Endometriosis showed me we need better ways to talk about women's pain

Emma Barnett
·4-min read

You know when something isn’t right – in your body, your life, your mind. I certainly did for the 21 years I battled with my periods every month, only to be advised to try strong painkillers and various contraceptive pills, with sympathetic smiles from GPs. I was apparently one of the “unlucky ones”: those women who had been dealt the bad-period hand. The same script was fed to my mum and hers, both of whom dutifully digested the line, passed on from generation to generation like the worst kind of inheritance.

Except it wasn’t true. I was ill. Really ill. And it took two years of trying for a baby without a hint of success, and my periods getting worse, for me finally to push for answers. Even then, my guess-diagnosis came via a mate who happened to be an obstetrician, not from a doctor I had sought out. I say guess-diagnosis as I have a condition that can only be formally diagnosed via keyhole surgery. As I sat slumped to one side during a breakfast out one day – she inquired why I wasn’t sitting upright. I told her I never can on day one of my period, how my bone-deep pain feels like it’s dragging me slowly to the floor. She then gently mentioned a word I am ashamed I couldn’t spell, let alone pronounce: endometriosis.

I sloped home, Googled, and felt like a terrible light had switched on. Twenty-one years: that’s how long it had taken. A laparoscopy followed, and the diagnosis was finally made – after two hours of lasering my insides. I had been menstruating since I was 10, and at 31 finally I had an answer, after years of feeling like I was going mad. I am far from alone.

Endometriosis, a debilitatingly painful condition that robs women of their ability to learn, earn, play, reproduce, have sex and even defecate normally is where tissue that is similar to the lining of the womb grows elsewhere in the body and doesn’t leave. It affects at least one in 10 women in the UK. I am not surprised that more than 10,000 of them answered MPs’ call in a report published this week, to help paint a grim picture of what this silent thief takes from our lives.

And while I welcome parliamentarians across all parties shining a light on this, it is scandalous that the average wait for a diagnosis is still eight years – a figure that hasn’t improved in a decade. My 21 years of wandering around wondering why every other woman seemed to cope during their periods made me feel crazed at times. (I am also not surprised that 90% of respondents said they would have liked access to psychological support, but were never offered it.)

Over half of people surveyed had visited the GP more than 10 times, and gone to A&E with symptoms, all before diagnosis. And these are the people who knew to tell their experiences to a parliamentary inquiry. What about those silently soldiering on – screaming on the inside – who don’t even know how to ask for help?

We already know there is a gender pain gap. We know women wait longer in A&E and struggle to be given as effective painkillers as men receive. We know female pain is dismissed more readily – as if women and pain go together like bread and butter. Now, with Covid upon us and telephone doctor appointments the norm, how on earth are the next generation of women going to land a diagnosis?

We all need to get a lot better at finding the language to describe our symptoms. Pain is notoriously hard to describe and pinpoint. But for women, the work is doubly arduous. We have to learn to advocate for ourselves – and hard.

I am someone who gets answers out of people for a living, and I failed to obtain answers for myself on the health front. Embarrassed doesn’t cover it. But we need doctors and health professionals to meet us in the middle, believe our testimonies and help us over the line to the sunlit uplands of diagnosis.

So no, it is simply not ambitious enough to cut wait times for a diagnosis to four years or less by 2025, as this report wants to do. While it is galling to know that there is no cure to this foul disease – which affects the same number of women in the UK as type 2 diabetes, but receives a fraction of the medical research funding – the least we can do is diagnose. And aim high.

Like I said, you know when something isn’t right. A silent, weary army has been awakened, and refuses to be fobbed off any more.

• Emma Barnett is the new presenter of BBC Woman’s Hour and the author of It’s About Bloody Time. Period.