Around one in ten women around the world suffer from endometriosis, making it a relatively common disease. And yet, despite this it can often take years to diagnose – in the UK, the average time from onset of symptoms to clinical diagnosis is between eight and ten years.
That means many women are spending up to a decade of their lives suffering from painful symptoms such as pelvic pain, bowel and bladder problems, when they could be receiving treatment. So why does it take so long to diagnose endometriosis?
Endometriosis symptoms can be embarrassing
There is no way that patients can be held accountable for the delay in diagnosis. However, one issue is that the symptoms involved can often be ones that we would prefer not to discuss publicly: pain during sexual intercourse, painful periods, bowel and bladder problems.
Many of the symptoms of endometriosis are considered ‘normal’
Painful periods, for example, are often just accepted as a fact of life, and so women don’t think to mention them to their doctor, just as doctors – including gynaecologists – often don’t think to enquire about menstrual pain.
For many women, bowel problems are also just an uncomfortable part of their daily life, as food intolerance and IBS are often dismissed or overlooked by doctors.
Endometriosis is not well recognised
Even among clinicians, there can be a lack of awareness around endometriosis. As most of the symptoms could also be associated with something else, it often does not occur to doctors or patients that endometriosis could be the cause.
If public awareness of endometriosis were greater, women might be more likely to go to their doctor about their symptoms, and doctors would be more likely to refer them for the n necessary tests. However, there is another problem that causes delays in diagnosis.
There is no simple test for endometriosis
Because the only definitive way to diagnose endometriosis is to establish the presence of ‘endometriotic lesions’ – that is, the existence of womb-like tissue outside of the womb – it can only be confirmed by a surgical procedure.
Unfortunately, within public health services, the surgery involved is categorised as of low importance, which leads to further delays. Add to this the fear many of us have around undergoing surgical procedures, and it’s understandable that many women prefer to stick with the pain they have become used to.
How to get endometriosis diagnosed quickly
If you think you might be experiencing symptoms of endometriosis, here are some ways to ensure you get a diagnosis in good time:
- Keep a diary of your symptoms: if you are experiencing any of the symptoms associated with endometriosis on a regular basis, keep track of them in a diary so that you have something to show the doctor
- Choose a doctor with the right kind of knowledge: your GP might not be fully familiar with endometriosis and its symptoms, so ask to be referred to a specialist, or book into a private women’s health clinic
- Be open about your concerns: if you think your symptoms could be attributed to endometriosis, say that outright to your doctor. If they aren’t familiar with the disease, it might not occur to them otherwise