Women say they are being overlooked for promotions and accused of faking pain to get sick leave in the workplace.
Women with endometriosis are demanding workplace reforms to support the 1.5 million people in the UK living with the reproductive health condition.
Those with the condition say change is urgently needed as they are being overlooked for promotions, and the disease is not taken seriously by employers. Some employees have even been accused of faking pain because the disease can take years to be diagnosed, leaving those affected unable to justify time off.
“Whenever I needed time off, my employers would accuse me of faking being sick,” said 39-year-old Amy Dowzell who was diagnosed with endometriosis after a 22-year wait. “That would mean I would have to leave the workplace, so any opportunities I wanted to pursue were cut short, or I was overlooked for promotions.”
Katy Parr, 35, was diagnosed a decade after her symptoms first showed up. She said she felt awful taking leave and could only tell her employers that she was having painful periods.
“My career has always been a driving force for me so I used to beat myself up quite badly if I had to take time off work. Because of that, I would take spare clothes, painkillers and hot water bottles to the office. People would often ask, ‘Have you changed your clothes in the lunch break?’ They would think it quite strange that I was wearing different clothes in the afternoon than I was in the morning,” she said.
Both Dowzell and Parr work at endometriosis-friendly accredited employer Admiral Insurance and argue that flexible working hours, psychological support, easy access to menstrual products and awareness around endometriosis can assist women in the workplace.
“It is important that women feel that they have people they can talk to and reach out to. It’s also very important to give employees ways of accessing more medical services that aren’t through the NHS,” Dowzell said.
Endometriosis is a chronic condition in which tissue similar to that found in the uterus grows in other areas of the body. Symptoms can be life impacting, including severe pain, heavy menstrual bleeding, painful sex and infertility.
One in 10 women of reproductive age suffer from endometriosis in the UK. In Wales, this is around 150,000 people.
A report published earlier this month by the Women and Equalities Committee of the House of Commons highlighted that women risk losing their jobs in the absence of an endometriosis diagnosis, which can take up to eight years in England and 10 years in Wales. Before a diagnosis, women struggle to prove their need for adjustments and entitlements such as flexible working and recurrent sick leave.
Another report, released in 2020, by the All-Party Parliamentary Group on Endometriosis found that nearly 40% of women with endometriosis were concerned about losing their jobs and had a reduced income. It further revealed that eight in 10 women were worried about their future.
The UK government estimates that neglecting women’s health in the workplace costs the economy £20 billion a year.
Parr said pursuing has been challenging, but dealing with endometriosis has given her resilience, and with some changes, the disease should not hold back women from pursuing their career of choice.
“I have had a hysterectomy. I am 35. I don’t have any children. So, I am at a very different stage in my life than my friends who are starting their families and are not navigating through menopause. While it is not the nicest disease to deal with but if you take all the good things from it, it can teach you resilience and strength. If you harness all those things, it shouldn’t hold you back from pursuing your career.”