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Eendometriosis is like someone drilling your organs. Pain is like a tsunami in all your cells – or the movement of tectonic plates inside your body. Years spent fighting this problem are not “life”. Endometriosis won’t actually kill you, but suffering from it can feel like a living death.
In Emma Barnett: Fighting Endometriosis, Today’s Presenter provides all the unsolicited information and much more about the condition, which includes cells that are similar to those that follow the growing uterus elsewhere in the body. There is no cure, the only treatment available is hormones (mostly birth control pills), masking symptoms, or surgery – including a total hysterectomy, although it may not provide permanent relief. Endometriosis is very painful and rarely felt. It’s also surprisingly common: one in ten women of childbearing age in the UK has it.
Now 41, Barnett has reached the end of his bite with a) the pain and b) the medical response to it. It takes around nine years to get a diagnosis in the UK (and slightly longer worldwide), which makes patients very suspicious of their current perception of pain. One of Barnett’s interviewees is Mada, who over the years has been misdiagnosed with appendicitis, IBS and PMS. Amazingly, the internet allows TV cameras to record a laparoscopy – a laparoscopy – a laparoscopy to examine and remove some of the cells – allowing us to see how endometriosis can affect a woman’s internal organs. When he is told that the surgery has confirmed the cause of his pain, he begins to cry, and this makes him “not crazy.”
Part of the battle is being recognized, but awareness does not make the symptoms possible. Barnett is determined to introduce viewers to the constant struggle between her career and family life, filming documentaries in her pyjamas, unable to get out of bed. He meets 26-year-old Chloe, whose desire to end her pain forced her to pay for an operation in Dubai and then request a hysterectomy in the country. Anyone who’s read Lena Dunham’s recent memoir, Famesick, which contains the heartwarming story of her endometriosis (when it comes to the heavy bleeding that accompanies the condition, she describes the “huge drops that sometimes float out of me and roll on the bathroom floor like cherry tomatoes”) will know that she was fired. Like Dunham, Chloe says the severity of her pain meant she was unable to care for a child.
Barnett already has two children, conceived through IVF (endometriosis is one of the main causes of infertility), but her worsening symptoms mean she is considering more treatment. First, they want to get to the bottom of the culture that makes the last option the only option. Visiting the University of Edinburgh’s dedicated endometriosis research team, Dr Lucy Whitaker asks why there has been so little progress in treatment. The answer is the lack of money, which – Barnett points out – is because endometriosis does not kill anyone. It costs the UK economy £12.5bn a year, through women leaving work because of their symptoms. This, Whitaker thinks, is a better way to bias policy makers. Barnett greets this information in a price order with a broken smile.
As anyone who has been given a couple of paracetamols during labor will know, women’s pain is usually very mild. The slow pain, however, is no joke, and all these necessary, intentionally annoying and often very moving thoughts on the show are worth it. A chat with Wes Streeting, formerly the health secretary, starts off cheerfully, but it soon becomes clear that Barnett is in no mood to be messed with. Walking the streets is very compassionate, calling out a family member who was found after 21 years of suffering, and the police to the medical crisis at the heart of our society. Yet Barnett insists – ironically – on major guarantees. He gives them.
That Streeting is no longer on the job isn’t the only thing keeping the documentary from ending definitively: Barnett and millions of others still live in misery. You hope, however, that its existence is some kind of progress in itself. “Pain is an obvious symptom,” says Mada’s doctor when asked about the late diagnosis of endometriosis. “It’s hard to count.” This is true, technically, but it also sounds like an excuse. When figures like Barnett and Dunham dig deep to explain their symptoms, it may not be something the medical establishment can rely on for long.
