Disease, which causes crippling pain and can lead to infertility, affects 176 million women worldwide and currently takes seven to eight years to diagnose
Years of pain, but no diagnosis: one woman’s experience of endometriosis
Doctors are being advised to listen to what women tell them about crippling pelvic and period pain and look out for the symptoms of endometriosis in a bid to speed up diagnosis of a disease that can wreck lives and careers.
It takes an average of seven to eight years to be diagnosed with endometriosis, according to the first-ever guidance on managing a disease that affects one in 10 women from the National Institute for Health and Care Excellence (Nice) in England. Experts say the long wait is the same all over the western world. Many women are told they are making a fuss about normal period pain. Some are unable to work and the disease causes others to become infertile.
The NHS must listen to women, says Nice. If they have symptoms including continuing pelvic pain, severe period pain, pain during sex or they suffer from infertility, endometriosis must not be ruled out. It should not be discounted if the woman continues to say she has symptoms when examinations such as ultrasound scans are negative.
“Delayed diagnosis is a significant problem for many women with endometriosis leading them to years of unnecessary distress and suffering,” said Professor Mark Baker, director of the centre for guidelines at Nice.
“The condition is difficult to diagnose as symptoms vary and are often unspecific. However, once it has been diagnosed, there are effective treatments available that can ease women’s symptoms. This guideline will help healthcare professionals detect endometriosis early, to close the symptom to diagnosis gap and to ensure more timely treatment.”
Experts say the disease has been neglected and misunderstood for decades. In 2015 the Guardian revealed the worldwide scale of the disease, which affects 176 million women, many of whom are living with severe pain which makes it impossible to hold down a job. Others are unable to have children. The former Labour MP Oona King, who was stretchered out of the House of Commons to an ambulance in acute pain on more than one occasion, told the Guardian how she had suffered and was made infertile by endometriosis. Other celebrities who have spoken out include Lena Dunham, Whoopi Goldberg and Susan Sarandon.
Emma Cox, chief executive of Endometriosis UK, said the Nice guidelines are well overdue, but she was glad they had been developed and were clear that the delays in diagnosis were unacceptably long. “During that time women are in pain and suffering, the disease can get worse and there are real mental health issues. If you are told for seven-and-a-half years that you are just making it up and it is in your head, then it has a massive impact on your health and wellbeing,” she said.
Young women have particular difficulty in convincing people they are experiencing anything other than a bad period, she said. “They are told you just need to deal with it. It hurts. Potentially a mum will say that’s just what happens in our family.”
The delays in diagnosis can make treatment more difficult, says Nice. The draft guideline says there should be managed networks for endometriosis care in the community, including GPs, practice and school nurses and sexual health services, all of whom should know the symptoms. Gynaecology services should have people who specialise in endometriosis. Women should be referred to a specialist endometriosis centre if they have confirmed, deep-seated disease.
Lone Hummelshoj, secretary general of the World Endometriosis Society, said the long wait for diagnosis was a global issue. “A diagnostic delay of seven to eight years is unacceptable. We wouldn’t accept that in any other disease,” she said.
“The guideline does highlight that we don’t have the diagnostic tools. That is the truth. I suspect the overall message to physicians is to use their ears more than anything else and listen to what women are telling them. The symptoms are in many respects very clear. They are not normal if they are interfering with your day to day activities, so do seek help.”
Studies were being done to find out the causes and best treatment of endometriosis, but there was little consistency in the collection of data, which should change in line with guidance published by the World Endometriosis Foundation, Hummelshoj said.