Endometriosis Awareness Month launches to tackle the fact 54% don’t know about endometriosis

Endometriosis Awareness Month launches to tackle the fact 54% don’t know about endometriosis

 

Half of the UK isn’t aware of the life-changing condition that’s as a common in women and those assigned female at birth as diabetes and asthma

  • Endometriosis affects 1.5 million women and those assigned female at birth in the UK, similar to the number affected by diabetes or asthma
  • 54% of people do not know what endometriosis is, increasing to 74% of men
  • 62% of women between the age of 16-24 don’t know what endometriosis is
  • 45% of women are unable to name any symptoms of the condition
  • Endometriosis UK calls for a step change in public attitudes to women’s health

New research from Endometriosis UK reveals the shockingly low levels of public awareness for the potentially life-changing condition, endometriosis. Despite affecting 1 in 10 women from puberty to menopause - 1.5 million in the UK - the majority (54%) of people do not know what endometriosis is.

Endometriosis is a long-term condition which sees tissue similar to the lining of the womb grow in other parts of the body, generally on organs in the pelvic cavity such as the ovaries, fallopian tubes and bowel. It can be painful and may have a devastating impact on a woman’s education, personal and professional relationships, mental health, and quality of life.

The findings, published to mark the launch of Endometriosis Awareness Month in March, show widespread lack of awareness for the condition and for its symptoms. 56% of people cannot name any symptoms of endometriosis. Of those that do know endometriosis is a gynaecological condition, 35% cannot name any symptoms.

Awareness is higher among women but still alarmingly low, considering it affects 1 in 10 from puberty to menopause, although the effects may be felt for life. 33% of women do not know what endometriosis is and 45% cannot name any of its symptoms. In contrast, 74% of men do not know what endometriosis is.

Endometriosis can occur from puberty to menopause, but awareness among young women is alarmingly low. 62% of women age 16-24 do not know what endometriosis is and 67% cannot name any symptoms. Endometriosis UK says that lack of education in schools is contributing to societal taboos in talking about female health; delaying access to treatment; and increasing diagnosis time which averages at a shocking 7.5 years.

This lack of awareness is also contributing to those suffering not receiving the right care at the right time – and these statistics must be a wake-up call to society and the NHS that endometriosis can no longer afford to be ignored. Endometriosis costs the economy £8.2 billion each year in treatment, healthcare costs and loss of work, and yet lack of research means we don’t even know what causes it, and the only definitive way to diagnosis endometriosis is through surgery. Many workplaces do not recognise the condition.

This March, Endometriosis UK, is calling for the public, healthcare professionals, policymakers, workplaces, and charities to come together to raise public awareness of the condition, its symptoms, and the impact it has on people’s lives. Throughout this month, the charity is encouraging change by asking those affected by endometriosis to contribute to the APPG on Endometriosis’s survey as part of their ongoing inquiry.

Emma Cox, Chief Executive of Endometriosis UK, said:

“These new statistics show endometriosis cannot afford to be ignored any longer. We need to see stark changes to the system to ensure that all those with endometriosis are able to access the right care at the right time – not many years, sometimes decades, after they first start suffering from symptoms. Society and the NHS must wake-up and understand the devastating impact the condition can have.


"Despite affecting 10% of females from puberty to menopause, endometriosis remains widely unknown, a hidden disease. Alarmingly, awareness is much lower in younger women, where over half do not know what endometriosis is. We all have a role to play in turning this around and taking menstrual and pelvic pain seriously; whether supporting people in the workplace to manage their condition alongside their career; healthcare practitioners supporting diagnosis; teaching menstrual wellbeing in all schools across the UK; or simply raising awareness of the symptoms so that people know if what they are experiencing is “normal” and it is no longer a taboo subject.

This March, important conversations must be had so we can live in a world where menstrual health issues, including endometriosis, are recognised and understood”.

Case study:

Shaunee Williams, a 23 year old midwife from Sheltland said: “It’s shocking that so few young people have heard of endometriosis. From a young age, I normalised the chronic pain I was enduring because I wasn’t taught any different. I was led to believe that painful periods were just a normal part of growing up and being a woman. I missed out on my education because like many others, endometriosis was something I had never heard of. This awareness month – I want everyone, regardless of gender, to understand what is and isn’t normal when it comes to the menstrual cycle. Menstrual health conditions impact not just the sufferer, but those around them too”.

Symptoms of endometriosis include:

  • Pelvic pain
  • Period pain that stops you doing normal activities
  • Pain during or after sex
  • Painful bowel movements
  • Pain when urinating 
  • Difficulty getting pregnant
  • Fatigue

Women with endometriosis may also have heavy periods.

ENDS

Contact us: Faye Farthing, Endometriosis UK Press Manager, 020 7222 2781, communications@endometriosis-uk.org 

Notes to editors

Find out more information on endometriosis here

What you can do:

If you’re suffering from endometriosis and want to raise awareness, tell us your story #endometriosisuk

  • Twitter: @EndometriosisUK
  • Facebook: @endometriosis.uk.org

If you’re a healthcare professional, patient or friends or family of a patient, the APPG on endometriosis have launched an inquiry to find first-hand experiences to advise the Government on what steps need to be taken to ensure people with endometriosis are getting the right care at the right time. Everyone with endometriosis is urged to complete the survey to submit their experience. More information can be found here

Employers: Sign up to the Endometriosis Friendly Employer scheme

GPs: Sign up to take the RCGPs endometriosis e-learning module

Education: Menstrual wellbeing will feature in England’s national curriculum from 2020, empowering women and girls to make informed decisions about their health. We hope that the devolved assemblies will follow suit.

Diagnosis:

A recent study by the APPG on Women’s Health surveyed 2,600 women with endometriosis. 40% of the women had 10 or more doctor's appointments before even receiving a diagnosis. The length of time from first appointment to diagnosis necessitates that women should seek help as soon as symptoms arise.

Endometriosis UK’s advice for better diagnosis:

Sharing as much information as possible during your first appointment will hopefully help speed up your diagnosis. It is recommended to keep a pain and symptoms diary, where you can record and describe pain as it happens, so that your doctor has the fullest picture possible.

About Endometriosis UK

Endometriosis UK is a charity working to improve the lives of people affected by endometriosis and towards a future where it has the least possible impact on those living with the condition

Endometriosis UK believes in the pursuit of a cure for all, whether through prevention or treatment, and a system where everyone currently living with the disease has the best care as a result of new developments in treatment and research.

About the research

The quantitative survey was conducted online by Censuswide in January 2020, with a representative sample of 2,000 general respondents. Censuswide is a full-service research consultancy specialising in consumer and B2B research.