How to speak to your boss about endometriosis

Gynaecological problems used to be a taboo topic, only spoken about in hushed tones or euphemisms. But with increasing awareness of the impact of conditions like endometriosis, employers are realising these conversations belong in the workplace.

Endometriosis, a disease where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes, affects around 1.5 million women in the UK. It causes chronic pain, heavy and painful periods, extreme fatigue, difficulty passing urine and emptying bowels, fertility issues and depression, among other symptoms.

Despite the huge number of women living with the condition – estimated to be 10% of all women worldwide – there is no cure. On average, it takes more than eight years to get a diagnosis. Women often go undiagnosed or misdiagnosed, which can cause difficulties for employees struggling to explain their pain and absence from work to employers.

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A study of 17,000 women found more than two-thirds of women with endometriosis have missed school or work because of the pain caused by the condition. A staggering 31% of women have missed out on promotions, and one in six have had to quit work entirely. There are huge waiting lists for treatment and according to a 2021 study by Western Sydney University, 15% of women have been fired due to having to manage their endometriosis symptoms.

“Endometriosis can be very painful and unpredictable and it can lead women to feeling too unwell to work at the full capacity or even at all,” says Kate Sang, a professor of gender and employment studies at Heriot Watt University.

“It can take many years to reach a diagnosis and treatment, and women often find themselves unable to secure workplace adjustments without that diagnosis. This can lead to presenteeism, or even sickness absence which may not be necessary if appropriate support were in place,” she says. “Some women may even choose a different career so they can balance their debilitating symptoms with employment, as they cannot access the support they need at work.”

Talking to your boss about endometriosis

Normalising conversations about health at work is crucial, but endometriosis can be a tough subject to broach with an employer.

Lauren Chiren, CEO and founder of Women of a Certain Stage, which provides advice and support for women experiencing menstrual problems or menopause, says it’s important to be open and honest. Don’t downplay your pain or your needs – and focus on the facts of your condition.

“Schedule a private meeting to explain your condition and how it impacts your work,” she says. “Prepare by creating a list of symptoms and what helps you manage them. Approach the conversation with solutions in mind to make work easier while maintaining productivity. Bring suggestions for accommodations, such as flexible hours, work-from-home options, or time off for medical appointments.”

It can be helpful to send factual information via email too, like pages from the Endometriosis UK website or Dr Jackie Maybin's website HOPE, before or after the discussion. You could even offer to help your employer draw up guidelines for supporting workers, including regular check-ins to discuss what is and isn’t working.

If you’re comfortable doing so, you could mention that many businesses have committed to be an Endometriosis Friendly Employer. In East Yorkshire, a work charter is being created to help support staff who suffer with endometriosis where they can access free support.

“Also, consider finding an ally at work,” says Chiren. “They can potentially help you prepare to speak to your boss and even sit in on the meetings with them. You may also consider speaking to HR if you don’t feel comfortable speaking to your boss directly.”

It's important to remember that you don’t need an official diagnosis to get support at work. Sang adds that endometriosis meets the threshold for disability under the Equality Act 2010, so it's likely you are entitled to support.

“Women may find it easier to go through a union rep or workplace occupational health advisor to negotiate adjustments with their line manager,” Sang says.

How employers can support workers with endometriosis

It’s important for employers to be educated about conditions like endometriosis and to create an environment where these topics can be openly discussed.

“They can provide flexible work arrangements like working from home, offer additional sick leave, and ensure a supportive work culture where employees feel comfortable discussing their health,” says Chiren. “Offering access to health programmes and mental health resources can also help, as well as educating management about the condition to ensure understanding and empathy.”

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Recognising that endometriosis isn’t predictable is also essential. “Don't ask a woman to predict what days of the month she will be in pain,” says Sang. “Allow the use of hot water bottles and other comforting items at work and ensure women are able to take flexitime to see a doctor,” she says.

“Larger organisations may be able to facilitate an appointment with a specialist via their occupational health schemes. But the main piece of advice is to believe women when they tell you they are struggling and proactively put workplace adjustments in place.”

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