Emma Barnett: Fighting Endometriosis is a documentary where the Today presenter shines a light on a condition one in ten women in the UK have. Despite how common endometriosis is, it is a condition that is misunderstood. In the UK, the average time to receive a diagnosis for an endometriosis is nine years and four months on average. And for individuals from ethnic minority communities, the wait averages eleven years. For me, it took over a decade. It is difficult to articulate what it feels like to spend so many years trying to understand your own body. When doctors recommend the pill or when people shrug at you and say that periods are just painful, it can become incredibly easy to convince yourself you are overreacting. It’s exactly what I did. I began to wonder whether the pain I was experiencing was ordinary period pain and I was incredibly sensitive and weaker than other people. And there’s a question you contend with, is this painful enough that I need to get someone to investigate it?
This is part of why watching Barnett’s documentary is important and why for those who have endometriosis it will be a painful reminder of the pain we endure. By bringing endometriosis into the public conversation through the documentary and sharing the numerous experiences of women living with the condition, it highlights the reality of what the condition is like. The documentary does not shy away from the physical realities of the condition. One particularly emotional moment featured a woman undergoing a laparoscopy after years of struggling through painful periods. At one point in her life, she had her appendix removed unnecessarily, because doctors failed to take her pain seriously. Medical misogyny which causes the long wait times for an endometriosis diagnosis often causes individuals to be diagnosed with conditions like IBS. Women who are treated like this are subjected to unnecessary medical procedures and medications which fail to target the root causes of pain.
What is particularly heartbreaking about the documentary is that the pain is not only the severe physical pain, but also the impact on the lives of women who have it. There is an emotional and candid conversation between Emma and a young woman whose endometriosis has severely impacted the quality of her life. As she discusses the possibility of having children, she explains how the severity of pain she experiences makes the idea of being a mother impossible. Instead, she tearfully reflects on her ability to be a fun auntie to her friends’ children. It is a deeply moving moment which illustrates that endometriosis does not solely cause painful and heavy periods, it also affects the future you want and the reality of what it can be. The condition does not exist in isolation – it affects your life in many ways. Your ability to make plans, to spend time with the people you love and the constant requirement to explain why you cannot do something so basic. Your body feels as if it’s letting you down. When I started writing this, I was nervous about disclosing the extent of the pain I have experienced. It is not something I have felt comfortable talking about, and for years, I have convinced myself I had to put up with this. How could I praise a documentary that is so unrelenting in its depiction of endometriosis, if I could not be honest about my own experience of it?
Since I started my period at the age of nine, I have experienced incredibly painful and heavy periods. At school, trips to the bathroom involved muffling my cries. I would be in constant fear at the amount of blood on my pads and the pain was so severe, I could not muster the strength to get up. For years, I had assumed this was simply what a period should be and that I was weak for feeling like this. I became accustomed to the debilitating pain. A series of GP visits reinforced this belief, that my symptoms were ordinary period pain and that my flow was a bit heavier than usual. When you are repeatedly told that it is normal, it’s difficult, because you question whether you should push for answers. It’s a feeling I struggle with constantly. Last year, during London Film Festival, I went to A&E one evening after bleeding through a dozen pads in less than six hours. The pain was so severe it took me thirty minutes to get up and out of the bathroom. I had spent that time throwing up constantly and bleeding without an end in sight. I felt as if I was still overreacting and I knew my friends were busy with London Film Festival, so I booked an Uber to A&E on my own. I waited hours to be seen, pleading with the receptionist to check the bathroom in case a doctor called my name and I was not in the waiting room. To make matters worse, both of the doors to the women’s toilets were broken which meant I had to awkwardly position myself to go to the bathroom and hold the door closed. It was degrading and an experience that makes me cry when I think too deeply about it. I was not Aaminah, a twenty-four-year-old woman who loved film and was going to see all of these incredible films at a film festival I eagerly awaited for over the year. I was someone else. My body did not feel like my own. It has not for a long time. The hours spent in A&E were spent selling my LFF tickets to friends and strangers. I remember feeling guilty for being upset for something that seemed more trivial, but that experience represented the culmination of years of having to cancel and change plans and how endometriosis can rob you of parts of your life.
The impact of my periods far beyond those bad days. On my period, I try not to go out if I can get it. Gravity is cruel and after watching a film with a friend or sitting for a period of time, I will apologise profusely to whoever I am with before rushing to the bathroom. Have I leaked? Have I brought along enough pads? Am I an inconvenience to my friends? These are the questions that I reckon with as I regularly pass blood clots that meet the NHS guidelines for concern. On days where I force myself into the office, I make the ten minute walk to the station and the seventeen-minute tube journey despite the crippling pain which makes me want to double over and scream. I rush into the Pret nearby whose bathroom code I have on my notes app. I then have a fifteen minute walk to the office. The forty minute commute should be an easy one, but it feels like a herculean effort during my period. I cancel plans and stay in bed, curled up into a ball, ridden with guilt over what my body cannot do. I book Zumba, Pilates and Yoga classes optimistically and when I cancel them, I feel a wave of shame. On the worst days, I manage to eat a few crackers and drink some water. My stomach and uterus are in searing pain. I cry a lot on the bad days and grit my teeth. I ignore messages from friends because I do not want to bother them with details of my pain. They offer help. They offer to get a food shop, collect medicine and I ignore the offers, because I am truly ashamed of the fact that my endometriosis constrains my ability to live the life I thought I could have.
A diagnosis is not everything. Even for the women featured in Barnett’s documentary and Barnett herself, receiving the answers does not mean the pain and difficulties disappear. There is no cure for endometriosis and finding treatments that work can be a long and infuriating process. And for some women, the condition brings the additional heartbreak of having to reconsider their dream of having children. And as discussed in the documentary, there is a huge economic cost to the condition. Endometriosis UK estimates that one in six women with endometriosis will leave the workforce because of it. The economic cost of it was estimated at £12.5 billion per year. I often think about my future – will I be one of the six? And the sad reality is, as soon as you hear these figures, you begin to wonder if the future of endometriosis research and treatment will come because of its economic cost to the country. This is why Emma Barnett: Fighting Endometriosis matters. It depicts the physical pain and toll of the condition whilst also showcasing the profound impact it has on the future you imagine for yourself and the one you can live. The documentary gives women the space to speak about endometriosis, the parts that are uncomfortable, heartbreaking and difficult to put into words. And it leaves us with a lot of questions to consider. How can we get to quicker diagnoses for women? How do we ensure they receive ongoing support? And how do we remove the stigma associated with periods? It is a documentary that will hit home for people who have endometriosis and for those who are struggling to receive a diagnosis.
