Endometriosis Awareness Month: How to improve the workplace - Dr Laura Lane

These tissues break down and bleed each month causing scar tissue and lesions which can lead to pain and inflammation.

There is currently no cure for endometriosis and limited understanding of its causes. On average, diagnosis takes eight years in the UK and it can only be properly diagnosed by laparoscopic surgery.

Each person’s experience is unique, but endometriosis is often characterised by: chronic pain that can prevent people from engaging in everyday activities; digestive issues and pelvic or abdominal inflammation; chronic fatigue, low energy, and brain fog; difficulty conceiving or infertility; and elevated stress levels, higher risk of anxiety, depression, and a sense of isolation.

Sadly, diagnosis times haven’t improved in recent years. The Royal College of Obstetrics & Gynaecologists report, Left for too long, found that wait times had increased by 60 per cent from pre-pandemic levels (the largest increase across all NHS specialisms). Crucially, 77 per cent of those surveyed said the long wait negatively impacted their ability to work.

It took over 11 years for my diagnosis in 2019, with several misdiagnoses along the way. I’ve since had two operations; the first to excise the endometriosis and the second a hysterectomy to remove my uterus and ovaries, given my symptoms didn’t improve. Endometriosis is a progressive condition and unfortunately, mine had become widespread given how long it was left untreated, leaving my symptoms severe and making my operations complex and lengthy.

I feel very fortunate that at Kada I’ve been able to speak openly about my experiences. Given there’s a strong sense of empathy and trust within the team, we’ve been able to work together to agree on a working pattern that allows me to continue to manage my ongoing symptoms.

Drawing on my experiences of navigating work with endometriosis, here are my three top tips for fellow endometriosis warriors and their employers. This isn’t an exhaustive list and I have a desk-based job, so for those in physically demanding jobs or where working from home isn’t a possibility, different approaches may be much more relevant.

- Reviewing work patterns: for example, starting later each day may help to manage fatigue and building in regular breaks for movement might help with pain management.

- Leading by example for empathy and trust: open communication is crucial for discussions about adjustments. Speaking about an invisible condition might leave people feeling vulnerable so managing from a position of empathy can provide a more trusting environment.

- Shaping workplace culture: this can ease the way or impede the success of points one and two.

Laura Lane is an Associate Director at Sheffield-based Kada Research.