‘We can’t stay silent over endometriosis struggle’

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.

“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.

“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.”