Endometriosis affects 1 in 10 women and those assigned female at birth in the UK according to Endometriosis UK. Symptoms vary but for many, the condition can have a huge impact on quality of life, physical and mental health. Not surprisingly, this can also affect those experiencing symptoms in the workplace, as well as their employers.
We believe this makes endometriosis an important to topic for all of us to understand. This article has been written to help support Endometriosis Awareness Month across March, as well as providing suggestions for how employers can help those affected.
Endometriosis in numbers
Endometriosis UK say that it’s the second most common gynaecological condition in the UK and over 1.5 million people are currently living with this condition in the UK currently. Research has found that 1 in 6 (just under 17%) with endometriosis will have to leave the workplace.
So, let’s work that through in numbers. According to the ONS, there are around 16 million women aged 16 or over in employment in the UK. This means that just under 17%, or around 2.7 million women could potentially be affected at some point in their working lives and that could mean they leave their work as a result.
And perhaps the number that should register most with employers and government is that, according to Endometriosis UK, endometriosis costs the UK economy £8.2 billion a year in loss of work and healthcare.
What is endometriosis?
According to the NHS, endometriosis is where cells similar to those in the lining of the womb (uterus) grow in other parts of the body. It is often found in areas around the womb, such as the ovaries, fallopian tubes and lining of the pelvis. It also sometimes affects organs, such as the bladder and bowel. Rarely, endometriosis is found in areas outside the pelvis, such as in the chest. Symptoms happen when patches of endometriosis break down and bleed during a period but cannot leave the body.
There are many different theories as to what causes endometriosis. The World Health Organisation list three possibilities as being retrograde menstruation, cellular metaplasia and stem cells. And Endometriosis UK also cover the theories around the causes which you can read here.
The endometriosis awareness problem
There just isn’t the level of awareness surrounding endometriosis that there is for many other conditions. That’s the reality for many living with endometriosis. This means, in practical terms, those who are experiencing the condition not only have to manage the pain and discomfort, they also have to explain this to others. This can be stressful – explaining intimate pain to family, friends and especially employers. When we reflect on the numbers who currently have it, or may do in the future, it’s a staggering lack of awareness.
Symptoms and their impact
Common symptoms will vary from person to person. The typical symptoms are pelvic pain, heavy and or painful periods, pain during or after intercourse, discomfort when urinating, difficulties conceiving and excessive fatigue and tiredness. Another very common symptom is excessive bloating around the menstruation period. As well as the pain experienced, symptoms of endometriosis can cause visits to A&E, poor sleep patterns and increased use of painkillers. Research by Endometriosis UK found that 95% of people with endometriosis say it impacts their wellbeing negatively or very negatively.
One of the main problems faced by those experiencing these symptoms is that they are also very common in many other health conditions. This can cause others to think that those with the symptoms are experiencing bad period pain and not something more serious.
Getting a diagnosis
The plethora of symptoms displayed can also mean that for some, diagnosis can take a long time until referral to a specialist. On average it can take between 8 – 10 years to get a diagnosis from the time of the first visit to the GP. It’s no surprise then that many with endometriosis feel a sense of relief when they are finally diagnosed and that they often describe the whole process as a ‘journey’.
When visiting a GP, it is recommended to have a documented list of the symptoms experienced in as much detail as possible, including the timing of any symptoms in relation to the monthly cycle. The NHS say they may ask to do a physical examination, including a vaginal exam, to check the abdomen and pelvic area.
How can employers help?
Effective support involves a mixture of flexibility, awareness and the empathy of line managers and fellow colleagues. It’s not just the right thing to do in terms of support and care, it will also make for a more productive workplace – indeed as will support for any medical condition.
In many ways, the response should be no different to any other medical condition that severely impacts on the ability to perform in the workplace. However, the symptoms and their impact will affect those with endometriosis in different ways and call for different levels of support.
These may include:
Flexibility in work and absence: Allow employees to adjust their work hours, work from home, or take breaks as needed to manage flare-ups. Enable them to attend medical appointments without affecting their leave.
Education and awareness: Provide training for managers and staff about endometriosis, its symptoms, and how to best support colleagues with the condition. Look out for the signs that may suggest someone is experiencing pain, discomfort or fatigue.
Open communication and empathy: Create an open environment where employees feel comfortable asking for support. This will work best with greater education and awareness and goes deeper into creating an organisational culture where medical conditions can be raised without fear of judgement.
Reasonable adjustments: What can you do to make the workplace environment more practical and kinder? Consider adjustments like locating desks nearer to the toilets, modifying work duties or allowing for a quieter workspace.
Become an Endometriosis Friendly Employer: This scheme, run by Endometriosis UK, is a way for employers to confirm their commitment to developing a work environment and culture that enable employees with endometriosis to thrive at work. Find out more about the support available here.
In conclusion
Endometriosis affects around 1.5 million people and yet can be confused with the symptoms of a range of other health conditions. This makes diagnosis difficult and time consuming, while those affected try to get in with their lives. As a result, working with the symptoms pre and after diagnosis can be challenging. Employers have an opportunity to offer support and awareness and play their part in creating workplace adjustments that may help retain, rather than risk losing talent to this complex condition.
Support Endometriosis Action Month
This year, the theme is ‘Endometriosis Explained’, exploring both how endometriosis must be better understood by the general public and better explained to patients by all healthcare practitioners. Find out how to show your support or share your story here.
Listen to our podcast
Cordell Health have produced a new podcast covering many aspects of endometriosis. This is available to subscribers to our wellbeing service. If you are not signed up to this service and would like to find out more, please contact us on wellbeing@cordellhealth.co.uk
