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The Employers Guide to Endometriosis

One in ten women of child baring age suffer from endometriosis and over 1.5 million people born with female reproductive organs in the UK have this condition. Endometriosis is actually as common in women as diabetes and the condition costs the UK economy £8.2bn a year in treatment, loss of work and healthcare costs. Even with all of those figures, endometriosis is rarely talked about and not on most employers' radars. Chances are, unless you or someone you know has personally suffered from this illness, you may have never heard of it. With this guide, we’d like to tell you more about the disease and how you can support any employees who may suffer with it.

What is endometriosis, anyway?

Endometriosis is closely linked to menstruation, and because we as a society can feel uncomfortable discussing these things, many employers don’t actually know that much about the condition. The fact that it can take women seven to twelve years to get a diagnosis also makes this condition more difficult to support, as sufferers also often have to battle to have their pain understood as well as deal with the condition.

Endometriosis is widely thought of as just an extremely painful period, but it can be so much more than that.

Within the uterus, there is a tissue called endometrium that lines the uterus (or womb) that naturally occurs in a woman's body and changes with their natural menstrual cycle. However, with endometriosis, the endometrium tissue begins to grow in places that aren’t the uterus, including other areas of the pelvis. In some cases the endometrium can spread all over the body. When a woman is on her period this endometrium can swell and cause extreme pain where the endometrium is present.

Endometriosis is not contagious, and you cannot pass it on to anyone else. And while it is a condition that involves abnormal cell growth, it is not a cancer. The abnormal tissue growth from endometriosis is benign and is not cancerous.

Endometriosis is a chronic condition and at the moment there is no cure. Anyone with endometriosis has to learn how to work with their doctors to try treatments that might help reduce the impact of the disease and manage their pain. Currently the only “cure” for the condition is the eventual onset of menopause usually between the ages of 45 and 55. At this point the symptoms tend to settle down.

Women suffering from endometriosis will experience:

  • Extremely painful periods

  • Heavy flow that can soak through ordinary sanitary protection

  • Pain during other activities, including using the toilet

  • Exhaustion and extreme fatigue

  • Migraines

  • Nausea

There are other symptoms, but these are the most common symptoms that might affect someone’s ability to work.

Extreme Pain

As an employer it is important to note that pain associated with endometriosis is EXTREME pain. For many women the pain is so extreme that they can’t sit up, let alone walk across a room. The pain also might not just be within their pelvis, they can have pain in their back, in their legs, and can also suffer from migraines. One of the most common complaints from women suffering from Endometriosis is that people do not believe them when they try to tell them how much pain they are in. Feeling heard and having empathy from their employer around their experience of pain is very important.

Key takeaway: Endometriosis is a chronic condition that can cause recurring, debilitating monthly pain. There is no treatment or cure, and it can last for decades.

How does endometriosis affect employees?

In addition to recurrent pain, endometriosis can have serious impacts on employees’ ability to work. Chronic pain can cause mental distress and exhaustion at the best of times, but people with endometriosis have to also struggle with years of battling just to get a diagnosis. That in itself can be wearing for anyone to go through.

When it comes to work, people with endometriosis might miss a few days of work at the peak of their symptoms. Even when they have recovered from their symptoms, they may be physically, mentally and emotionally exhausted simply from surviving the pain. Crucially, however, you need to keep in mind that this condition varies a lot from person to person, so it may not affect one employee in the same way as another.

It is also worth noting that while an employee may need empathy and support, they should be able to tell you what they can and can’t handle. Most women who have this illness have had it all of their adult life. They will likely have ways of coping and will be able to tell you what level of work they can handle. This condition also should never be a reason a woman cannot move into high levels of responsibility and leadership. There are a huge number of extremely successful women with the condition who have managed to make things work. Just like anyone with a chronic illness, while consideration is needed, it should never be a limitation or cause for discrimination.

Key takeaway: While endometriosis can present differently in different people, you can expect employees with endometriosis to need time off and plenty of empathy. However, do not let this condition influence the career progression or opportunities of your employee and work with them to understand what they can handle.

How can you support your employees with endometriosis?

Having an employee with endometriosis can be complicated, so it may be worth checking out Endometriosis UK’s Employer’s guide to managing endometriosis at work. It goes into much more detail than we will here.

The very short version, however, is that with a simple plan and lots of communication (within the employee’s comfort level, of course), you should be able to make it work with your employee.

When you first meet to discuss how to support your employee with endometriosis, it will be helpful to have a draft of a plan that covers:

  • Who precisely needs to know about the employee’s medical condition

    • Who needs a complete overview

    • Who needs a general overview

    • Who needs to know there is an arrangement

    • Who doesn’t need to know anything

  • A medical fact file that details what the employee needs and why, so people do not underestimate their needs in the future

  • How and where their medical information will be stored

  • A communication plan to avoid rumours and speculation.

Importantly, you will need to incorporate your employee’s feelings and feedback, and you will have to keep in mind that she has a right to not disclose any medical information she doesn’t want to.

Employees with endometriosis may be entitled to statutory sick pay as well. That could depend on their contract terms, the intervals between time off and other factors. Again, if you need more detail, check out Endometriosis UK’s guide.

Finally, you’ll need to consider how to influence the work culture around the support structures you put in place for your employee. Obviously, you can’t call a company-wide meeting and announce everything. But you also need to manage your other employees to ensure that questioning doesn’t become invasive and that doubts don’t turn into resentments.

Key takeaway: Work with your employee with endometriosis to come up with a plan that works for everyone. Then establish a corporate culture that breeds empathy and support, not invasive questions and resentments, amongst the other employees.

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