Women experiencing severe period pain should be checked by their GPs for signs of endometriosis, according to new NHS guidance.
Around one in 10 women of reproductive age are estimated to suffer from endometriosis, a chronic medical condition where the lining of the womb grows in other parts of the body, such as the fallopian tubes, ovaries, stomach, bladder or bowel.
‘Endo’ can cause debilitating pain and damage women’s fertility, but it is often missed or misdiagnosed by doctors. A damning investigation published by a parliamentary committee earlier this year found that 40% of women have to see a doctor more than 10 times before being diagnosed, with GPs often dismissing women’s health concerns.
According to the National Institute for Health and Care Excellence (Nice), the average patient currently has to wait seven and a half years before being correctly diagnosed – during which time the disorder can become much harder to treat and seriously disrupt lives and careers.
Now, Nice has advised GPs to consider that a woman may have endometriosis even if she only reports one symptom, such as severe period pain.
Emma Cox, chief executive of Endometriosis UK, told The Guardian that the new Nice guidelines are welcome, but well overdue. Women have been experiencing unacceptably long waits for diagnosis for too long, she said. “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,” Cox continued.
The new guidelines recommend a number of ways doctors can achieve a speedier diagnosis of endometriosis, such as ultrasound and laparascopy (a small surgical procedure to examine the organs inside the abdomen).
GPs have also been told not to dismiss the possibility of endometriosis even if abdominal and pelvic examinations or ultrasound or MRI scans come back showing ‘normal’ results.
As well as debilitating period pain, other symptoms of endometriosis include difficulty getting pregnant and pain in the abdomen, pelvis, lower back, between the hips or at the tops of the legs. Women may also experience pain during and after sex, or while going to the toilet, if they have the disorder.
Very heavy periods, bleeding between periods and bleeding from the rectum can also be endometriosis symptoms.
Lone Hummelshoj, secretary general of the World Endometriosis Society, said that the delay in diagnosis of endometriosis would be unacceptable “in any other disease”.
“I suspect the overall message to physicians is to use their ears more than anything else and listen to what women are telling them,” she said.
“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.”
“We’re taught to put up and shut up”
Chloe Browne, 37, was diagnosed with endometriosis in 2016, after years of debilitating period pains. She says it’s about time the condition was taken seriously.
“When I first went to my GP, aged 14, about my period pains, I was told they’d go ‘once I had my first child’. Well, guess what – I’m not planning on having kids. I know ladies who’ve been told it’s ‘just part of being a woman’. I’ve been fobbed off with stronger and stronger painkillers, put on oral contraceptives, and told I might have PCOS.
It was only when I insisted on referral to a gynaecologist, and later a second referral to an endometriosis specialist, that I received an accurate diagnosis of endometriosis, possible adenomyosis and specialised excision surgery for endometriosis.
We’re taught to put up with it and shut up, partly because we don’t talk enough about what is still considered a taboo subject by many. You have to ask yourself – if a condition that caused such severe, disabling pain affected up to 10% of men, would we be facing the same problems with late diagnosis, and lack of funding into research and treatment?
Widening the discussion and increasing knowledge about endometriosis amongst medical professionals can only be a good thing. Let’s challenge the stigma and encourage more research and funding into the treatment of endometriosis.”
Images: iStock / Rex Features