What is endometriosis: Q&A with Endometriosis UK

To mark Endometriosis Awareness Month, we sat down with the charity Endometriosis UK to discuss the invisible illness that affects 1.5 million women in the UK.   

• What is endometriosis?

Endometriosis is a menstrual health condition affecting one in ten women and those assigned female at birth. The disease occurs when cells similar to those lining the womb are found elsewhere in the body. These cells behave like those in the womb building up, breaking down and bleeding, but unlike a period, the blood has nowhere to go. This can cause inflammation, pain and the development of scar tissue.

• What are the symptoms of endometriosis? 

Common signs and symptoms of endometriosis include painful periods, chronic pelvic pain, pain on urination and bowel movements, fatigue and difficulties getting pregnant.

• Why are these symptoms often ignored?

Symptoms are normalised as being “part of being a woman” or “just a bad period” and pain is dismissed as “you may have a low pain threshold”.

• In the UK it takes approximately eight years to get a diagnosis of endometriosis. Why does it take so long?

There are a number of barriers that arise that contribute to this. Firstly, awareness of endometriosis is still too low, although improving, so someone with symptoms may not realise they have a medical problem and they don’t seek help.

Secondly, when symptoms are discussed with friends and family, they too might lack awareness and normalise the symptoms as “just a bad period”.

Thirdly, when someone with symptoms of endometriosis goes to their GP, they may have their pain and symptoms dismissed “you must have a low pain threshold” or not taken seriously.

In addition, some of the symptoms for endometriosis also occur with other conditions, so for example we know of women who were initially wrongly diagnosed with IBS (Irritable Bowel Syndrome) and later had endometriosis diagnosed.

Endometriosis UK has information on its website about getting diagnosed and advice on how to prepare for going to see your GP when you think you may have endometriosis.

• How does the lack of research contribute to the hidden suffering of millions of women?

The historical lack of research into endometriosis means the cause has not yet been identified and there is no cure. There are treatments to manage the symptoms of endometriosis including hormonal treatment, surgery and painkillers, but unfortunately, they don’t work for everyone with the condition. Greater investment in research could help identify the cause and develop better treatments and hopefully one day a cure.

• What does Endometriosis UK do?

With the help of our volunteers, we raise awareness of endometriosis, and the issues that affect those living with it, among healthcare professionals, those with endometriosis and their families and colleagues, the public and the media. By developing clear policies, Endometriosis UK aims to influence national governments and healthcare providers to achieve the standards of care and treatment that those with endometriosis deserve.

• How can the government help?

In the UK, there is national guidance on the diagnosis and management of endometriosis from the National Institute of Health and Care Excellence (NICE). All UK governments should ensure that NICE guidance is fully implemented in their respective healthcare systems and that steps are taken to measure and meet the demand for endometriosis care.

In Scotland, a women’s health plan was published last year which commits to doing this and work is underway on implementing the commitments made. In England, a women’s health strategy is currently in development and Endometriosis UK has asked the Department of Health and Social Care to commit to doing this.

The Welsh Government has just begun to develop a women’s health plan for  Wales and Endometriosis UK has been involved in a coalition of charities which is preparing a proposal women’s health which addresses endometriosis and will be presented to the Welsh Government later this year.

During the recent Endometriosis Action Month, Endometriosis UK launched a campaign to improve endometriosis care in the UK by asking for the NICE guideline on endometriosis diagnosis and management to be reviewed and updated. This is because, while the guideline was a step forward in endometriosis care, there are some important gaps including access to pain management, endometriosis outside the pelvic cavity and mental health support.

A new European (ESHRE) guideline on endometriosis also came out in February 2022 which includes new recommendations not covered by the NICE guideline, which was published in 2017.

For more information and support visit Endometriosis UK.