Rising figure in family-run Mauchline operator Milligans Coach Travel, Lynsey Milligan (pictured), has raised over £1,000 for the University of Edinburgh’s ENDO1000 project — a major UK-wide research effort into endometriosis, one of the most common yet least understood medical conditions affecting women and people who menstruate.
The amount raised, achieved through a competition offering a free coach trip to Liverpool and Chester, is enough to fund the participation of one woman in the project, which aims to transform diagnosis and treatment of the condition.
According to the NHS, endometriosis affects one in 10 women in the UK and is among the top 20 most painful medical conditions. It can take many years to diagnose.
Lynsey learned she suffered from endometriosis in 2023 after almost 10 years of symptoms, and her experience reflects a reality faced by thousands of women across the UK. “I was diagnosed after nearly a decade of pelvic pain and fighting with doctors to take me seriously, who said my pain was ‘normal’,” she says. “Not one mentioned the condition to me until I brought it up to them from my own Google search. It was all a lack of research, funding and awareness, that comes back to medical misogyny.
“When I finally got my diagnostic laparoscopy, my pain returned three months post-op, and I was told that unfortunately I’m just going to have to find a way to live with it. No pain medication gave me any relief, I had been treated with an ineffective surgery. There are few specialists trained in its removal. I was 24, about to start my mechanics apprenticeship and working towards learning the operations of the family business to run it in the future. I couldn’t get out of bed. How was I supposed to live like this?”
The ENDO1000 project, led by Professor Andrew Horne and his team, has provided optimism. The project will collect biological samples from 1,000 participants and aims to create new diagnostic tools and personalised treatment strategies. Lynsey launched her own fundraiser after learning about the project via Scottish entrepreneur Dr Marie Macklin.
“Marie had previously reached out with some words of support when I posted my diagnosis on Twitter a few years ago to raise awareness, as she too was diagnosed after suffering for decades in pain,” says Lynsey. “She was the founding ambassador and funder for ENDO1000’s #talkENDO women’s healthcare awareness campaign, and I am so passionate about how if this condition had more awareness, we wouldn’t be failing women and young girls the way we are… so I became an ambassador.”
In February the ENDO1000 project successfully raised enough funds to recruit the first 250 participants. The target now is to recruit 500 participants by the end of 2025.
Lynsey says it means the world to have successfully raised funding to recruit an individual to the project. “I am so grateful for everybody’s support from sharing my posts, sending me messages of support, to entering the competition or donating to my JustGiving,” she says. “My original goal from the start was thinking about how amazing it would be to raise enough to make that much of a difference.
“It’s not just raising the funds that has been rewarding; the amount of women who have reached out when I shared my diagnosis, asking about my symptoms because they think they might have endometriosis, and later coming back to thank me because they took my advice and managed to get their diagnosis. It’s amazing the impact that sharing your story, symptoms and journey can have on speeding up the time it takes for others to get diagnosed. I can’t stress enough how much more awareness helps.”
Lynsey hopes increased awareness around endometriosis will help challenge misconceptions. “It is not just a reproductive condition, it’s a full body inflammation disorder,” she explains. “It wrongfully gets treated as such because of its name. Pain can come randomly and last however long, symptoms are varied and different for everybody depending on where their endo is growing (for example, sciatic pain). New symptoms can present at any time and my experience and symptoms may be completely different to another woman’s.
“My advice to anyone is that you know your body better than anyone — as uncomfortable as it is, you have to advocate for yourself because nobody will do it for you.”
To support the campaign
JustGiving — donations
Competition entry — closes 6 June
