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MPs have launched an inquiry into endometriosis – and they need your help

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Lauren Geall
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A woman with endometriosis

A new inquiry launched today (10 February) aims to uncover the challenges faced by people living with endometriosis, and find out what steps need to be taken to improve care.

The statistics on endometriosis are so shocking that, at first, people often find them hard to believe. The condition, which causes a growth of endometrial-like tissue (the lining of the womb/uterus) outside of the uterus, affects 1 in 10 women in the UK (and 176 million worldwide) – but it takes, on average, seven and a half years to diagnose.

Why? It’s certainly not because the condition is inconspicuous and non-symptomatic; while some women may experience few or no symptoms, for others, it can be debilitating, with symptoms including painful and irregular periods, pain during or after sex, painful bowel movements, fatigue and difficulty getting pregnant.

These symptoms are caused when the endometrial-like tissue which lies outside of the uterus react to the menstrual cycle in the same way as those in the womb, building up and then breaking down and bleeding. However, unlike those cells in the womb, which escape in the form of a period, the cells outside of the uterus produce blood that has no way to escape, leading to inflammation, pain and the formation of scar tissue. 

So why are so many women waiting so long to get a diagnosis? The answer, it seems, is two-fold. While, according to the NHS, other conditions share similar symptoms to endometriosis, making it difficult to diagnose (the only definitive way to diagnose endometriosis is with a laparoscopy), other people have argued that the lack of speedy diagnoses comes down to age-old assumptions about women’s health which mean many GPs are unaware of what “normal” period pain really is.

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In fact, a couple of years ago, a report by the All-Party Parliamentary Group (APPG) on Women’s Health revealed that women’s symptoms are often “dismissed” by doctors, with 42% saying that they did not feel they had been treated with “dignity and respect” by healthcare professionals.

With all this considered, one thing’s for sure: waiting seven-and-a-half years for a diagnosis simply isn’t good enough, and something needs to be done to change that.

A woman dealing with endometriosis
Endometriosis: a new inquiry launched today aims to learn more about the challenges faced by people dealing with the sometimes debilitating disease.

In light of this massive problem, today MPs have launched an inquiry to investigate the challenges faced by the 1.5 million women diagnosed with the disease in the UK – and reduce those challenges for future generations. The inquiry, which will be led by the APPG on Endometriosis with support from the charity Endometriosis UK, aims to find out what steps the Government needs to take to turn the problem around.

“The APPG is delighted to give women with endometriosis and healthcare experts the opportunity to share their first-hand experiences of endometriosis so we can produce a set of recommendations to the Government,” said Sir David Amess MP, Chair of the APPG on Endometriosis. “The APPG is committed to raising awareness of the condition and representing the views of those affected and we urge as many people to come forward as possible to respond to the inquiry.”

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Emma Cox, CEO of Endometriosis UK, added: “This inquiry is a welcome opportunity for the Government and NHS to get real about the impact of endometriosis on individuals and society, and to take it seriously. The Inquiry provides the Government with the opportunity to deliver recommendations for much needed improvements for the diagnosis, treatment and support of 1.5 million women living with the disease – and reduce the suffering of future generations.

“We urge all people with endometriosis to take part in the survey. This is a huge opportunity to push for real change for people affected by endometriosis and shape the way care is delivered in the future.”

You can get involved with the inquiry by answering the survey, which can be found here.

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