‘Suffering in silence’
How employers can support employees living with endometriosis
Accessing healthcare and understanding for this painful, often under-diagnosed condition can be challenging – especially in the workplace. But it doesn’t have to be that way.
Millions of women around the world suffer from endometriosis, which has been labelled the ‘missed disease’ because of its under-diagnosis.1 But despite endometriosis being surprisingly common, many sufferers still struggle to get the care and understanding they need often meaning this painful condition can adversely affect their careers and, on occasion, their productivity at work.
In the wake of Endometriosis Awareness Month 2024 in March, we explore how multinationals can support their people to access endometriosis care via both their employee benefits (EB) programmes and through workplace environment and cultural change.
Two MAXIS team-members who live with endometriosis and are keen to break the silence in the workplace about the condition, have decided to share their stories.
What is endometriosis?
Endometriosis is a long-term condition which affects an estimated one in ten girls and women worldwide. It occurs when tissue similar to uterus lining grows outside of the organ, leading to inflammation and scar tissue formation which can require surgery.
The condition can cause heavy periods and debilitating pain that can prevent women and girls from going to school or work, and lead to mental health and potentially fertility issues.3 Endometriosis is also linked with developing other chronic health conditions such as autoimmune diseases.4
What is it like to live – and work – with endometriosis?
Nicky Darien, Regional Underwriting Manager, MAXIS GBN, shares her story: “I was diagnosed with endometriosis at age 21, having suffered in silence for many years. I am lucky enough to have had medical insurance to fund a diagnosis and multiple surgeries following several emergency admissions to hospital.
“I heard the usual: ‘when you have children your condition should clear up.’ Unfortunately, that was never the case and after multiple drug treatments I was able to help myself with a mix of traditional and alternative treatments.
“On a day-to-day basis, endometriosis controlled many aspects of my life: pain, anaemia – leaving me exhausted – and mood swings that severely impacted my confidence and often prevented me from trying to progress my career. Today endometriosis is finally more widely recognised and gets more media coverage, but getting a final diagnosis is still challenging.
“When I first joined the financial services industry, it was very male-orientated. It was difficult to openly discuss these issues or have an honest discussion about health or ‘women’s troubles’ with your manager. Today, we have a much more open culture, and employers can take the time to ensure that the work environment is not only a safe place for open discussions but can also provide flexible working solutions.”
As an underwriter, Nicky has expert insight into how multinationals can support employees with endometriosis via EB programmes and wellbeing initiatives.
“Global programmes can look more closely at their demographics and consider provisions needed to enhance the benefits provided by medical insurance, ensure health and wellness offerings support all female health and life stages, and chronic cover terms and conditions,” Nicky says.
“Staff absenteeism since the COVID-19 pandemic has risen. Employers helping their people to have adequate insurance provisions and health education programmes can assist not only in supporting and retaining talent, but also hopefully in reducing both absenteeism and the risk of major surgeries down the line, too.”
Hilary McKeag, Systems & Business Process Manager at MAXIS GBN, shares her story: “My experience is atypical in the sense that I was able to receive a laparoscopy (a surgical procedure to examine abdominal organs and the pelvic area) relatively quickly once I told doctors I suspected I had endometriosis.
“But my experience was sadly typical in many other ways too, including being dismissed by doctors – being sent away with pamphlets about depression – when I first tried to raise concerns about my period pain in adulthood. And it certainly wasn't something I would tell anyone at work about back then, even when I was in pain for days on end in the office.
“It wasn’t until I was at a party in my thirties that another woman suggested I may be suffering from endometriosis – and surgery a short time later confirmed it.
“Unfortunately, endometriosis has affected my fertility. Despite trying IVF treatment in recent years, I have not had the children I would have loved to have had. But while reproductive health and fertility issues were rarely talked about at work early in my career, I feel fortunate to have gone through these experiences in the workplace environment of today.
“Today, I think the growth of flexible working, and managers who are well-educated in employee health and wellbeing, can offer women suffering with endometriosis a much better experience than in years gone by.
“Employers have the power to create an environment to support people with chronic, health conditions, rather than leave them at risk of long-term absenteeism or career drop-out.”
The 'women's health gap'
A recent report found addressing the ‘women’s health gap’ – a gap in diagnoses, research and care for many conditions, including endometriosis – could add years to women’s lives and potentially boost the global economy by US$1 trillion a year by 2040.5
More recently, many women have turned to social media to seek support as they struggled to get diagnosis or treatment for endometriosis.6
And in recent months, researchers have announced that a drug that had previously been investigated as a cancer treatment could instead be used to treat endometriosis and had shown promising initial results in clinical trials. It is hoped dichloroacetate could become the first non-hormonal, non-surgical treatment for the condition.7
But even when endometriosis is diagnosed, accessing existing care options such as treatments and surgery can still be a challenge because it typically emerges in adolescence, when periods begin, meaning health insurers may classify it as a pre-existing condition. Sufferers can also struggle to get understanding from those around them.
This lack of awareness, coupled with the debilitating effects of endometriosis, can have serious implications for women’s lives and their careers.
While the scale of absenteeism driven by endometriosis is difficult to quantify, in one Puerto Rican study women said they had lost an average of one full-time working day every seven days when their symptoms were at their worst.9
At MAXIS we know of at least two women in our team who live with endometriosis. Imagine the number of people that could be affected in a multinational with an employee population numbering many thousands.
These brave women’s stories show that despite the complex challenges endometriosis presents, there are ways for employers to help their people suffering with the condition. So, what can you do to help?
Seven ways to support employees with endometriosis
1. Ensure your health and wellness programme fills gaps in local healthcare that could impact women’s access to endometriosis support in the country they live and work in.
2. Review your table of benefits and check whether health issues such as endometriosis are affected by pre-existing condition exclusions in any of your markets. Could you take action at your next renewal to ensure wider coverage, or use a captive to cover claims outside of existing local terms and conditions?
3. Understand what, in the makeup of your industry’s working environment, could contribute to suffering caused by endometriosis and explore adaptations, such as flexible and remote working solutions.
4. Make sure employees can confidentially seek workplace support related to their condition and ensure managers are educated on the condition and its impacts.
5. Ensure your people have access to gender and age-appropriate screening tools, which can assist them in seeking accurate diagnoses and appropriate care.
6. Review your wellness programmes – are they offering the latest tools, such as virtual clinics or wellbeing apps that could connect employees with healthcare they may struggle to access locally?
7. Like many chronic health issues, endometriosis impacts people’s mental health and is linked to additional health complications down the line. Ensure you have resources such as employee assistance programmes (EAPs) available, as well as pre- and post-natal care and fertility and menopause care wrapped into your benefits offering.
A lack of support for women going through menopause at every level of the workplace can have effects that ripple throughout an organisation and wider society. Employers must recognise that major life changes, such as menopause, not only impact women’s quality of life, but their careers too, potentially forcing them to leave their careers or halt their progression, Sanjeev says.
“Over a million women left the workforce in the UK alone due to not feeling supported as they navigate the menopause.17 And these are women who are very often at the peak of their careers.
“That’s a big loss for an individual to lose their career because of a lack of support, and from their employer's perspective, that’s a big loss as well."
Dr Neil F. Gordon, CEO and Medical Director, INTERVENT International, says:
“As a chronic condition, endometriosis is somewhat unique in that it is often primarily treated by gynaecologists who, being part of a surgical specialty, may tend to have a shorter-term outlook than what is required for optimal management. To provide ongoing, person-centric care to women with endometriosis, a shift in thinking to a more long-term, multi-disciplinary outlook is imperative.
“Components of such a holistic approach to chronic care management include patient education, lifestyle modification, medical management, pain management, surgical intervention (when indicated), psychosocial support, fertility counselling/support, regular monitoring/follow-up, and coordination of collaborative care among healthcare professionals.”
Nicola Fordham, Chief Underwriting Officer at MAXIS GBN, says: “Too many people are struggling: firstly to get an endometriosis diagnosis, secondly to get the care they need, and thirdly, with pain and discomfort during work that they may not feel comfortable talking about with their employer.
“On top of that, some people may face difficulty in obtaining continued health insurance cover when changing jobs, for example, if endometriosis is classed as a pre-existing condition.
“Multinationals employ tens or hundreds of thousands of people. So, there’s every chance you have colleagues suffering silently with endometriosis right now. Employers can help by ensuring their benefits offering includes comprehensive local insurance cover in all the markets they operate in, or by exploring shifting the ultimate risk to a captive solution.”
“You can also take advantage of the growing fertility, family-building and menopause health and wellness solutions available to enhance your EB offering with access to virtual healthcare tools that plug gaps and expand on the range of care available locally.”
“But whatever you do, make sure you ensure your workplace is set up to respond appropriately to employees seeking support for sensitive health issues, including adaptations to their working environment where possible.”
In our recent report, ‘How do industry, culture and gender affect your workforce’s health? Insights from MAXIS claims data’ we look at different gender-based healthcare concerns – and how multinational employers can respond to them.
Download our report
Read our summary Viewpoint
[1] Hudson, N. (March 2022) The missed disease? Endometriosis as an example of ‘undone science’. Reproductive Medicine and Society Online. 14 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8517707/ (Sourced: March 2024)
[2] Hummelshoj, J. and Prentice, A. (14-17 September 2005) Update on Endometriosis: 9th World Congress on Endometriosis https://journals.sagepub.com/doi/full/10.2217/17455057.2.1.53 (Sourced: November 2023)
[3] Anon (March 24, 2023) Endometriosis factsheet. World Health Organization https://www.who.int/news-room/fact-sheets/detail/endometriosis (Sourced: March 2024)
[4] Anon. Endometriosis. Autoimmune Institute https://www.autoimmuneinstitute.org/autoimmune-resources/autoimmune-diseases-list/endometriosis (Sourced: March 2024)
[5] McKinsey Health Institute (January 17, 2024) Closing the women’s health gap: A $1 trillion opportunity to improve lives and economies https://www.mckinsey.com/mhi/our-insights/closing-the-womens-health-gap-a-1-trillion-dollar-opportunity-to-improve-lives-and-economies
[6] Holowka, E.M. (May 2022) Mediating Pain: Navigating Endometriosis on Social Media. Frontiers in Pain Research. 3 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9189299/ (Sourced: March 2024)
[7] Anon. University of Edinburgh (January 25, 2024) Endometriosis could be treated with cancer drug https://www.ed.ac.uk/research-innovation/animal-research/news/endometriosis-could-be-treated-with-cancer-drug (Sourced: March 2024)
[8] Anon. Endometriosis UK. Press release: Endometriosis awareness month https://www.endometriosis-uk.org/press-release-endometriosis-awareness-month (Sourced: March 2024)
[9] Fourquet, J. and Báez L., et al. (2011) Quantification of the impact of endometriosis symptoms on health-related quality of life and work productivity. Fertil Steril 96(1) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3129383/ (Sourced: March 2024)
This document has been prepared by MAXIS GBN S.A.S and is for informational purposes only – it does not constitute advice. MAXIS GBN S.A.S has made every effort to ensure that the information contained in this document has been obtained from reliable sources but cannot guarantee accuracy or completeness. The information contained in this document may be subject to change at any time without notice. Any reliance you place on this information is therefore strictly at your own risk.
The MAXIS Global Benefits Network (“Network”) is a network of locally licensed MAXIS member insurance companies (“Members”) founded by AXA France Vie, Paris, France (“AXA”) and Metropolitan Life Insurance Company, New York, NY (“MLIC”). MAXIS GBN S.A.S, a Private Limited Company with a share capital of €4,650,000, registered with ORIAS under number 16000513, and with its registered office at 313, Terrasses de l’Arche – 92727 Nanterre Cedex, France, is an insurance and reinsurance intermediary that promotes the Network. MAXIS GBN S.A.S is jointly owned by affiliates of AXA and MLIC and does not issue policies or provide insurance; such activities are carried out by the Members. MAXIS GBN S.A.S operates in the UK through its UK establishment with its registered address at 1st Floor, The Monument Building, 11 Monument Street, London EC3R 8AF, Establishment Number BR018216 and in other European countries on a services basis. MAXIS GBN S.A.S operates in the U.S. through MAXIS Insurance Brokerage Services, Inc., with its registered office located in New York, USA, a New York licensed insurance broker. MLIC is the only Member licensed to transact insurance business in New York. The other Members are not licensed or authorised to do business in New York and the policies and contracts they issue have not been approved by the New York Superintendent of Financial Services, are not protected by the New York state guaranty fund, and are not subject to all of the laws of New York. MAR01395/0424
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