Endometriosis: Urgent action required to stop women with this excruciatingly painful condition being let down for years – Kirsty Strickland

In ‘Invisible Women: Exposing Data Bias in a World Designed For Men’ author Caroline Criado Perez writes about Rachael, a woman who suffered years of severe and incapacitating pain during her period.

Journalist Emma Barnett said she felt embarrassed as "someone who gets answers out of people for a living" that she struggled to get answers from doctors after developing endometriosis. But no one should be embarrassed about the failure to diagnose this debilitating condition (Picture: S Meddle/ITV/Shutterstock)
Journalist Emma Barnett said she felt embarrassed as "someone who gets answers out of people for a living" that she struggled to get answers from doctors after developing endometriosis. But no one should be embarrassed about the failure to diagnose this debilitating condition (Picture: S Meddle/ITV/Shutterstock)

After collapsing at a gig, Rachael was taken to hospital where doctors ran extensive tests, thinking that she might have kidney stones. When all the tests came back clear – and despite Rachael’s insistence that she was still in a lot of pain – a consultant told her ‘’we have to send you home, there’s nothing wrong with you.’’

Rachael was eventually diagnosed with endometriosis. Accompanying Rachael’s story, Perez offers a shocking statistic. It takes, on average, eight years for women in the UK to obtain a diagnoses of endometriosis.

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The data Perez cites in her book is based on a 2017 study, but as the findings of the endometriosis inquiry by the All-Party Political Group this week showed, that lag hasn’t shortened in the intervening years.

In fact, for over a decade, there has been no improvement in diagnostic times for women living with the debilitating condition.

Women not being believed

In Scotland, where the cross-party campaign to end period poverty and provide free sanitary products in schools brought plaudits from across the globe, our average is even longer, at 8.5 years.

You might think, given the difficulty so many women experience in having their symptoms translated into a diagnosis, that endometriosis is a rare condition that doctors perhaps don’t encounter all that often. Yet it is something that affects one in ten women – so what is going wrong?

The APPG report surveyed 10,000 women and there is a common thread between their stories and others who have shared their experiences in the wake of its release. Put simply, women say they aren’t taken seriously when they report their symptoms and are not believed with describing the severity of them.

Fifty-eight per cent of those surveyed said they had visited their GP more than ten times prior to being diagnosed.

That number represents not only the acute physical and emotional suffering of thousands of women across the UK, but government failure and inaction.

Emma Cox, chief executive of Endometriosis UK, said that this report should be the ‘’final warning‘’ to government and the NHS that action must be taken.

Pain driving some to point of suicide

While many women have spoken of the relief they feel at the report being published, and the confirmation it gives that they are not alone, it is nothing short of shameful that we’ve reached this point.

Endometriosis isn’t merely a bad period. It’s not something that chocolate, a hot water bottle or over-the-counter painkiller is going to fix. This is a condition where tissue, similar to that which lines the womb, starts to grow in other places, such as the ovaries or the fallopian tubes. Sufferers report not being able to sit upright, being sick, and pain so severe that they are unable to live their lives normally or attend work or school. Some women have been forced to give up work entirely, others have said they felt on the verge of suicide.

And for many, the trauma of being discounted and disbelieved by doctors is a further cruelty imposed upon them at a time when they are desperate for answers.

The so-called ‘gender pain-gap’ is well documented. Studies show that when self-reporting pain, men and women are treated differently. In A&E, when a man says he is in pain, he gets offered stronger painkillers, more quickly, than a woman does.

While there are numerous studies that document the gender pain gap, few offer a firm conclusion as to why it happens. It could be unconscious bias: where ‘hysterical’ is a word only ever attributed to women and there is no such thing as a ‘drama king’. It could be the chronic underfunding of medical research into conditions that only affect women. Or maybe, like the gender pay-gap, the advice to women is that they just need to be a bit more like men: more forceful and assertive in demanding they are taken seriously.

A no-brainer

Emma Barnett is a formidable journalist. She deals with shifty politicians in the manner of a lion toying with an antelope before going for the throat.

She also has endometriosis and has spoken about her long path to diagnosis.

‘’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.’’

Emma Barnett needn’t feel embarrassed, and nor should any other woman whose journey to a diagnosis was an arduous one. The onus should not be on women to be expert advocates before being believed in what they say about their own bodies.

The APPG report offers a series of recommendations which are notable for their reasonableness: the antithesis of how so many of the women surveyed have been treated over the years.

It recommends support measures for those with the condition, including a government commitment to reduce the average diagnosis time to four years or less by 2025, and a year or less by 2030.

It says there needs to be more research into the causes of endometriosis, and an investigation into the barriers that black, Asian and minority ethnic women face in accessing care.

In what should be a no-brainer for the Scottish government, they also seek a commitment from the nations of the UK to include compulsory menstrual well-being in the school curriculum, which they say will help young people recognise the warning signs of menstrual ill-health.

Nothing less than full implementation of the report’s recommendations will be enough. After being ignored for so long, those living with endometriosis deserve more than warm words and murmured sympathy. They need action, not words, as proof that they are finally being heard.

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