'We can't stay silent over endometriosis struggle'

8 hours ago 4
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Molly Brewer & Lauren Hirst

BBC News, Manchester

BBC Roya Rasouli is smiling directly at the camera. She is standing next to a collection of leggings designed to help those who struggle with endometriosis. She is wearing a light blue blazer and has a tape measure around her neck. BBC

Roya Rasouli has made it her mission to help others

A woman who struggled with undiagnosed endometriosis for 10 years has urged fellow sufferers not to suppress their health needs in the workplace.

Fashion designer Roya Rasouli, 27, made a promise to herself on her hospital bed to share her story after finally being given a diagnosis for the condition in 2019.

She said she vowed to speak up as part of her personal mission to help others, calling for better workplace support.

"It feels heartbreaking that women are left to go and deal with it behind closed doors," she said.

Endometriosis is the name given to the condition where cells similar to those in the lining of the womb grow in other parts of the body, leading to severe pain.

Ms Rasouli, from Manchester, said she was passed from doctor to doctor for a decade before getting her diagnosis and undergoing surgery.

Roya Rasouli Roya Rasouli is in a hospital bed and is wearing a white hospital gown following surgery. Roya Rasouli

Ms Rasouli had surgery twice following her diagnosis in 2019

"I had seen around 30 specialist gynaecologists and no-one ever found out what it was," she said.

"Every single person had a different point of view because all my scans and MRI results were clear.

"At one point I started doubting myself and I started to think maybe it's just me.

"I just felt extremely alien and isolated, all alone and like no-one gets me."

One area of her life that has been impacted is her work.

Ms Rasouli said workplaces had not always understood or supported her condition.

"Some people just don't get it and it is quite hard when a workplace is not diverse, open and inclusive," she said.

Ginisha Vekaria, workplace menstrual wellbeing programme manager at Endometriosis UK, said: "Around one in six may think about giving up their work.

"It's not because they can't do their job, it may just be that they might be in pain and missing out on work so again it goes back to that knowledge and goes back to that support."

The Employment Rights Bill is currently moving through parliament, which will mean large employers will be required to produce support plans for reproductive health.

But in the meantime, Ms Rasouli hopes her work will make some difference.

She has since created FemWear, a fashion brand aimed at providing comfortable clothes for women with gynaecological health and gut conditions.

She wanted to share her story to show other women "that it is possible to succeed" despite the health challenges.

Roya Rasouli, Roya Rasouli is standing in front of a screen which includes information about endometriosis. In front of her are number of people who are sitting down and listing to her talk about the conditon.Roya Rasouli,

Ms Rasouli wants to foster a sense of community through her advocacy for endometriosis

"Since 2019 on the hospital bed, I vowed that I cannot be silent for the sake of 200 million women worldwide," she said.

"We have to lift each other and be open and say 'it's ok, life sucks, life's painful', there's no cure for it as of yet but we cannot stop living.

"We have to apply for the jobs of our dreams and give credit to ourselves.

"Endometriosis does not define me and does not define your skillset."

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