LONDON, Oct 19 (Thomson Reuters Foundation) - British lawmakers called on Monday for urgent government action to support 1.5 million women with endometriosis – a debilitating condition that leads to absenteeism from school and work and can cause infertility.
Women’s health experts said the lack of funding for research into the crippling illness - which affects one in 10 women worldwide - showed how women’s health issues were often marginalised.
Endometriosis occurs when tissue similar to the womb lining grows in other places, usually within the pelvic cavity. Symptoms include extremely painful periods, chronic pelvic pain and painful intercourse and bowel movements.
But average diagnosis times in Britain take eight years and have not improved in a decade, according to an inquiry by a cross-party panel of lawmakers in which more than 10,000 people participated.
Girls and women told how the “invisible illness” impacted their work, social life, relationships and mental health with some failing exams or having to quit their jobs.
But when they went to the doctor they were often disbelieved, dismissed or even advised to have a baby.
“Action is needed now, to ensure the next generation with endometriosis are not robbed of the future they deserve,” said Emma Cox, chief executive of the charity Endometriosis UK.
The lawmakers called for the government to invest in research to find the cause of endometriosis, better treatments and an eventual cure.
The government should halve average diagnosis times by 2025 and cut them to a year or less by 2030, the report said. It should also make menstrual health education compulsory in schools so girls recognise the signs of endometriosis.
Most girls and women interviewed had made multiple visits to doctors before getting a diagnosis, and more than half had gone to hospital accident and emergency departments.
The World Endometriosis Research Foundation (WERF) said investment in research was tiny compared to that for conditions like diabetes which had similar prevalence rates.
“Funding is appalling. Women’s health gets downplayed - the minute you say menstruation it gets dismissed,” WERF executive director Lone Hummelshoj told the Thomson Reuters Foundation.
“There’s so little understanding of just how painful and debilitating this condition is. This is not a lifestyle disease. You can get it when you are 12.”
A WERF study estimated endometriosis was costing Britain 14.2 billion euros ($16.74 billion) a year in 2012, mostly due to lost productivity.
Hummelshoj said improving the “horrendous diagnostic delay” would help get girls and women back to school and work.
Nearly 40% of women participating in the All-Party Parliamentary Group on Endometriosis inquiry were concerned about losing their job, while 35% said the condition had reduced their income.
More than two in five teenagers said they had had to take time off school, with one in eight missing exams.
Nine in ten girls and women would have liked access to psychological support, but were not offered it.