Endometriosis Information and Resources
What is endometriosis?
Typically affecting women between puberty and the menopause, endometriosis is a long-term, chronic condition in which tissue similar to the lining of the womb grows in other parts of the body, including the fallopian tubes and ovaries. In the UK, it is the second most common gynaecological condition, with around 10% of women affected.
Not all women with endometriosis experience all of the below symptoms, and while some can suffer severely, some may not have any noticeable symptoms at all. Common daily symptoms include:
- pain in the lower abdomen or back (or pelvic pain)
- fatigue
- intense period pain that prevents normal activity
- pain when passing urine or faeces during periods
- nausea, constipation or diarrhoea during periods
- blood in urine or faeces during periods
- difficulty getting pregnant
Another common symptom of endometriosis is heavy bleeding during periods, which could mean the need to use multiple pads or tampons, visiting the toilet often, or bleeding though to clothing.
Recent surveys show that:
- 40% of women with endometriosis are worried it could threaten their job security
- 27% report they have missed out on a promotion
- 55% say they need time off work “often” or “very often”
- 54% have said that endometriosis has had a negative impact on their income
- 87% say their long-term financial situation has been affected by the condition
- 17% of women with endometriosis leave work permanently.
Despite the condition affecting 1 in 10 women in the UK, research carried out by EndometriosisUK showed that 54% of people as a whole do not know what endometriosis is, increasing to 74% of men.
There is therefore a clear need for increased education and awareness about this condition. The more an employer knows about endometriosis, the better they will be able to understand what effect this can have on employees and the support they may need. Importantly, it will also help them understand that such employees will likely need to be supported on a long-term basis
Under UK employment law, employers have a duty to make reasonable adjustments to support workers with a disability or long-term health condition. Endometriosis is considered a disability under the Equality Act 2010 if it has a substantial and long-term adverse effect on a person’s ability to carry out normal day-to-day activities.
Employers can play a crucial role in supporting employees with endometriosis by implementing reasonable adjustments tailored to their needs. These adjustments can vary widely due to the individual nature of the condition, but some common strategies can be applied across different work environments, including office settings, retail, and remote work.
Some examples for an office setting include:
- Flexible Working Hours: Allowing employees to start later or finish earlier can help them manage their symptoms more effectively
- Remote or Hybrid Working Options: Providing the option to work from home can significantly benefit those with endometriosis, reducing the need for commuting and allowing for a more comfortable working environment
- Special Equipment: Ergonomic office equipment, such as adjustable desks or chairs, can help reduce discomfort
- Access to a Quiet Rest Area: A place where employees can take a break and use a hot water bottle if needed can be beneficial
In a retail setting, where standing for long periods is often required, reasonable adjustments could include:
- Frequent Breaks: Allowing more frequent breaks for rest and medication can help manage pain and fatigue
- Shift Adjustments: Modifying shift patterns to shorter shifts or allowing for more flexibility in scheduling can accommodate varying energy levels
- Provision of a Seating Option: Where possible, providing a stool or chair for use during quieter periods can help
For remote work environments, adjustments are more focused on flexibility and communication:
- Flexible Scheduling: Allowing employees to work during hours when they feel most productive can help accommodate fluctuating symptoms.
- Regular Check-ins: Maintaining open lines of communication can help managers stay informed about their employees’ needs and make further adjustments as necessary
General Adjustments Across All Environments
- Medical Appointment Leave: Offering time off for medical appointments without using annual leave is crucial
- Awareness and Training: Educating managers and co-workers about endometriosis can foster a supportive work culture. This includes training on how to offer support and understanding the impact of the condition
- Policy Adjustments: Developing or revising policies to specifically address chronic conditions like endometriosis can ensure consistent support.
Some examples of reasonable adjustments that can help include:
- regular 20 min rest breaks
- pacing of tasks to avoid burn out
- reducing workloads /- planning ahead for project timeframes / deadlines around flare up or monthly cycles
- modifications of work tasks should be in consultation with the employee
- reducing exposure to high stress situations
- providing greater support like putting instructions in writing
- modifying the work area, for example noise control, light / temperature adjustments
- Access to restroom facilities – consider this with employees who may work in the construction industry, traffic control or mining – providing portable, clean and safe toilets may be a solution
Example of an Employer Policy on Endometriosis
Objective
To support employees suffering from endometriosis by creating an inclusive, understanding, and flexible work environment that acknowledges their unique needs, thereby enhancing their well-being, engagement, and productivity.
Scope
This policy applies to all employees within the organization, with a focus on providing support to those diagnosed with endometriosis or experiencing symptoms associated with the condition.
Policy Details
Awareness and Education
- Conduct awareness programs to educate all employees about endometriosis, its impact on individuals, and the importance of a supportive work environment.
- Offer flexible working hours and the option to work from home to accommodate medical appointments, manage symptoms, and ensure comfort.
- Consider job sharing, part-time roles, or modified duties as necessary to support employees’ health and work-life balance.
Workplace Accommodations
- Allow for necessary workplace accommodations, such as more frequent breaks, access to a private rest area, and permission to use comfort aids like hot water bottles.
- Provide ergonomic workstations or equipment to help reduce discomfort for employees standing or sitting for long periods.
- Provide ergonomic workstations or equipment to help reduce discomfort for employees standing or sitting for long periods.
Health and Well-being Support
- Facilitate access to counselling and support groups for employees dealing with endometriosis, recognizing the mental and emotional impact of chronic conditions
- Offer health benefits that cover treatments and therapies related to managing endometriosis, including surgical options, if applicable.
Communication and Support
- Encourage open communication between employees and their managers about their needs and accommodations without fear of stigma or discrimination
- Where possible appoint Endometriosis Champions within the workplace to advocate for and support affected employees, fostering a culture of understanding and inclusion.
Review and Feedback
- Regularly review the effectiveness of the policy and accommodations provided, seeking feedback from employees to ensure their needs are being met
- Update the policy as needed to reflect new insights, employee feedback, and advancements in the understanding and treatment of endometriosis.
Links for more information on endometriosis
https://www.endometriosis-uk.org
https://endometriosis.net/living/work-accommodations
https://www.endofound.org/a-guide-to-supporting-your-employee-with-endometriosis
https://www.elanzawellness.com/post/endometriosis-in-the-workplace-navigating-challenges
https://www.myendometriosisteam.com/resources/balancing-work-and-endometriosis
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