Endometriosis takes eight years to diagnose on average – but why?

March is Endometriosis Awareness Month, yet despite the seriousness of the disease and the fact that one in 10 women worldwide suffer from it, it takes an average of eight years to get a diagnosis. That’s eight years of debilitating pain that can severely impact quality of life, preventing enjoyment and participation in normal activities and even causing anxiety and depression.

woman on sofa with endometriosis
Getty Images

Research by Frendo, an endometriosis screening tool and app, found that 63 per cent of sufferers have been made to feel they are lying about their symptoms; 70 per cent admitted to being dismissed up to four times by a medical professional; and 74 per cent claimed medical professionals don’t think their symptoms are ‘serious enough’ for them to act quickly, fuelling the eight year diagnosis delay.

To conceptualise that how long women are waiting for help, wellness brand Intimina created a short film featuring eight-year-old children telling the stories of real life endometriosis sufferers, their age symbolising that damning statistic.

You Magazine’s own investigation into the endometriosis scandal revealed several stories of women living in debilitating agony for years on end with no explanation, including a criminal barrister who was forced to give up her brilliant career because of her endometriosis, and a 31-year-old woman who’s endometriosis was dismissed by doctors for 15 years, advising her it was ‘just a bad period’ and to ‘take paracetamol and use a hot water bottle’.

So why does it take so long to diagnose endometriosis?

Dr Harriet Bradley, Medical Director at the digital healthcare provider Livi, says, ‘Diagnosing endometriosis is a multi-stage process, whereby a doctor will first ask about symptoms, before referring the patient for further testing such as a pelvic ultrasound scan. The final stage of diagnosis is a laparoscopy, a form of keyhole surgery, to visually check for the presence of endometriosis lesions.’

woman suffering with endometriosis
Getty Images

She added that, ‘Menstrual symptoms and chronic pelvic pain provides the basis for suspecting endometriosis. Sometimes these symptoms go undiagnosed, particularly in the early stages because they can be mistaken for menstrual pain by women and some healthcare professionals.’

But a huge factor is that women’s pain is routinely dismissed as ‘normal’ – and we can’t help but wonder if this would happen were the same symptoms to be experienced by men.

Dr Bradley says, ‘Research shows that women are less likely to be treated for pain than men and we need to ensure that patients’ concerns are not minimised or disregarded. Training GPs in how to identify potential cases of endometriosis would have a positive impact on reducing diagnosis time, as this would lead to an earlier referral for scans and a specialist opinion.’

What can be done to speed up the process?

Dr Bradley says, ‘It’s always OK to ask for a second opinion if you are unhappy with the outcome of your consultation or if your symptoms continue. Your GP can refer you to another healthcare professional for a second opinion, or you may choose to refer yourself privately to a specialist.’

But ultimately, she admits that, ‘more education and awareness is needed across society to stop normalising menstrual pain.’

Frendo CEO and founder, Dearbhail Ormond, agrees: ‘There is still extensive work to be done in educating people about endometriosis – at all levels, the general public as well as the medical profession. More than 40 per cent of Brits heard about endo from the news or social media and I strongly believe this is thanks to the brave stories told by high-profile people who have come out and shared their story, such as Alexa Chung and Emma Bunton.

‘More needs to be done at a grassroots level and – like 87 per cent of those we spoke to – I want to see more reproductive health education added to the curriculum – something I am working hard to achieve through Frendo.’

doctors appointment
Getty Images

If you suspect you are suffering from endometriosis, Dr Rhianna McClymont, Lead GP at Livi, says keeping a diary of your symptoms ahead of your GP appointment can help you to get the most out of it.

She says the symptoms to look out for include:

  • Painful periods (dysmenorrhea) – pain in the lower tummy and back (called pelvic pain) which may start before your period and continue during it
  • Heavy periods – heavy bleeding during your period or bleeding between periods (intermenstrual bleeding)
  • Pelvic pain – pain in the lower abdomen (tummy) and back
  • Painful sex – pain experienced during or after intercourse
  • Discomfort while peeing or pooing – during your period, you may experience pain with urination or bowel movements
  • Other symptoms include feeling sick, constipation, diarrhoea, bloating, and tiredness

For more information on endometriosis, visit the NHS website