Oldham-led survey shows worrying lack of awareness around female health condition endometriosis

It affects 176 million women worldwide and blights lives, ends careers and destroys relationships.

Yet a new survey says that while people have heard of the word “endometriosis”, some think it is solved by taking a couple of tablets, others believed the gynaecological condition was a throat infection and most disturbingly, a few reckoned it was nothing to worry about.

The emerging cause behind the study Endometriosis Awareness North also revealed that getting men to talk about the condition was “like getting blood out of a stone".

“We had heard from sufferers that the excruciating stomach cramps, endless bleeding and draining depression caused by endometriosis was tragically misunderstood by the public” said Chadderton GP Dr Anita Sharma, co-creator of the campaign.

"Now it is here in black and white.

"Perhaps the problem of COVID and concerns about cancers being missed are taking priority – but that’s no excuse to avoid this debilitating condition.”

The survey showed:

• 91% had heard of endometriosis

• 10% wrongly believed it affected both men and women – with a couple of respondents deciding it was a male-only condition

• 92% knew it was to do with gynaecology though others thought it was a cancer, blood disorder or virus

• 15% thought you would need an operation to cure it, while a further 15% espoused it meant you can never have children. Six reasoned it meant there was nothing wrong with you, whilst that number also believed it meant you were DYING

Endometriosis sees tissue similar to the inner lining of the uterus grow outside the uterus.

This results in pelvic pain and irregular menstrual cycle.

Oldham woman Courtney Ormrod was disappointed, though not surprised by the findings.

“Endometriosis has meant me missing out on an education and a career in teaching," she said. 

"It has also had me doubled-up in pain, pretty much constantly bleeding and even blacking-out and nearly choking to death.

"I have had suicidal thoughts.

"Yet some people just think it is heavy menstrual bleeding or even me craving attention."

Courtney began a social media campaign to help fellow so-called “Endo-Warriors”, which has now won the support of her local surgery and hospital – and has begun to get invitations to speak at events and NHS training sessions.

The 300 respondents to the survey were made up equally of younger and older folks, educated to degree level or otherwise.

Where the big discrepancy came, was in getting men to contribute.

“As a small growing concern, we tried everything to get men to engage, but their reluctance was palpable," added Dr Sharma.

"Endometriosis can destroy the lives of their sisters, partners and mothers (it doesn’t just harm those of child-bearing age) and yet there was barely a flicker of interest.

“Ironically though there is a lot we can learn from men, as displayed by all of their work on bowel cancer awareness. There has been far greater visibility around this condition of late and men seem less reticent to talk to their doctor about it.

"Unless we make endometriosis similarly important, women will continue to suffer physical discomfort, mental anguish and the real possibility of infertility.”

Dr Gaity Ahmad, Consultant Obstetrician and Gynaecologist, and Lead Endometriosis Centre at the Royal Oldham Hospital, said: “Endometriosis can take up to seven years to diagnose properly.

"That is the first obstacle to overcome.

"We must make sure that women who present at surgery with symptoms are referred to an endometriosis specialist as soon as possible.

"Endometriosis is a chronic condition which is ill recognised and poorly treated.

"Women need to be referred to clinicians with interest in laparoscopic surgery, preferably within an endometriosis centre.”

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