You may have seen that The University of Manchester is now an Endometriosis Friendly Employer. If you’re searching for information on how to best support your team members, or are seeking support for yourself, please read on.

My name is Lauren Bramley, and in 2022 I was finally (after 12 long years!), diagnosed with Endometriosis. Throughout this period, I have navigated work and study, on many occasions with great difficulty and pain, and now more than ever, deeply dedicated to advocating for more inclusive practices.

It’s important to acknowledge that Endometriosis and other menstrual health conditions, impacts people differently. These tips and resources are drawn from my own experiences, and it’s important not to assume our colleagues and friends will have the same journey. We encourage you to start the conversation with them and ask them of their experiences.

The top four tips to support someone with Endometriosis, PCOS, or other chronic illnesses:

Tip 1: Stay informed *

Thank you for actively seeking information on how to practically support your team. It makes a huge difference when managers/colleagues are already informed about endometriosis. However, there is so much that we don’t know (the reality of dealing with an underfunded, under-researched afab health condition), so keep reading and learning as the conversation grows.

Currently, 1 in 10 people assigned female at birth have endometriosis (but it’s expected to be a lot more). It’s a condition where cells that are similar to the lining of the womb grow outside of the womb. These cells also respond to the menstrual cycle, but, as they are growing outside of the womb, they have nowhere to go when the menstrual cycle starts. The result is inflammation and, in some cases, debilitating pain and gastrointestinal symptoms, from where these cells (or lesions) can begin to stick to other organs. In Stage 4 Endometriosis, these lesions are found outside of the womb on organs such as the bowel, bladder, diaphragm and in some cases have been found in the lungs.

Endometriosis is a whole-body disease, not *just* a bad period. Fatigue, nausea, depression, anxiety and infertility are all symptoms of the condition, and you can experience pain and symptoms at any time of the month. It’s also important to note that levels of pain and the impact of endometriosis do not correlate to the amount or severity of Endometriosis found. You can have what is known as “mild Endometriosis” and be in absolutely debilitating pain, and contrastingly there have been cases where people have had stage 4 “severe” Endometriosis and have not realised until they have experienced difficulties trying to conceive. So, if you hear that someone has stage 1 or “mild” Endometriosis, please know that their experience may be anything but “mild”.

The average time to get a diagnosis is 8 years – yes, you read that correctly! The only way to definitively diagnose Endometriosis is through laparoscopic surgery, an invasive procedure which requires the use of general anaesthetic. There is no scan (including an ultrasound or MRI) that can accurately diagnose it. There is no known cause or cure, and the most effective treatment is through what is known as excision surgery (where they cut out these cells or “lesions”), however NHS waiting lists are currently 2 years and even then, this is not a definitive cure. Most people with Endometriosis will require multiple surgeries throughout their lifetime.

Endometriosis UK found that 1 in 6 people with the condition have had to leave their jobs due to incompatible or uninformed work practices.

Endometriosis is a long-term condition that can impact an individual’s ability to carry out day-to-day activities, therefore it can be considered a disability under the Equality Act. As a result, reasonable adjustments should be put in place to support colleagues. No one should have to leave their job or miss out on career opportunities due to a health condition. As mentioned earlier, the average diagnosis time is 8 years, so this must also include those going through investigations for Endometriosis.

There is a wealth of information (and unfortunately, misinformation) about Endometriosis, PCOS and other menstrual health conditions. Below are trusted resources:

• Menstrual Health at Work | Endometriosis UK– these are incredibly helpful webinars on managing endometriosis, PCOS, PMDD, Adenomyosis, and a range of menstrual health conditions at work.
• The Knowledge by Dr Nighat Arif
• Period Power by Maisie Hill

Tip 2: Find Your Support Networks

UoM Endometriosis and PCOS Staff Network

We now have 130 members where we meet through Microsoft Teams to receive support and share ideas on how to best manage the conditions at work. Please do make your team aware of our network. We run events twice a year where we aim to give information about Endometriosis and PCOS, alongside workplace advice.

In 2025, we’re aiming to run a session specifically for managers.

Endo Champions

As part of the Endometriosis Friendly Employer Scheme, we will soon have 4 designated Endometriosis Champions who can signpost colleagues to resources from Endo UK, Occupational Health, and about the network. 

These champions should be in post by January 2025.

Tip 3: Making Reasonable Adjustments

Colleagues can be referred to DASS and Occupational Health to find out what support can be put in place to help manage Endometriosis (and a range of menstrual health conditions and chronic illnesses) at work. Of course, every role is different and will have specific requirements, but below are a few examples:

• Flexible Working –we’ve heard feedback from colleagues about the challenges some face in navigating work-from-home policies, particularly when managing chronic health conditions. In some cases, colleagues have had to take sick leave when they might have been able to work effectively from home. This can sometimes lead to unintended consequences, such as reaching triggers linked to absence thresholds. While it’s important to prioritise rest and recovery when unwell, there are occasions where working from home can provide a practical solution for those managing chronic conditions. Being able to work in a comfortable environment—with access to resources such as medications, informal clothing, and heating pads—can make a meaningful difference in maintaining productivity without compromising wellbeing. We encourage a thoughtful review of our working practices to better support colleagues with chronic illnesses. Where roles allow, empowering individuals to make decisions about their working arrangements, in consultation with their managers, could create a more inclusive and supportive environment. Trusting colleagues to balance their health needs while fulfilling their responsibilities can benefit both individuals and the wider team.
• Uniforms – does your job require you or your team to wear a uniform? If so, is this uniform light in colour or restrictive? Endometriosis can cause very uncomfortable bloating, which tight clothing can make so much worse. Consider if this uniform is necessary or if allowances can be made.
• The option to sit down
• Correct equipment (desk, chair etc).
• Hybrid as default – Does your role involve planning events or workshops at the University? We have access to hybrid equipment at the University, so please, use it. Working from home can feel very isolating when it’s not a choice, and colleagues shouldn’t miss out on vital information or creating meaningful staff relationships that will help build their careers, simply because they cannot physically be on campus. In-person only events can exclude colleagues who have no choice but to work from home.
• Think outside the box – consider options such a “no meeting days/weeks” where you know you’re more likely to be suffering from a flare-up. This helps manage workload more effectively, cause minimum disruption to the week by not having to rearrange meetings last minute.

Tip 4: Advocate

Rethinking Absence Policies

As a network, we want to highlight the importance of supportive and empathetic practices when managing absences for colleagues with chronic health conditions, such as Endometriosis.

The current use of absence trigger points can unintentionally create additional stress for those with chronic conditions, which may exacerbate symptoms and lead to increased absences. We strongly encourage a review of policies around absence management to ensure they reflect the realities faced by colleagues managing such conditions. We suggest removing trigger points for colleagues with chronic conditions to avoid penalisation of individuals for circumstances beyond their control.

NHS waiting lists for surgery are currently two years (sometimes even more), and pain management and specialist care options are extremely limited. Even with the greatest of intentions, it can become impossible to work through extremely debilitating symptoms, whilst worrying about the loss of your career, the effect on your relationships with colleagues, and having to wait 24 months+ for pain relief through surgery.

Facing a formal meeting as a result of reaching an absence trigger is unlikely to be the most constructive approach in cases of chronic illness. Instead, fostering open conversations between managers and employees about the challenges they face could lead to more effective working practices.

UoM Menstrual Health Toolkit

P&OD are currently working on creating a menstrual health toolkit. This should include practical advice, policies and resources, so please keep an eye out for this.

Summary

If you are a manager looking to support someone with Endometriosis, the most important piece of advice I can provide, is to stay informed and communicate with colleagues.

This disease can impact individuals very differently, therefore it’s important that we don’t take a one size fits all approach and keep the lines of communication open and transparent.

If you yourself have Endometriosis or PCOS, please consider joining our network.

We are here to help lighten the load and advocate for what we need.

*I have written these definitions to the best of my knowledge using trusted sources, but I am not a medical professional or an expert in this area. It is really important that we don’t spread misinformation about Endometriosis, so if you are an expert in this area and notice any inaccuracies please do let me know so that we can update this blog post.

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