Spotlight on painful health condition that too many women still suffer in silence

VICKY Chapman had never heard of endometriosis before being diagnosed with the condition at 29.

Vicky, now 32, had been getting painful periods since she was 11 – a tell-tale symptom – but was told by doctors it was “normal”.

She is one of around 1.5 million women in the UK living with endometriosis, where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes.

Vicky, from Arbroath, founded the Endometriosis UK Dundee Support Group, in January 2019, not long after her diagnosis.

“Despite me going to the doctor when I was younger, I hadn’t heard the word endometriosis until I was diagnosed,” she said.

“I was just told it was normal, what I was going through.

“It comes down to the education aspect; that is getting better.

For the start of Endometriosis Awareness Month today, Endometriosis UK released new figures showing 62% of women aged 16-54 avoid going to a doctor with symptoms of the condition, rising to 80% for 16 to 24-year-olds.

Among the reasons are that sufferers don’t think their symptoms are serious enough to bother a doctor; embarrassment; they doubt they would be taken seriously or think symptoms, including painful periods, are normal.

It also found 42% of women aged 16-54 would worry about telling their employer they needed time off due to endometriosis, rising to 57% for 16 to 34-year-olds.

Dundee mum Demi Brown has been plagued by chronic pain but wrongly believed it was due to a C-section when giving birth to her daughter, Daisy, in May 2017.

She wants greater awareness so women are diagnosed sooner and get better support.

“It’s really important to raise awareness about this for women,” she said.

“The pain can be that intense that it can actually lead to women feeling suicidal.

“It’s not taken seriously enough, a lot of people think it’s just bad periods but it’s worse. Girls as young as 11 can get it, so it’s really important they know.

“I also think there’s a lot of sexism involved. They’ll say it’s just a period and you’re a woman, get over it.

“I had to fight to get a diagnosis.” Last year, a Westminster inquiry into endometriosis, which surveyed 10,000 sufferers, found there had been no improvement in diagnosis times in a decade – taking eight years on average.

Endometriosis UK is calling on governments across the UK to commit to reducing the diagnosis time, with a target of an average of four years or less by 2025, and a year or less by 2030.

Vicky said: “This recommended reduction is a target and hopefully with the research, we will be getting some way towards that, if not hitting it.”

Endometriosis UK said it is vital that governments, society, the NHS and workplaces recognise the symptoms and impact endometriosis can have and give sufferers the necessary support and access to treatment .

Emma Cox, CEO of Endometriosis UK, said: “Myths such as ‘chronic pain is normal’ or ‘you must have a low pain threshold’ manifesting in society, workplaces, schools and even healthcare settings contribute to those experiencing symptoms being put off from seeking medical advice and contribute to diagnosis taking on average a shocking eight years.

“The impact of delayed diagnosis on people’s physical and mental health can’t be overstated.

“If undiagnosed, the disease may progress, and negatively impact people’s careers, education, relationships and all aspects of their life.”

The charity wants a commitment from all UK nations to include compulsory menstrual wellbeing in the school curriculum so young people recognise the warning signs of menstrual health conditions and know when to seek help. This is compulsory in English schools but is not UK-wide.

Endometriosis UK would also like to see employers recognise its impact in the workplace and give staff the support they need to manage their symptoms, as they would any other chronic situation.

A Scottish Government spokesman said living with endometriosis is “incredibly difficult and any delays to treatment can be distressing”.

He added: “We are determined to improve services for all those affected. Action to better support women and improve diagnosis are

Vicky Chapman, who founded the Dundee support group for Endometriosis UK, had suffered pains since she was 11. Right: Dundee mum Demi Brown, who is also a sufferer.