Endometriosis, the Equality Act and you

By Tracey Ward, Head of Business Development & Marketing at Generali UK Employee Benefits

Endometriosis in the workplace seems to be finally shaking off the taboos. And rightly so, considering it affects around 1 in 10 women and girls of reproductive age globally.1 Diagnosis for this often painful and debilitating condition can take, on average, up to 8 years.2 Why? Because it has always been an unwritten rule for women and girls that periods can be painful, it’s not really something you chat about – especially to work colleagues – because you just get on with life the best you can, even if that means glossing over irregular bleeding and debilitating pain.

Against this backdrop, attempting to be an ‘endometriosis-friendly’ workplace is no mean feat. How can employers possibly know who to support, when and how?

It is a challenge. But not an insurmountable one. And considering the prevalence of the condition, plus the fact that it meets the definition of disability as set out by the Equality Act 2010 – not to mention the UK government’s push for employers to better support those with long-term conditions to get work and stay in work3 – it is well worth getting to know more about this topic and helping your line managers understand it too.

This was the message that came from Alec Shelbrooke MP, speaking at the Westminster Hall debate in the Houses of Parliament in February of this year.4

Highlighting the plight of the many women struggling day-to-day with this condition, he called for greater promotion of the charity-run ‘endometriosis-friendly’ employer scheme. This scheme supports organisations to make adjustments for those with endometriosis, in terms of: leadership support; tackling stigma and cultural change; communicating to increase awareness; and promoting the support available for those with the condition.

He also called for employers to better understand the Equality Act 2010, highlighting that because endometriosis falls within the auspices of the Act, employees have the right to ask their employers for reasonable adjustments.

Here we provide a very high-level overview of endometriosis: what it is, symptoms, diagnosis and treatment and how the workplace can help. For more information on all of these aspects – and to learn about Private Medical Insurance (PMI) sector claims experience in this area – please download our podcast hosted with our partner GEB Network and also LifeWorks.

What is endometriosis?

Dr Abby Hyams, a GP for telemedicine provider Medicspot, which partners with LifeWorks, explained that endometriosis is a chronic, debilitating condition that is caused by the endometrial tissue going outside the womb. Endometrial tissue is made up of the hormone-sensitive cells that line the womb. These are normally shed each month, causing menstruation or a period.

In people who suffer from endometriosis, the tissue can go into the pelvis, also up to the bowel and even the lungs.

What are the symptoms?

Dr Hyams says the symptoms vary hugely depending on where the tissue goes, but can typically include: “Pain, severe heavy bleeding, painful sex, fertility issues and, depending on where it has implanted, stomach upsets and lung problems. It can involve time off work with respect to both the physical and psychological impact.”

The prevalence of endometriosis in women with infertility can be as high as 30-50%.2

 The mental health impact

It’s also worth noting that there is lots of evidence now to prove the relationship between pain and mental health issues, adds Paula Allen, Global Leader for Research and Total Wellbeing at LifeWorks.

“Lots of studies show a link between endometriosis and a higher risk of anxiety and depression.”

She adds that the taboo associated with a condition like this, adds another layer on top.

“When you’re dealing with something that you feel you have to deal with alone – something you feel you just have to live with – and you’re not getting help on the physical side, much less the mental health side, that’s tremendously isolating.

“It’s also proven now that if you’re not dealing with the psychological aspect of pain and life disruption, the tension related to that actually makes the pain worse,” says Paula.

Diagnosis & treatment options

As referenced earlier, endometriosis is notoriously difficult to diagnose. “Most commonly, a women would go to her doctor with period pain and get treated symptomatically,” explains Dr Hyams. “If that doesn’t work, or if the GP has any specific concerns, they might get sent for further investigations; ultrasound, for example. This sometimes sees lumps of endometrial tissue in the pelvic region.

“If that’s inconclusive, the individual might get referred to a gynaecologist for MRI and / or a laparoscopy [camera inside the body], which can also be used to treat the condition with laser there and then. But this is a temporary fix. It will come back.

“Meanwhile, hormones can help suppress the endometrial tissue and GnRH [Gonadotrophin-releasing hormone] analogue injections may be used to suppress the cycle. Having the ovaries removed or having a hysterectomy represent last resort solutions when nothing else has helped.”

How can HR / Line Managers help?

  •  Understand how to help the individual do their job; even when they may be struggling with treatment or pain. This is about making reasonable adjustments. “The number one thing here is flexibility; helping people understand how they can work as opposed to feeling they have to make a choice about whether they work or not,” says Paula.
  • Have open discussions around long-term health issues. At a prevalence rate of around 1 in 10, endometriosis is not insignificant against the arguably more well-known chronic conditions such as diabetes. “Line managers can start a conversation if things just don’t feel right,” adds Paula. “Express concern. Be human. Keep details private. And be respectful of how much the individual wants to communicate.”
  • Help people realise they can reach out to get specialist help. Managers should know what support is available. For example, an increasing number of workplaces now offer Telemedicine – or Virtual GP – services, sometimes included with Group Income Protection (GIP) or PMI products, or available standalone (in which case, Generali UK might help GIP clients fund it via our Wellbeing Investment Matching initiative). Telemedicine helps individuals figure out their next steps; as well as providing immediate treatment for the symptoms. It can also provide referrals for onward diagnostics and treatment. Other services such as Employee Assistance Programmes (EAPs) and therapies might also be useful to support the individual with the psychological implications.

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  1. https://www.who.int/news-room/fact-sheets/detail/endometriosis
  2. https://www.endometriosis-uk.org/endometriosis-facts-and-figures
  3. https://www.gov.uk/government/consultations/health-is-everyones-business-proposals-to-reduce-ill-health-related-job-loss/outcome/government-response-health-is-everyones-business
  4. https://hansard.parliament.uk/commons/2022-02-09/debates/663A792C-5B32-4653-88CB-A338C9BB54DB/EndometriosisWorkplaceSupport