The Last Workplace Taboo: Women's Experiences Of Endometriosis, Adenomyosis and Polycystic Ovary Syndrome
One in 10 women suffer from endometriosis, adenomyosis and polycystic ovary syndrome in the UK and many experience intense pain while trying to do their jobs.
7 min read
Endometriosis, adenomyosis and polycystic ovary syndrome are painful conditions that affect one in 10 women. For many, the workplace remains a challenging environment to be upfront about their illness in. Kate Proctor, who has adenomyosis, looks at women’s experiences and what needs to change.
I guess I looked drunk. Slumped on a bench at Covent Garden underground station, half-conscious at 6.30am on a work day. It was a train driver who eventually called for assistance, after hundreds of passengers had filed past. I was dripping with sweat and unable to walk, let alone say what was wrong.
A station staff member took me to a private room; I can barely remember walking there, the pain was so excruciating. He said he’d call an ambulance – but I was finally able to explain through gritted teeth that it was “just” my period. Embarrassed, he said: “Oh, I’ve got sisters and stuff, I know how it is.”
When he kindly called my – male – boss to tell him what was happening, I was mortified. “Time of the month and things,” he mumbled into the phone. My former editor was very understanding, but when I returned to work I couldn’t help but feel self-conscious.
This pattern of intense pain as I start my period has been a feature of my life since I was a teenager; not every time is as painful and sometimes it can be managed with a prescription of mefenamic acid. But on those occasions when my body isn’t playing ball, pain relief makes no difference and I know I’m going to suffer around two hours of debilitating pain.
It’s happened in front of friends and boyfriends, leaving me humiliated. Crawling across the floor to get to the bathroom to be sick from the pain… well, your dignity has left the building. The worst attack was during lockdown, and I even considered calling an ambulance. That’s when I thought: this is getting dangerous.
I put a bit of pressure on my GP to get answers and, luckily for me, she agreed this wasn’t normal period pain. The scan showed I have adenomyosis – often described as endometriosis’ evil twin. While the better known endometriosis is a condition where endometrial tissue grows outside the uterus and causes severe pelvic pain, adenomyosis is where the tissue that normally lines the uterus grows into the muscular wall that surrounds it. After trial and error, I am now on the right medication – in the form of the contraceptive pill. I get average pain and, frankly, it feels like a miracle.
Extremely painful and debilitating conditions that affect the womb and ovaries, and in turn fertility, are incredibly common. It is thought that one in 10 women suffers from endometriosis or adenomyosis over the course of their reproductive cycle. Another one in 10 may have polycystic ovary syndrome (PCOS), where they can have irregular periods and trouble conceiving, although many won’t have any symptoms.
Awareness has grown tremendously, and the All-Party Parliamentary Group on Endometriosis, previously chaired by the late Sir David Amess – a real champion for women’s health – has seen a shift in understanding.
Labour MP Emma Hardy, co-chair of the APPG who got involved after hearing the case of one of her constituents, says one of its main aims for 2022 is to raise awareness in the workplace.
“We did a big piece of research on lived experiences of people with endometriosis – 13,000 responses – and one of the issues that came up was it’s a condition that fluctuates,” Hardy says.
“Some days you’re fine, other days it’s incredibly painful, so… we do need to talk to businesses about sickness policies. You could look at being able to let someone take those hours at home, rather than them having to have a whole day off. They can still be an excellent employee, they just have a different sickness rate to someone else.
“It’s important, because when we gathered our evidence we heard people lost jobs because sickness rates were so high, and they’ve been overlooked for promotion.”
Another adenomyosis sufferer, Aylin, who has a far more severe condition than I do, with pain throughout the month, fears that when she finishes her current teacher training course, she will struggle to explain that she may need to be absent sometimes.
“When I am too unwell to work, having to explain that my uterus is on fire, I have a fever, can’t stop throwing up and feel like I need to pee all the time, feels quite embarrassing to tell your line manager or colleagues.
“Previously I’ve been able to work from home, but in a job as a teacher you worry whether you’ll be able to cope with the pain or whether you’ll be off sick a lot and whether your manager will see you as being unfit for your work.”
Laura, who is in her 20s and works in central London, says the pain she gets from PCOS means she has had to miss work.
“It was really embarrassing to discuss this with my boss, a middle-aged man. I never told him exactly what was going on, even when I was having to miss work for surgery for it,” she says.
Anna, a 25-year-old charity support worker from Wales, says her diagnosis of endometriosis took seven years. She has stayed on the contraceptive pill (which can regulate the pain) even though she doesn’t want to, so she can lessen the number of sick days she needs to take when she gets her period.
She says she wishes for a more open culture around periods, which in turn could lead to greater investment in research, rather than what she feels is a reliance on prescriptions of the pill.
“It’s crazy to me that these women’s health issues aren’t getting much more focus and resources. But when the people dealing with them are taught by society that it’s something not to talk about… it’s not a surprise they aren’t something anyone else cares to focus on either.”
It does feel as though things are slowly changing. I was buoyed to see Endometriosis UK has guidance for employers on its website about sick leave, as well as advice for those with gynaecological or menstrual conditions to explain with dignity what support they need, including pointers on how to start conversations.
“We have an Endometriosis Friendly Employers scheme which provides guidance for employers on supporting employees with endometriosis, and want to see lots more employers take part,” a spokesperson says.
“There can be what we consider discriminatory practices around sick leave that penalises those with endometriosis where symptoms may be intermittent through the year resulting in occasional sick days, rather than a period of sick leave taken at one time.”
Last autumn there was also a notable moment of people power on the subject, when a public petition to increase funding for research into endometriosis and PCOS reached 100,000 signatories and as a result was debated in Westminster Hall. To see male MPs taking part lifted my spirits. Awareness of adenomyosis is still poor, though, which is in part why I decided to share my experience.
This spring the government is due to release its first-ever women’s health strategy for England, providing an opportunity for additional support and treatment, and a chance to discuss more widely how to provide help in the workplace.
In addition, the Department of Health and Social Care has recently allocated £2m to the National Institute for Health Research (NIHR) to investigate how to manage a condition called peritoneal endometriosis, and the NIHR has funded £6.6m for PCOS research.
But it seems clear that too many women still feel they can’t discuss painful periods, and more serious conditions, openly with their employers. If there’s one thing politicians in Westminster can push for this year, it’s for the businesses they come across to become an Endometriosis Friendly Employer. It would not only help the one in 10 women who suffer, but also normalise women’s experiences of other conditions so that it’s not down to the luck of encountering a Tube worker who “had sisters,” or having an understanding boss. These discussions do take people out of their comfort zones, and this article hasn’t been easy to write, but it’s about time the workplace caught up.
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