It’s time to end the stigma: 62% of women would put off going to the doctor with symptoms of endometriosis

Monday, March 01, 2021

New stats from Endometriosis UK this week for Endometriosis Awareness Month reveal that:

  • 62% of women (aged 16-54) 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% of 16-24-year-olds.

  • 47% of the female population (aged 16-54) would be concerned to tell their employer they needed to take time off sick due to endometriosis, rising to 57% of 16-34-year-olds.

  • March is Endometriosis Awareness Month

  • 1.5million UK women and those assigned female at birth are currently living with endometriosis, with average diagnosis time standing at an unacceptable 8 years

Endometriosis UK says it is vital that Governments, society, the NHS and workplaces wake-up and recognise the symptoms and impact endometriosis can have, and afford those with the condition the support and access to treatment they need to manage their symptoms.

Commenting on the new research, Emma Cox, CEO of Endometriosis UK said: “Endometriosis is a long-term chronic health condition affecting 1.5 million in the UK, yet it still all too often considered a taboo or not important due to links with the menstrual cycle. Symptoms including chronic pelvic pain, painful periods, painful bladder and bowel movements, and infertility, can have a major, life-long impact, physically and mentally. But far too many find their symptoms are not believed nor taken seriously.

“Myths such as “chronic period 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 8 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.”

This Endometriosis Awareness Month, Endometriosis UK is calling an end to the stigma associated with endometriosis, and is asking:

  • UK Governments to make a commitment to reduce diagnosis time for endometriosis with a target of an average of 4 years or less by 2025, and a year or less by 2030.

  • To ensure a minimum baseline for endometriosis diagnosis, treatment and management is available to all those who need it, not a postcode lottery, by implementing the NICE Guideline on Endometriosis Treatment and Management (2017), adopted by the NHS’s across the UK but not implemented.

  • A commitment from all 4 nations to include compulsory menstrual wellbeing in the school curriculum so that young people recognise the warning signs of menstrual health conditions and know when to seek help. This is compulsory in schools in England from 2020, but is not UK wide.

  • Employers to recognise the impact of endometriosis in the workplace, and afford their colleagues the support they need to manage their condition, as they would any other chronic condition.

  • For anyone experiencing symptoms of endometriosis to recognise they may need help and be confident to contact their GP,not be put off by stigmas associated with the condition or delay seeking advice due to the COVID-19 pandemic.

ENDS

Case study: Endometriosis UK Awareness Month Ambassador - Stef Williams:

Known to her 1.4m Instagram followers as Stef Fit, the UK's leading trainer has battled endometriosis since her early twenties. Like most women, Stef intuitively knew something was wrong with her body. But for a long time, she felt too self-conscious to go to the GP - she felt embarrassed and like she wouldn’t be taken seriously. 

Stef’s symptoms became increasingly debilitating, including crippling stomach pain, pain during sex, and fatigue. Stef also experienced unexplained weight gain, bad skin, disrupted sleep and severe depression. Eventually at age 24, Stef was diagnosed with endometriosis and a year later, underwent laparoscopy surgery to remove the endometriosis tissue outside her uterus and insert the Mirena coil.

Stef has spoken candidly for years around her experience with endometriosis to fans all over the world. She wants women everywhere to know that with the right medical support, it’s totally possible to keep doing what you love with endometriosis.

“I’m so delighted to be an Endometriosis UK Awareness Month Ambassador. This is a charity that is so close to my heart and I’m honoured to share my story. I hope that this month will give women the confidence and opportunity to get themselves checked out. If you’re feeling scared, just know that I was too and you’re not alone - one in ten of us women in the UK suffer from the condition and there is hope! It all starts with raising awareness.”