torsion.

Her symptoms did not improve so she decided to travel to London for an initial consult and ultrasound which found she had two endometriomas, which are cystic masses which form on the ovaries.

Laura had surgery with a multi-disciplinary team at the London Endometriosis Centre, explaining to me “it was a lot more extensive than initially diagnosed here”. Endometriosis was excised from her bladder and bowels, whilst her bowel and ovary was stuck leaving her right ovary and tube removed.

“I think if I hadn’t gone to London, the extent of it still wouldn't have been diagnosed,” Laura added.

‘We need honesty and transparency’

Northern Ireland is the only region of the UK without a women’s health strategy and currently has the longest gynaecology waiting lists in the UK. The Getting It Right First Time report which was published in February 2024 found that there were more than 30,000 women on the waiting list for gynaecology, with 5% waiting more than three years for treatment.

In a statement issued to us, the Department for Health in Northern Ireland said that following the publication of the report, it has established a Regional Gynaecology Services Forum with Trust, primary care and Public Health Agency representation.

A spokesperson said: “The Forum oversees ongoing service improvement in this speciality, ensuring these improvements are implemented at a local and regional level. A separate Task and Finish Group has been established to consider how the endometriosis pathway can be improved across Northern Ireland.”

Altnagelvin Hospital is an accredited British Society for Gynaecological Endoscopy (BSGE) endometriosis centre in Northern Ireland.

However, according to the BSGE website, there is no other accredited, or provisionally accredited, centre in Belfast or any other Northern Ireland health trust. The criteria to become a centre is 12 cases of rectovaginal endometriosis a year.

The spokesperson for the Department of Health added: “The management of patients with Endometriosis and the development of pathways for this group of women and girls is being taken forward by the Endometriosis Task and Finish Group of the Department of Health’s Gynaecology Getting it Right Forum.

“Accreditation of British Association of Gynaecology Endoscopy (BSGE) Endometriosis Centres will be part of the pathway work.”

When asked what needs to change for endometriosis care to be more accessible, Laurene said: “I think what needs to happen is we need doctors to admit that they do not know enough. We need honesty and transparency.

“We need a commitment by the Health Minister to actually come through. We don't need action plans, we don't need meetings. We don't need to talk about the issues we are aware of, we’ve been screaming about the issues for decades now. We've already had the conversations, we are living in agony, we are having our lives destroyed.”

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 Endometriosis Foundation.