WOMEN who suffer from the painful womb condition endometriosis have called for better diagnosis and research to find a cure.
The agonising condition affects 176 million women worldwide – two million of those are in the UK.
Endometriosis is a chronic condition which occurs when tissue which behaves like the lining of the womb is found outside of the womb – in areas of the body including the ovaries, fallopian tubes, the abdomen and the bladder.
A major consultation by the University of Edinburgh has pinpointed ten priorities for future research into the disease.
Researchers asked those who suffer with the disease to name research questions that would be most beneficial to them.
Understanding how to best manage the emotional and psychological toll of the disease was identified as a key priority.
Other priorities included better tools for diagnosis – which currently requires surgery and can take years to identify.
Although endometriosis is as common in women as diabetes and asthma, it fails to attract the same attention, support and funding as those diseases, the researchers said.
The All-Party Parliamentary Group on Women’s Health released a report in April that found about 40 per cent of women with endometriosis visited their doctor ten times before they were referred to a specialist.
It also noted that, for 10 per cent of women, it takes 15 years of seeking help to receive a diagnosis.
Professor Andrew Horne, of the Medical Research Centre for Reproductive Health at the university, said: “This important project will raise awareness of endometriosis and drive investment into research that matters most to women living with this debilitating condition.”
The exact cause of endometriosis isn’t known, but it’s thought it could be hereditary or due to environmental factors – namely the presence of dioxins in the environment.
Endometriosis can sometimes cause damage to the fallopian tubes or ovaries, leading to fertility problems.
Other complications can include painful ovarian cysts and adhesions – areas of tissue which can fuse organs together.