It can take years, and even decades, for an official diagnosis of this extremely painful condition
The NHS has warned of three key signs of a potentially debilitating health condition affecting around one in 10 women in the UK, as new statistics show it is wildly underdiagnosed. According to findings from the Office for National Statistics (ONS), only around two percent of reproductive age women were diagnosed with endometriosis between 2011 and 2021.
However, health bodies state the painful chronic disease actually affects 10 percent of women, with around 176 million people living with it worldwide. The World Health Organisation (WHO) describes endometriosis as a disease in which tissue similar to the lining of the uterus grows outside the uterus.
“It can cause severe pain in the pelvis and make it harder to get pregnant,” it says. “With endometriosis, tissue similar to the lining of the uterus grows outside the uterus. This leads to inflammation and scar tissue forming in the pelvic region and (rarely) elsewhere in the body.”
The latest ONS data also added that the average age of diagnosis is 35, which is often years – sometimes even more than a decade – after the first symptoms begin. “Using 2011 Census data linked to hospital records from 2011 to 2021, we estimate the prevalence of an endometriosis diagnosis to be approximately two percent of reproductive age women in our linked population, with an average age at diagnosis of 35 years; this is likely an underestimate of the true prevalence, as many women will not have a diagnosis,” the ONS said.
With this in mind, the NHS warned that some of the symptoms can occur around the time of your period. These can include:
- Severe period pain, that stops you from doing your normal activities
- Heavy periods, where you need to change your pads or tampons every one to two hours, or you may bleed through to your clothes.
- Pain when you poo or pee
However, these are not the only potential signs. You can have other symptoms at any time in your menstrual cycle, such as:
- Pain in your lower tummy and back (pelvic area)
- Pain during or after sex
- Extreme tiredness (fatigue).
The NHS adds: “You may also have difficulty getting pregnant and have low mood or anxiety. Endometriosis is commonly diagnosed in women and girls, from when their periods start (puberty) through to menopause. It can affect anyone who has periods.”
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You should see your GP if:
- You think you might have endometriosis
- Your symptoms are affecting your everyday life, work and relationships
- You’ve had treatment from a GP but your symptoms do not get better, or get worse
It can take a long time to diagnose endometriosis, the NHS says. You might need several different tests to find out if you have it. This is because endometriosis symptoms can be similar to other conditions, such as:
- Adenomyosis
- Fibroids
- Pelvic inflammatory disease
- Irritable bowel syndrome
In response to the NHS figures, Emma Cox, the chief executive officer of charity Endometriosis UK, said she hoped the findings would encourage the Government to place more seriousness on the condition. “We’re delighted that the Government and the ONS has recognised the significance of endometriosis, and decided to commission high-quality statistical evidence to ensure a better understanding of the disease’s impacts, including how it impacts different communities,” she said.
“The relative lack of both data and research into endometriosis has historically made it easy to overlook or fail to grasp the seriousness of the disease – without strong evidence, decision-makers in healthcare and other sectors have either not recognised the scale of the issue, or not been able to argue for investments to support those with endometriosis.
“That is now changing. Today’s initial report from the ONS, combined with other recent research such as the NHS Confederation’s report on the economic benefits of investing in women’s health services and other reports, are building up a picture that will be impossible to ignore.”
An upcoming ONS publication in January is set to provide further data including on the impact of endometriosis on employment and jobs.