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It takes an average 7.5 years for women to be diagnosed with endometriosis – Week 29

In last week’s first post on HEALTH I looked at the fatal consequences of ignoring the differences between men’s and women’s bodies: women are 50% more likely to be misdiagnosed following a heart attack because their symptoms are different to men’s.

Endometriosis is a long-term condition where tissue similar to those lining the womb grow in other places, such as the ovaries, fallopian tubes, bowel and bladder. It can have a significant impact on sufferers, many with different experiences – such as excruciating pain and infertility – which has far reaching effects on all aspects of their lives, socially and professionally.

Endometriosis UK Rankin turns his lens on endometriosis in new exhibition with Standard Life and Endometriosis UK 20 March 2019

This week I’m looking at a topic that only affects women and as a result remains very low on the list of priorities for the medical profession. In spite of the fact that 1 in 10 women of reproductive age in the UK will suffer from endometriosis, it takes an average of 7.5 years to receive a diagnosis. That’s 1.5 million women who suffer every month only to find their symptoms dismissed. Those symptoms include:

  • severe and chronic pelvic pain,
  • painful periods
  • painful bowel movement
  • pain when urinating
  • fatigue and lack of energy
  • pain during or after sex
  • difficulty getting pregnant

There is no cure for this condition and the cause is currently unknown. It was only in 2017 that the first guidance on endometriosis was given to doctors – yes, you read that correctly: The Year Twenty Seventeen – and part of that guidance was to ‘listen to women’.

Why is this important?

If a condition that affects one in ten women – that still has no cure, whose cause is unknown – is only just afforded guidance and recognition in 2017 then we have a serious problem. 1.5 million women are crippled monthly by the pain of endometriosis and the medical profession continues to gaslight them, labelling the issue just a regrettable consequence of being a woman.

Dismissing pain as ‘natural’ and ‘inevitable’ is a regular occurrence for women and a topical issue – as it hit the headlines just last week when celebrity Shay Mitchell had childbirth mansplained to her by her boyfriend, who pushed her to give birth ‘naturally’ and without an epidural. * Please don’t mistakenly believe this is a one-off example – stories on living with endometriosis are littered with instances of pain being dismissed or diminished.

What can you do about it?

When NICE recommend listening to women, they’re not wrong. Start by listening to the people in your life who are suffering and don’t dismiss their problems. Endometriosis UK published a series of pieces in 2018 on living with the condition and I’d recommend reading their stories:

  • Jilly: ‘I wish I had been told that you have to fight to have your symptoms taken seriously’
  • Anonymous: ‘I wish I had been told about the struggles you experience on a daily basis and how debilitating this chronic illness can actually be’
  • Jess: ‘I wish I had been told it’s okay to take it easy!’
  • Bhavni: ‘I wish I’d been told about things that I could explore for myself and been empowered to look into them further’

Encourage anyone suffering with long-term symptoms to keep on pushing for help. Together we can help that 7.5 years to decrease and you can play a part in making sure that people in your life don’t just take dismissal by a health care professional as the treatment they deserve and should accept without question.

Consider your attitude to people you know who often take sick days or who seemingly have unexplained absences. There are so many more invisible illnesses out there other than just endometriosis, but simply putting yourself in someone’s shoes and not assuming you know the full story will hopefully help you to be more generous in your assumptions and help you to treat others better.

If this topic has particularly caught your attention I’d encourage you to donate to Endometriosis UK here.

And as always: knowledge is power.


Endometriosis UK NICE call for improved diagnosis and management of endometriosis 7 September 2017

NICE Endometriosis: diagnosis and treatment September 2017

Sarah Boseley in the Guardian ‘Listen to women’: UK doctors issued with first guidance on endometriosis 6 September 2017

* Christobel Hastings Shay Mitchell’s boyfriend just mansplained childbirth to her, and the internet is not happy 6 September 2019