Endo the Battle: The Scottish patients 'so desperate' they've travelled 2,000 miles for endometriosis care

Imagine feeling relieved to discover you have a chronic illness that has been named one of the top 20 most painful conditions by the NHS.

This was the reality for 30-year-old Emily Mann, who spent years in excruciating pain and waiting for answers, before travelling more than 2,000 miles for treatment.

Emily is not alone in their battle with endometriosis - patients in Scotland currently wait on average eight years and 10 months to get a diagnosis.

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.

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.

However, diagnosis delays and lengthy waiting lists means some patients in Scotland feel they have no choice but to pay privately or travel to access endometriosis care elsewhere.

‘I was absolutely desperate’

Emily has recently returned from the Bucharest Endometriosis Centre, in Romania, where in January they underwent a laparoscopy excision surgery which confirmed endometriosis.

She was 10 years old when she started experiencing pain, and her symptoms got progressively worse.

“I would miss school during my period, be completely out of action, be bedridden, and the only solutions offered by my GP were: lose weight, go on a pill, or some other form of hormonal contraception,” Emily told us.

After a number of ultrasound scans that came back normal, it was only when BBC Breakfast’s Naga Munchetty shared her experience of living with adenomyosis in May 2023 that her family started to realise the gravity of Emily’s symptoms.

In November 2023, they initially travelled to a multidisciplinary endometriosis centre in London where deep infiltrating endometriosis and adenomyosis was picked up by their ultrasound team.

Emily said: “I was happy, smiling and relieved, but there were also tears streaming down my face.”

However, when Emily returned to Scotland, she was told she would need a diagnostic laparoscopy for an official endometriosis diagnosis. She was placed on a waiting list to see a specialist.

“They said that that was going to be about another two years,” Emily said. “At this point, I was absolutely desperate.”

In January 2025, she travelled more than 2,000 miles to Bucharest, where she finally had surgery confirming her diagnosis and excising the endometriosis.

“I had to convince my immediate family and my wider family that it was worthwhile and necessary and I needed to go,” Emily added.

“They thought it was very extreme and unnecessary. And I agree it's extreme, it is far away, but it was absolutely necessary.”

‘A light bulb moment’

Emily is not the only Scottish patient we spoke to who had travelled to Bucharest to access endometriosis care. Rey, who has asked to withhold their surname to protect her privacy, made the journey in 2021 after finding their symptoms had not improved after a diagnostic laparoscopy in Scotland.

Rey got their first period when they were 16, but was misdiagnosed with rumbling appendix, irritable bowel syndrome, sciatica - and also attributed the pain to dancing injuries.

Rey said: “I got to the point where it was affecting my day-to-day life so much that I started doing my own investigating, after years and years of trying to get help.

“This word endometriosis came up, I had never heard that word in my entire life. But the more I looked into it, it was a light bulb moment - I thought, ‘I’m pretty sure this is what I've got.’”

Rey started tracking her symptoms and following endometriosis advocates online to learn more. After presenting the findings to a GP, she was referred to gynaecology care and eventually had a laparoscopy, which confirmed she had “one spot” of endometriosis and suspected adenomyosis, however their symptoms did not improve.

After researching their options they decided to travel outside of Scotland to the Bucharest Endometriosis Centre. Their team of surgeons found additional areas of endometriosis, along with adenomyosis and fibroids.

Rey, now an endometriosis advocate, said: “The fact that I had to travel for care that far, for a disease that is so common, is unacceptable. And it's on the healthcare system to fix this, not the patients. We shouldn't have to be advocating this hard for a disease that is overwhelmingly common.

“Things need to change at the medical institution level - when people go to university for medical training, and existing practitioners need to be upskilled.

“Then the consistency of information for patients across the board starting at school so that they're aware of what to look out for from a young age so they can spot things that are going awry.”

‘You go through grief again and again’

Another Scottish patient, Amy Liston, 25, is a self-employed artist who is currently saving up to travel to London for care in a multidisciplinary endometriosis centre, after her symptoms continued following a previous surgical procedure.

Her symptoms of endometriosis first started when she was eight years old. She experienced bowel symptoms which were put down to IBS and missed many days of school due to the pain she was experiencing, often having to visit the school nurse.

Talking about the impact endometriosis has on her life, Amy explained: “The periods were the biggest issue up to a point, but then there was the IBS and over the years my health has significantly declined.

“I need to carry a stool with me so that if I'm standing at the bus stop I can sit. I can't walk to my studio anymore. My day is dictated by how I feel when I wake up. I've also developed fibromyalgia.”

Endometriosis has also had a huge impact on her mental health. Amy said: “You accept that your body doesn't work and then you get used to it and then you go through that grief again and again and again.”

On what needs to change to make endometriosis care more accessible in Scotland, Amy said: “I think it needs to be completely deconstructed and put together again. The first issue is that it is not a reproductive disease. You could stop your hormones, you could remove your uterus and it still can grow - I think that's the biggest misconception.”

Responding to our questions on what’s being done in Scotland to improve endometriosis care, Women’s Health Minister Jenni Minto said: “We are working to raise awareness about endometriosis and improve access to the best possible care and support. Timely access to gynaecology services will be a priority in the next phase of our Women’s Health Plan.

"In 2024-25, we allocated over £450,000 to gynaecology from our £30 million targeted investment in planned care, delivering around 3,500 additional new outpatient appointments. The 2025-26 Budget, will provide a record £21 billion for Health & Social Care, including a commitment to provide £200 million to help reduce waiting times and improve capacity.”

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.