Endometriosis affects one-in-10 women across the country, and it can take, on average, eight years for a diagnosis. Given that general awareness of this chronic pain disease is so low, and diagnoses take so long, this number could be even higher.
That means it is highly likely that someone within your organisation is living with endometriosis – even if they aren’t aware of it themselves.
The theme of 2024’s Endometriosis Action Month is ‘Could it be endometriosis?’, we spoke to Heidi Yule, Head of Development at Endometriosis UK, to find out more about endometriosis, how it impacts women at work, and the support employers can offer.
Watch the full interview here:
Could it be endometriosis?
The theme of this year’s Endometriosis Action Month is ‘Could it be endometriosis?’, because there are women who are suffering and don’t understand why, which makes it hard to communicate the extent of what they’re dealing with.
Heidi Yule, Head of Development at Endometriosis UK asserts: “We just really want to raise public awareness and ensure that anybody suffering with the symptoms of endometriosis understands that it could be endometriosis. We really want to bring that diagnosis time down.”
If they do know, it can still be hard to find empathy or understanding from employers. With menstrual health still a taboo subject at work, it can be embarrassing to talk about for many.
What is endometriosis?
General awareness is low, and diagnosis time is high – this means many have never heard of endometriosis, even if they have it themselves. In order to provide support, both employers and people with endometriosis need to understand what it is and the effects of the condition.
Heidi Yule defined it as a chronic pain disease and told Reed how it works: “It's when you have cells similar to the ones that are found in the lining of the womb growing elsewhere, outside the womb. Usually, these cells still tend to grow within the pelvis, but they have been known to grow in the lungs or even as far as the eyes, in rare cases.
“And just like the cells found in the lining of the womb that respond to the hormonal cycle and break down and bleed, these cells also respond to the hormonal cycle, break down and bleed.
“But unlike the cells that you would find in the womb, that leave the body as a period, this blood has nowhere to go. So, the blood forms these sticky adhesions and eventually scar tissue, which can cause significant pain to the person that has it. But it can and it's quite common for it to be found on other organs. So, the bowel, the bladder, the rectum, and over time, the disease progresses with each hormonal cycle.”
Pain and other symptoms
Endometriosis is different for everyone. Although the pain can be managed and the tissue can be removed through surgery, there is no cure. It can recur once or twice a month, either during your period, or ovulation, but if it has progressed enough to scar, it can be continuous.
Endometriosis is different for everyone. Although sometimes the pain can be managed and the endometriosis removed through surgery, there is no cure. Endometriosis responds to the hormonal cycle meaning symptoms are usually at their worst during the time of someone’s period or ovulation. In more severe cases where the disease progressed enough to scar, it can be continuous.
Heidi stated: “Most symptoms of endometriosis include painful periods. When we say ‘painful periods’, of course, it's common to suffer from some discomfort during your period, but this is pain that interferes with your daily life and activities, and it can be so severe that it can cause vomiting, for somebody to pass out, or for somebody to be really debilitated by the pain.
“And the other thing with endometriosis, is that the level of pain that somebody feels might not necessarily correspond to the severity of the disease. It all depends on where that endometriosis is. If it's attached itself to a nerve, it might be painful, even though the disease isn't what we consider a deep, infiltrating disease.”
How does this impact employees or jobseekers?
“People don't want to be seen as flaky or unreliable, so it would be unlikely to really want to discuss that, certainly at interview stage or probation stage or in a new job.
“Unfortunately, at Endometriosis UK, we hear from a lot of women who’ve had really negative experiences at work. So, if you've had a bad experience in the past, it's probably going to cause you quite a bit of stress and anxiety when it comes to looking for a new job,” according to Heidi.
She suggests that women with endometriosis are looking for their employers to be flexible, offer hybrid working policies, additional benefits such as healthcare, or occupational therapy, a robust HR team, and they will search for their involvement in any schemes championing women’s health. They also want employers to demonstrate they can create an open culture where women feel comfortable talking about menstrual health.
What support can employers offer to those with endometriosis?
Heidi provided valuable advice for employers on how to ensure your employees can feel well supported. Listening and a willingness to understand is especially sought after, especially as some women have had years of waiting for a diagnosis and sometimes being misdiagnosed or dismissed as having something less severe.
She said: “It can be really reassuring if you have a supportive manager. They don't always have to know all the answers, but that willingness to [listen and] work together and to work out how to support someone with endometriosis is trying a range of things.”
Support without a diagnosis
Heidi also said employers must ensure their HR policies are up to date and inclusive for all. Businesses should foster an open culture that is brave enough to tackle the taboo and stigma that comes with talking about menstrual health conditions at work.
“Workplaces can play a really positive role in trying to help bring down that [eight-year average] diagnosis time.” suggests Heidi.
HR and line managers can look out for patterns; “if you have somebody that's taking time off work on a monthly basis for abdominal pain or severe period pain, they might not have heard of endometriosis, but you might be able to say, as a HR person or as a line manager, ‘There’s a pattern to this. Have you considered could it be endometriosis?’”
Heidi suggests that: “Signposting to the NHS can be a positive thing, and signposting to [Endometriosis UK’s] services. We've got loads of information and we do a lot to support and guide people through that period where they don't have the diagnosis. There's lots of things on our website to help with that. Or signposting them to the NHS.”
The business case for support
Heidi shared her final thoughts on what employers should know about why it’s so important to support women with endometriosis in the workplace:
“By demonstrating that commitment to women's health at work, you become a more attractive and inclusive employer. It can help improve retention and promote and that kind of culture of openness and equality. And most importantly, support those with endometriosis at work so they can thrive in their careers and not be held back to be supported properly.”
Become an endometriosis friendly employer
Through Endometriosis UK’s endometriosis-friendly employer scheme, businesses of all shapes and sizes can pledge to become endometriosis friendly.
Heidi says: “We’ll guide them through that process and offer training and resources. We have roundtables and events, and opportunities for organisations to connect with other organisations and share knowledge.
“We also do ‘menstrual health and the workplace’ work, where we don't just focus on endometriosis, we look at other menstrual conditions [including PCOS and fibroids] and create resources and put on events and webinars.”
Find out more about endometriosis, and the support available, through Endometriosis UK.
If you’re looking for a talented professional to join your inclusive organisation, or a new opportunity, contact your nearest Reed office.
