Hundreds of yellow-clad endometriosis sufferers and their supporters took part in the fifth annual EndoMarch London event on Saturday.
In one of over 60 demonstrations taking place across the globe, the eye-catching group travelled 2.5km across Central London to raise awareness of the disease and campaign for faster diagnosis, greater education and more research funding.
The march was organised by three volunteers in collaboration with Endometriosis UK, a charity which works with universities and research centres and runs support groups and campaigns.
Organiser Susie Stringfellow said: “We’re here today to raise awareness of endometriosis, which is a condition that affects one in ten women.
“This is the fifth year that we’ve been running the march and each year it’s getting bigger and more successful.
“This year we have around 650 people who have signed up to come along and meet us here in London today.”
Among the marchers was 19-year-old Amelia Davies, a first year nursing student at Middlesex University who became involved with the charity after being diagnosed with endometriosis aged 14.
She said: “I luckily used my dad’s private healthcare service and I got diagnosed straight away, which I know is very different to most people who normally take about seven to 10 years to get diagnosed.”
Since her diagnosis Davies has written about her experience on a blog and appeared on television to talk about the condition on the BBC’s Victoria Derbyshire show on behalf of Endometriosis UK.
Davies said she joined the charity to get more involved with fellow sufferers – known as “endosisters” – and find support.
“They’re a really positive campaign,” she added. “They bring loads of people together and you can tell that by the amount of numbers that have grown over the years and how many people have signed up to come to the walks.”
Central London group leader for Endometriosis UK, Jilly Neckar, agreed that the march provides an important opportunity for sufferers to come together.
She said: “The first time I came to the march it was just to meet other people. I’d just started going to the London group.
“I got diagnosed in December 2016 and I decided I wanted to get to know more people and really get involved with the charity. It’s a really good group of people.”
Neckar, 25, added that the group gave her “a purpose” after her problems with endometriosis began to severely impact her life.
“Before I was diagnosed I had to leave my job and change career because of it,” she said. “I was a management consultant in financial services, which is very long hours, really hard work and a lot of travel, so I couldn’t keep doing that after I was diagnosed.
“One of the big things for me is I’m now one of the co-leaders of the group and I’ve been able to do a lot of awareness campaigning. I absolutely love it because it’s given me a purpose in life.”
Endometriosis UK CEO Emma Cox also joined the march, which set off from Victoria Tower Gardens in Westminster and travelled north along the Thames.
Cox took the opportunity to highlight the charity’s current campaign – a petition to get menstrual wellbeing taught in schools.
“Something like 12 per cent of girls who started their periods last year in the UK didn’t know what it was when they started, and women are told their pain is normal when it quite clearly isn’t,” she said.
“We’re hoping to go and see the minister for education. There’s a window at the moment – they’re reviewing the sex and relationship education curriculum.
“We need to overcome the taboo of children talking about menstrual issues and to give girls and women the knowledge and language they need to understand when there’s something wrong and to seek help.”
