Health and Wellbeing Opinion

Pain, pain go away: Endometriosis and the battle to be heard.

Menstruation is a long-standing taboo in cultures across the globe. It is estimated that there are as many as 5000 euphemistic expressions for “that time of the month” knocking about in languages all over the world. A personal favourite is the rather colourful “Les Anglais ont débarqué” (“The English have landed!”), which feels as if it should be followed by a “quick, make to the hills!” or “watch out, men, we have incoming!”. Meanwhile, a societal favourite seems to be the generalised “women’s problems”, a term which neatly covers all things period-related, and fails to account for all genders. But what happens when these “women’s problems” translate as excruciating pain, lost days at work, difficulties conceiving? When faced with the staggering reality of endometriosis, the clichés soon begin to ring hollow… 

For those unfamiliar with the condition, endometriosis is a debilitating and life-altering disorder that is estimated to affect as many as one in ten women of reproductive age. That equates to approximately 1.5 million women and girls living with the disease in the UK alone, and yet it shockingly remains one of the most underreported medical issues of our era. 

The name itself refers to a condition in which tissue, similar to that found in the lining of the uterus, grows outside of the womb, often on ovaries, fallopian tubes and bowel tissue. Every month, when the lining of the uterus breaks down during menstruation, the same process takes place elsewhere in the endometriosis tissue. Unable to leave the body, this broken-down tissue can lead to inflammation, scarring, and excruciating pain which often greatly hinders the sufferer’s quality of life.

Despite the staggering number of people affected by this crippling condition, it continues to be marginalised in both scientific and sociopolitical discourse, meaning the daily struggles of millions are not only going unreported, but also hugely misunderstood. According to the charity Endometriosis UK, it takes an average of 7.5 years from the onset of symptoms to a diagnosis. This is partly due to the medical difficulty of identifying the condition; many of the common symptoms –  such as painful periods, irregular bleeding, constipation and pain during sex – can be attributed to other diseases such as IBS, PID or PCOS.

However, science is not the only guilty party. In fact, it would increasingly appear that endometriosis is as much of a societal issue as it is a medical one, with the two far from mutually exclusive. Many people who menstruate tend to attribute the primary endo symptom of painful periods to simply a part of female life: they have been dealt a bad hand in the biological game and just need to suck it up. This is all fed by a frightening societal disparagement of what many deign to brand “women’s problems”. In a world where some people who menstruate are already battling workplace sexism and the gender pay gap, citing female biology as a reason for impaired work or study is hardly going to help smash the glass ceiling. So they keep quiet, for God forbid that the endometriosis sufferer becomes the new “hormonal woman” trope of the office. 

Some may argue that this silent approach actually represents an act of feminism, fearing that different rules, allowances or expectations for menstruating women will only serve to reduce woman to her body, a slave to her biological processes, and thus a complicit player in institutionalised patriarchy. It is a valid point, but one that is alarmingly predicated on the belief that woman must stifle her sexual difference – and let us not forget her pain – in order to have a shot at equality. 

The irony in all of this is that many who suffer from endometriosis, regardless of whether they communicate their problems to others or not, do speak of seriously impaired working productivity. For a student, this translates as skipped classes, missed deadlines, and poorer concentration. This can have a knock-on effect on their later professional chances, impacting pay, job satisfaction and sick leave. To put it bluntly, abdominal cramps severe enough to cause vomiting and even fainting are not conducive to achievement. 

What is perhaps even more concerning is the rebuff with which many sufferers are met, should they choose to speak to their GP. Countless personal testimonies provide a tragic reflection of the reality for many people, who are frequently told that their symptoms are simply an unlucky part of ‘normal womanhood’, passed from one contraceptive pill to another, or fobbed off with painkiller prescriptions. This is not to say that the medical profession is failing people who menstruate, as doctors are ultimately operating in a scientific community which has only very recently started investing in research into the condition.

Despite accounts of endometriosis symptoms dating as far back as ancient civilisation, it was not until the 1920s that the disorder was first “identified” and labelled, and research into the link between the disease and infertility (approximately 30-40% of those diagnosed have difficulty conceiving) only really began during the 1990s. Understanding of the causes, factors, and treatments for the condition is thus only in its infancy. There is still an enormous amount of work to do before we can even start to comprehend this widespread and damaging disorder, and such a task does not just fall to the scientists – we all have a part to play in educating ourselves and others about endometriosis, by raising awareness and encouraging people who menstruate to seek help and push for diagnoses.

Endometriosis UK is already doing wonderful work towards this. The charity provides a platform of support groups, step-by-step guides for getting diagnosed, symptom trackers and personal stories, all in an effort to boost understanding of the disease and help those suffering from it, but they cannot do this alone. Their success relies on fundamental societal changes: we need to extricate menstruation from its taboos and euphemistic shroud, promote teaching about endometriosis in the national curriculum, invest in greater research, and stop dismissing pain as a feminine norm. We owe people that much, surely. 

For more help and information about Endometriosis: https://endometriosis-uk.org/