Endometriosis: The Invisible Struggle
Nicole Lundigran tackles the stigma surrounding reproductive health, shining a light on the little-discussed yet debilitating condition of Endometriosis
There has always been a quiet kind of stigma surrounding reproductive health in the UK, a subtle understanding to steer clear of words like ‘periods’ and ‘cramps’ in a public conversation. This attitude of perpetually avoiding mention of the menstrual cycle, however, helps to keep bigger words under-wraps. Words like endometriosis, which is a condition affecting 1 in 10 women in the UK, where cells like those in the womb lining grow elsewhere in the body, most commonly in the ovaries and the fallopian tube. Women with endometriosis can suffer many debilitating symptoms such as severe pain during periods or whilst having sex. (More information about the symptoms of endometriosis can be found here.) It’s easy for friends and family to dismiss period pain, but if it is disrupting daily activities, then it’s time to visit the GP.
It also happens to be a condition which takes around eight years for a medical diagnosis
The problem is, it also happens to be a condition which takes around eight years for a medical diagnosis, a wait time which hasn’t improved in over a decade.
Which leads to the question: why? Why is endometriosis a difficult condition to diagnose? Is it only because of the taboo around discussing the topic, or are there other factors at play? Unfortunately, there is growing evidence towards the latter. According to Lone Hummelshoj, chief executive of the World Endometriosis Society, “there’s still a very low recognition of endometriosis at the general practitioner level.” In other words, our own healthcare is displaying signs of misconceptions and possibly, a bias. So, women – especially queer women – are facing a massive healthcare inequality.
The All Party Parliamentary Group concluded in a report last week that 58% of women with endometriosis visited their GP with symptoms over 10 times before being diagnosed. They further stated the reason for this is because “symptoms are not recognised by healthcare practitioners, or sometimes the level of pain is simply not believed”, meaning endometriosis isn’t getting the attention it needs. Even after all these years, there is still little research and clinical investment into the condition. Professor Andrew Horne, a gynaecological specialist at the MRC Centre for Reproductive Health in Edinburgh, thinks this is because with research, “the funding was historically led by men”.
However, the factors leading to the long wait times for diagnosis of endometriosis is complex, and there isn’t one single cause you can point a finger at. GP’s have, statistically, shown a lack of proper care and attention – but there is more to consider. There’s a huge culture of shame around discussing menstruation and there still isn’t a non-invasive test for endometriosis. Only a laparoscopy surgery can ever definitely diagnose the condition.
Whatever the reason, the facts remain. Women are not getting the treatment they need in the time they need it, and although endometriosis is not fatal, it is progressive and can lead to issues such as infertility. It makes it so important for anyone worrying about period-related symptoms, or anyone who has noticed a change in their usual cycle, to talk about it with others – especially their GP.