March is endometriosis awareness month, a time where awareness is drawn to the impacts and experiences of people with endometriosis. For many people, it is a chronic and debilitating condition that may affect social relationships, employment, sexuality and mental health. Endometriosis is a condition where cells normally found in the lining of the womb (uterus) are found elsewhere in the body. It may lead to infertility, fatigue, chronic pelvic pain, painful or heavy periods and bowel or bladder problems. Whilst there are a range of therapeutic supports, there is no identified cause of endometriosis, and no known definite cure. This illness impacts approximately 10% of people born with wombs worldwide (about 176 million) and statistics suggest that on average it takes approximately 7.5 years to be diagnosed. It is suggested that endometriosis costs the UK economy £8.2 billion a year in treatment, loss of work and healthcare costs (all figures from Endo UK).
This month is important to me, as I have lived with ‘endo’ for most of my life. In addition, my physical health journey with endometriosis has not been dissimilar to that of my mental health, which has also played a significant role in my life. Like my mental health, there were many times I felt my experiences of endometriosis were unheard, that they were minimised and that certain therapeutic approaches were suggested to me as being preferred to others. Like my mental health, it impacted my ability to engage in work and social events, and how I could do certain tasks. Being diagnosed with endometriosis meant that, as well as my experiences of mental ill-health, I now had another long-term condition that would require more treatment, more changes and more energy. My physical health issues compounded my mental health difficulties, and my mental health often caused my endometriosis to flare up.
When I was eventually given a name for my experiences, the impact to my mental health had already occurred, and there was no holistic support readily available for me to manage this. I did not feel that people saw my physical and mental health experiences as now connected and impacting on each other. Furthermore, as endometriosis has historically been downplayed and often referred to as ‘women’s issues’, it was difficult to articulate the support or adjustments I needed. It wasn’t until I saw a professional who better recognised the intertwined nature of my physical and mental health, that I began to be able to more actively seek what I needed in the workplace, and advocate for workplace changes that made spaces more welcoming for those experiencing endometriosis.
Additionally, there is increasing research exploring the links between endometriosis and experiences of mental health issues. Several studies have shown that people who experience endometriosis are more likely to report high levels of anxiety, depression and other psychiatric disorders (see Laganà et al. 2017, Pope et al. 2015). It is important that future research, policy and funding include a focus on how mental wellbeing is linked to endometriosis, and that those diagnosed with this illness are offered meaningful mental health support early.
Adopting a holistic lens
This developing body of research, as well as my own experiences, have only served to further fuel my belief that when we do mental health research, we must reflect on how mental health is connected to a range of other things, including physical health. This has been important in how I have undertaken my work from a lived experience perspective, as I have drawn on experiences from both my physical health and mental health journeys, as well as the nexus of where these have intertwined. It has helped me consider mental health through a more holistic lens and encouraged my research to reflect on experiential impacts of diagnostic labels. I believe it is important that those who work within the mental health field, from health professionals to researchers, ensure they consider how individual's lived experiences are often multi-layered and ensure this is recognised in not only in practice or work, but how we support people in the workplace.
Tanya MacKay is a Research Manager at McPin