Living and working with endometriosis

It was 10pm, hour 6 of my 3rd A&E visit in as many weeks for severe abdominal pain. I’d been prepped to have my appendix out twice, and had 3 types of antibiotics, several scans, many blood tests and nearly every type of painkiller the NHS can offer, when a junior doctor on their first hospital rotation out of medical school casually said, ‘I think you might have endometriosis.’ My breath caught in my throat. ‘That, or ovarian cancer.’ 

Endometriosis (often known as ‘endo’) is a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes. The tissue behaves like it would inside the womb, becoming inflamed and painful, and can grow into lesions that wrap around the bowel, bladder and even organs outside the abdomen. My first thought was that I was heading for a hysterectomy, or would suffer until menopause. (I have since discovered that a hysterectomy is not a cure for endo, as the tissue continues to grow around the abdomen. There is no cure.) My potential diagnosis felt overwhelming. 

It is estimated that as many as 1 in 10 women of reproductive age suffer from the condition, but – like many women’s health conditions – it is almost impossible to get an accurate figure due to the lack of funding for research. The other reason it’s hard to estimate the true number of endo sufferers is because it is so hard to diagnose.  

My search for answers led me to Oxford. Tatjana Gibbons, a Research Fellow in the Nuffield Department of Women’s and Reproductive Health, told me ‘I conducted a national survey of over 1,000 individuals with suspected or confirmed endometriosis. Most respondents had experienced a delay in diagnosis, with an average delay of eight years in the UK. Of those who experienced a delay, 72% reported that they would have made different life choices had they received an earlier diagnosis. These findings underscore the urgent need to improve diagnostic times and support individuals with endometriosis.’ She is working on a way to make endo diagnosis quicker, more accurate and less invasive.  

Working with a long-term health condition was something I had never fully considered, and I couldn’t see how I was going to blend my job with my new daily reality of pain, exhaustion and other symptoms. Luckily, I had an extremely supportive line manager. My manager, Mark McDermott, talked to me about his perspective: ‘I saw the physical and emotion toll the symptoms of endometriosis had. From a line manager’s perspective, the key was understanding and flexibility. We stayed in regular contact, and sufficient trust allowed us to establish effective working patterns and back-up arrangements, which enabled Esme to continue contributing when she felt capable, but able to step away when needed too, knowing there was support for her personally and for her high-priority activities.’ It’s worth noting that your line manager or your HR Business Partner can help you with a referral to occupational health, if that is appropriate. 

I experienced a delay of only a few months from that first mention of endo to waking up from a laparoscopy to be told that I did indeed have extensive endometriosis in my abdomen, which had been removed. Tatjana, who works with endo patients, told me ‘It is important to recognise that endometriosis is a complex and multifaceted condition with profound implications for those affected. Beyond the pain it causes, this condition can significantly impact individuals’ lives by compromising their academic and professional pursuits, personal relationships and mental wellbeing.’  

Right now, after recovering from my surgery, I feel better than I have done in a long time. I hope that my surgery was effective and gives me at least a few years’ break before my endometriosis returns. But the psychological impact of having a long-term health condition remains. Since my first hospital admission I have become more aware of looking after myself physically and especially mentally, which has not been easy. Wellbeing is a term that is overused, but in this case, I knew that building my resilience and considering my wellbeing was essential for me to be able to work and be an active member of my family. I’m working on not reacting to every symptom, getting outside as much as I can, finding exercise that I can do to alleviate pain (not always possible), and spending time with friends and family who give me energy and understand when I need to cancel. And, of course, being open about my experience and raising the profile of endometriosis. 

Find out more 

For more information about HR policies around working with a long-term health condition, Kate Butler from the HR Policy team recommends the new University guidance on supporting those experiencing negative effects of menopause in the workplace. This outlines supportive interventions focused on creating an open and inclusive environment where people feel confident to ask for the support they need, and considering any workplace adjustments which might enable colleagues to keep working at their best. The Equality and Diversity Unit also provides information for living with long-term health conditions. 

Work + Family Space, a wellbeing resource for University employees, has articles that may be useful for endo sufferers and their managers. To access them, staff will need to sign up to the Work + Family Space. Here are two useful links from the platform: 

• Tips to Manage Endometriosis While at Work (myfamilycare.co.uk) 
• 5 Ways to Be an Endometriosis-Friendly Manager (myfamilycare.co.uk) 

You can also visit Endometriosis UK to access support, information about policy, blogs, news and ways to get involved.