Endometriosis: how to offer support in the workplace?

Endometriosis is a gynaecological condition that globally affects 1 in 10 women of reproductive age and those assigned female at birth. [1]

The main symptom is chronic pelvic pain that can have a detrimental impact on most, if not all, areas of someone's life, including work. Persisting stigma, poor understanding, and discomfort discussing menstrual and reproductive health can make it very difficult for those suffering with endometriosis to talk about it with an employer, particularly in male-dominated spaces. It is vital that employers understand this common condition and are well-equipped to support employees in order to build trust, create open and forward-thinking workplaces, and avoid accusations of discrimination and bias.

What is endometriosis?

Endometriosis is a condition where tissue similar to the lining of the uterus starts to grow in other places, such as the ovaries and Fallopian tubes. Despite growing outside of the uterus, this tissue responds to the menstrual cycle each month and bleeds. This blood has no way to escape and this can cause inflammation, pain and the formation of scar tissue [2]. It is a long-term condition and can affect women of any reproductive age.

Symptoms of endometriosis vary both in type and severity. The main symptoms include:

• Pelvic pain which worsens during menstruation.

• Pain during or after sex.

• Severe period pain that prevents you from carrying out daily activities.

• Difficulty conceiving, or infertility.

• Heavy periods.

• Fatigue and tiredness from heavy bleeding and anaemia.

• Painful urination and/or bowel movements during menstruation.

• Other gastrointestinal problems including diarrhoea, constipation, bloating, nausea.

Despite it being a relatively common, and potentially debilitating, condition, investment in research on endometriosis is relatively low compared to conditions such as diabetes and getting a diagnosis is notoriously difficult. The challenges of dealing with physical symptoms alongside difficulties accessing support contribute to high incidences of psychiatric conditions such as depression and anxiety amongst endometriosis sufferers.

Supporting employees with endometriosis

Showing empathy, understanding and a willingness to support employees with endometriosis builds trust within the workplace. As such, employees feel safe to communicate their needs and employers and employees can work together to build a working environment where everybody can thrive.

Beyond a genuine concern for employee wellbeing, practical benefits of supporting employees include improving employee retention which saves on recruitment and training costs. Better understanding and support through flexible working arrangements can help to reduce some of these costs associated with job loss and low productivity.

Employers need to be aware of the stigma surrounding gynaecological health that may create additional barriers to accessing support and could cause someone to feel uncomfortable discussing endometriosis with their employer, particularly with a male employer. If an employee discloses to you that they have endometriosis, the most important step you can take as an employer is to listen and understand the potential impact on someone's physical and mental wellbeing. Set up conversations with your employee to establish what effect endometriosis has on their work, typical symptoms they may face, whether they are worse at certain times of the month, and if there are certain tasks that are more difficult as a result of their symptoms. It is worth noting that emotional support from a female employee in management or HR might help an employee feel more comfortable. From these conversations, you can make suitable adjustments that allow for flexible working arrangements.

Endometriosis in the UK

Endometriosis has been addressed by the UK Parliament in an All Party Parliamentary Group on Endometriosis. The findings of their report are very insightful and useful to people addressing the issue around the world.

Key takeaways from the UK APPG report:

• Around 1.5 million people in the UK are currently living with the condition [3].

• It takes an average of eight years for someone to be diagnosed with endometriosis after symptoms first appear and more than half of women have to visit a GP more than ten times before they are referred to a specialist [4].

• Endometriosis costs the UK economy £8.2 billion a year in treatment, loss of work and healthcare costs [5].

The Equality Act 2010 (EqA) prohibits discrimination on the basis of nine protected characteristics, including sex and disability. The EqA requires employers to make reasonable adjustments for workers with a disability, defined as "a physical or mental impairment which has substantial and long-term adverse effects on a person's ability to carry out normal day-to-day activities". In regards to discrimination on the basis of sex, employers have a duty to be aware of how unconscious bias and stigma may lead to discriminatory or unfair treatment. Endometriosis UK offer the following example:

If an injured rugby playing male employee is allowed months off work and his manager is also male and interested in rugby, it could then be discriminatory treatment to dismiss a female employee with gynaecological problems who has also had time off due to sickness absence.

One common cited challenge faced by those with endometriosis pertains to access to statutory sick pay (SSP). According to SSP guidelines, a 'period of incapacity for work' is defined by four or more consecutive sick days, and therefore there is a 'waiting period' when SSP will not be paid. If an employee is still unfit to work on the fourth qualifying day (i.e. a day when they would normally work) they are entitled to receive SSP for up to 28 weeks. If there are two period where an employee cannot work within an 8-week period then these days will be linked.

The problem this poses for workers with endometriosis is that, although it is a long-term condition, symptoms fluctuate and may not occur for longer than three consecutive days. People with endometriosis may be fine one day and be in severe pain the next. This results in repeated absences where an employee does not qualify for SSP because absences are intermittent. The risk of this may be job loss due to high sickness rates or could be a determining factor preventing someone from progressing in their role. In this instance, it is important for employers to allow for flexible working arrangements with employees who have long-term but intermittent symptoms.

Flexible working arrangements may include reducing hours, reassigning tasks, flexible hours, allowing for home working, or allowing time off for medical appointments. As per the Employment Rights Act 1996, all employees with 26 weeks continuous service are eligible to make one flexible working request in a 12-month period. Employers are not obliged to grant this request but are obliged to consider it.

For a detailed guidance on law and best practice for supporting employees with endometriosis, you can refer to this guidance from Endometriosis UK and this recent publication from the House of Commons.

[1] WHO, Endometriosis Factsheet

[2] For more information on endometriosis visit the NHS website: Endometriosis - NHS

[3], [4], [5] Endometriosis in the UK: time for change, APPG