Endometriosis — which affects one in ten women (and those assigned female at birth) — is estimated to cost the UK economy £8.2bn a year in treatment, loss of work and healthcare costs.
As with many reproductive health issues, many suffering from the condition continue working, take little time off and hide pain from their managers and colleagues. This can have a significant emotional, mental and physical toll on their health and wellbeing.
Here, Samantha Jackson and Heena Kapadi explore the true impact of this hidden and often misunderstood condition on both employees and employers.
Endometriosis — why it matters
Endometriosis isn’t particularly well known or understood and remains without a cure.
It’s an often-painful condition where tissue — similar to the lining of the womb — starts to grow in other places in the body, such as the ovaries, fallopian tubes, bowel and lungs. This can affect women at any age.
55% of those grappling with endometriosis find themselves frequently absent from work — a statistic that should make organisations sit up and take notice.
Individuals will often present at their GP surgery, A&E or other medical centres with severe symptoms. However, the condition — which can result in severe pain and affect people long-term — often goes undiagnosed or is misdiagnosed.
This can cause difficulties for employees who may not be able to identify the cause of their symptoms and struggle to explain their pain and absence from work to employers.
Reports suggest that a staggering 27% of women with endometriosis have missed out on promotions, while 54% were subject to income reductions. Alarmingly, one in six women with endometriosis decide to relinquish their careers altogether. This loss of talent can be extremely detrimental and, as all organisations know, staff turnover is costly. Replacing members of staff translates to a staggering cost of £30,614 per employee, including lost productivity in the notice, recruitment, training and induction periods .
Yet this isn't just about numbers — it's about untapped potential. Employers are missing out on exceptional talent due to a lack of understanding about endometriosis and its repercussions.
The good news is that these consequences don't need to be so severe. By fostering a workplace environment that accommodates and supports individuals with endometriosis, employers can reduce absenteeism, retain valuable team members, boost overall productivity and avoid hefty costs associated with increased staff turnover.
Common misconceptions
The impact of endometriosis varies from person to person. Some women are severely affected while others may experience no symptoms. While everyone is impacted differently, the symptoms of endometriosis can include chronic pelvic and/or back pain, fatigue, heavy and prolonged bleeding, nausea, difficulty passing urine and emptying bowels, fertility issues and depression.
It has been suggested that pregnancy and/or hysterectomy will alleviate the symptoms of endometriosis. While there may be some benefits to these options, they aren’t cures — and employers should be extremely careful when drawing their own conclusions. Instead, medical advice should be sought to understand the position of each individual.
Given that other organs in the body can also be affected, the condition can lead to further complications. For example, deep infiltrating endometriosis can require the removal of organs such as the fallopian tubes and part of the bowel.
Legal protections
While endometriosis itself isn’t an automatic disability, it could satisfy the definition of a ‘disability’ under the Equality Act 2010. As with many disabilities, the impact of the condition needs to be assessed on an individual basis — taking into account the effects it has on any given individual.
For the purposes of protection under the Equality Act 2010, a person is disabled if they have a physical or mental impairment that has a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities. For an impairment to be deemed ‘long-term’, it must have lasted (or be likely to last) for at least 12 months.
Endometriosis and its effects are sometimes referred to as ‘women’s problems’. If this terminology is used in the workplace, it could potentially lead to claims for harassment related to sex under the Equality Act 2010.
Legal risks for employers
Given the potential for endometriosis to be a disability, employers need to be alive to the risk of claims for discrimination — the ambit of which can be far reaching and include the duty to make reasonable adjustments.
In all cases where an employer has discriminated against an individual, the employee will be able to bring a claim and seek compensation in the employment tribunal. Awards for successful discrimination claims are potentially uncapped, which means that employers could be at risk of paying out large sums of money.
Matters like this are extremely fact-specific and must be considered on a case-by-case basis. Awareness of this condition and how Tribunals assess disability needs to be borne in mind by employers when employees present with health issues without a clear diagnosis.
What can employers do? Six practical tips
National charity Endometriosis UK found that endometriosis-friendly employers have noted improvements in “employee wellbeing, productivity and performance, employee engagement and morale” as a result of the additional assistance provided.
Our own Amy Talvet has spoken about the support she received:
“For 15 years, I was told I was just experiencing ‘painful periods’. In 2017, I was diagnosed with endometriosis by laparoscopy. I spent the days around my period curled up in horrific pain, vomiting and on occasions, fainting. There is no known cure for endometriosis. My symptoms are managed by hormonal contraceptives, pain relief and surgery to cut away the tissue (which after time can grow back). Along with the pain, my symptoms consist of fertility issues and recurring ovarian cysts.
Dealing with endometriosis in the workplace can be extremely difficult. I count myself lucky that I can openly discuss women’s health issues with my line manager. This allows my team to give me the critical support I need, when I need it.”
Employers looking to do more about endometriosis may wish to consider these six practical tips:
- Provide training and raise awareness — the more that employers know about endometriosis, the better they will understand what effect this can have on employees and the support they may need — often on a long-term basis. Endometriosis UK offers bespoke training.
- Encourage a culture of openness — by tackling the stigma around reproductive health issues, employees will have more confidence to engage in conversations with their manager or HR team.
- Implement reasonable adjustments — where employers are aware (or could be expected to know) that an employee has endometriosis, they may have a legal duty to make reasonable adjustments, such as:
- allowing time off for medical appointments without using annual leave.
- considering endometriosis-related absences as separate to other sicknesses
- excluding endometriosis-related absences when considering (for example) any entitlement to a bonus or within the context of promotion criteria
- flexibility on working hours such as start and end times, as well as taking breaks
- flexibility on hybrid or homeworking arrangements
- providing special equipment
- changing duties and responsibilities
- amending targets
- providing access to hot water bottles and places to lie down.
- Offer support services — this can be as easy as directing staff to external sites or organisations for information and support, such as Endometriosis UK, but might also include access to occupational health professionals who may be able to suggest appropriate reasonable adjustments.
- Conduct regular check-ins — to help monitor employees’ wellbeing, ensure they feel supported and consider whether anything more can be done.
- Join the Endometriosis Friendly Employer scheme — this is a way for employers to affirm their commitments to developing work environments that enable employees with endometriosis to thrive at work.
Talk to us
We hope to play a small part in raising awareness and understanding of why employers — particularly those in HR and management roles — need to educate themselves about endometriosis.
It’s easy to provide support for your people and adopting flexible and forward-thinking policies can dramatically improve employee wellbeing and your working culture.
The broader impact of the condition means that it can impact your bottom-line when these issues aren’t addressed. These repercussions can be dramatically reduced by taking the appropriate steps.
If you need help to support staff affected by reproductive health issues, implement new policies and procedures or on a specific employee matter, talk to our employment law experts by completing our contact form below.
