As many as three in four women (75%) say they would not go to a doctor about potential endometriosis symptoms, with a significant minority (21%) saying this is because they don’t believe they would be taken seriously.
The worrying findings have come from a survey of 2,000 UK adults by the charity Endometriosis UK to coincide with Endometriosis Action Month this month (March).
Potential endometriosis symptoms can include chronic pelvic pain, painful bowel movements, pain when urinating, painful sex, fatigue and difficulty getting pregnant.
The 75% figure for women and those assigned female at birth rose to 92% among those aged 16-34, the survey also found.
Among those who said they would put off going to see a doctor in this situation, a quarter (24%) said it was because they considered painful periods to be a normal part of life.
A similar percentage (23%) said they would think it was “not serious enough to bother a doctor with”.
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Currently, it takes an average of eight years to get a diagnosis of endometriosis in the UK, the charity has said.
“These findings must be a wake-up call for society as a whole, including governments and the NHS: we cannot continue to ignore and normalise the sometimes debilitating symptoms of endometriosis, and the impact of this disease and other menstrual health conditions,” said Emma Cox, CEO of Endometriosis UK.
“With an average time to diagnosis of eight years, urgent action is needed to ensure all those affected by endometriosis have a prompt diagnosis and access to the right care.”
An increasing number of organisations and employers are being proactive, however, including joining the charity’s Endometriosis Friendly Employer scheme.
More positively, researchers in England and Scotland have been awarded nearly £250,000 by Wellbeing of Women and the Scottish Government to investigate if a drug called dichloroacetate is an effective treatment for endometriosis
If successful, the drug could be the first ever non-hormonal and non-surgical treatment for endometriosis – and the first new treatment in 40 years.
A clinical trial to study a potential new treatment for endometriosis is set to go ahead, led by researchers from the universities of Edinburgh, Aberdeen and Birmingham.
Dr Lucy Whitaker, Wellbeing of Women researcher and clinical lecturer in obstetrics and gynaecology at The MRC Centre for Reproductive Health at the University of Edinburgh, said: “We know women with endometriosis desperately want more treatment options and better ways to manage the often-debilitating pain that it causes.
“Our research so far shows promising results that dichloroacetate can make a huge difference. I hope our new trial will confirm this and give women hope that new treatments and a better quality of life are on the horizon,” she added.