Darwen woman models the painful reality of endometriosis in campaign

After seven and a half years of medical appointments, Emeley McGuinn, 27, was diagnosed with the debilitating condition, endometriosis in 2016.

Endometriosis is a long-term condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes and can affect women of any age. Symptoms include heavy periods, pain during sex, constipation and difficulty getting pregnant.

Emeley’s long battle isn’t unique as, according to charity Endometriosis UK, the average diagnosis time for women stands at eight years despite 1.5 million people living with the condition.

Special effects makeup by Toni-Louise Fay to portray what endometriosis feels like on the inside (Image: Jonny Bentley 360)

To raise awareness of the condition, the secondary school teacher collaborated with a special effects makeup artist, Toni-Louise Fay, and photographer Jonny Bentley, on a campaign to highlight the suffering women experience.

Toni-Louise, from TLF Make-up, and Jonny created a visual representative to showcase how a person with endometriosis feels on the inside with Emeley as the model.

Emeley said: “I really wanted to campaign and raise awareness so I put the idea forward and they both jumped on it.

“Toni spent hours researching the condition and seeing what it looks like on the inside to create an amazing portrayal and Jonny also has a hidden disability so wanted to represent what that is like.

“I think the biggest issue with endometriosis is it’s hidden. People can see a broken finger or bone and know it hurts but the only way you can see endometriosis is if your cut open or if it’s bad enough to show up on an MRI scan.

“The amount of time I’ve gone into A&E and been told it’s all in my head is shocking. Before I was diagnosed, I was told I had appendicitis, then they thought it was IBS.

“We don’t have enough specialists and if I need treatment, I have to go to Burnley hospital but that place can only hold 16 women and that’s for women who are pregnant or having abortions too, so sometimes there’s not a bed for you. People need to be made aware of how serious it can be.

"I’m currently six weeks post operation as I had endometriosis in my bowel but was told nothing could be done until it presents as worse but it would have been too late by then so I had to go private. 

"I’m fortunate I was able to because of my partner’s work but that's not an option for a lot of women."

In the UK, 62 per cent of women aged 16 to 54 would put off going to a doctor with symptoms of endometriosis because they don’t think it’s serious enough to bother a doctor with, they’d be embarrassed, don’t think they’d be taken seriously, or think symptoms including painful periods are normal.

This statistic rises to 80 per cent of 16 to 24-year-olds and Emeley believes this is due to a lack of research.

She added: “I’ve been lucky enough to have an understanding employer and have had it so well I’ve been able to manage it. But women can lose their jobs in a matter of seconds and get told it’s all in their head. I’ve been told to just take some paracetamol and it’s scary.”

Emeley, Toni-Louise, and Jonny did the photoshoot on Saturday, February 11 and the work has attracted attention worldwide.

Emeley said: “Without Jonny and Toni we wouldn’t have been able to do this. They gave up their time for free to raise awareness of the condition which is absolutely phenomenal.

“We’ve had people from across the globe like America, the Philippines, share our campaign and that’s what we want to do.

“We want to get the word out there to be taken more seriously and treated with respect and dignity we deserve.”