Endometriosis is an incredibly common condition, but is notoriously under-diagnosed. It is thought that it takes on average 8 years for women in the UK to be diagnosed with endometriosis after their first presentation to their GP (1) This article will outline what endometriosis is – and why it takes so long to be diagnosed.

What is endometriosis?

Endometriosis is a condition whereby endometrial-like tissue (similar to that found inside the womb known as, the endometrium,) grow in other parts of the body including the pelvic cavity, on the ovaries, bowel or bladder, and sometimes (but very rarely) on the liver and  lungs (2). As this tissue is similar to that found in the uterus, it still responds to the hormone fluctuations of the menstrual cycle, and so each month the tissue builds up, breaks down, and causes bleeding. This causes inflammation and irritation to the surrounding tissue, leading to pain and often the formation of scar tissue.

Unfortunately the exact cause is unknown but there are several theories and many possible factors including genetic, immunological, hormonal and lifestyle. If your mum or sister have it, your risk of having it is higher. 

How common is endometriosis? (3)

About 10% of women are thought to suffer with endometriosis. The numbers of sufferers in the UK are similar to the number of people suffering with diabetes, and the awareness levels of both conditions are vastly different! Endometriosis costs the UK a staggering £8.2 billion per year in healthcare costs and loss of work days (3). 

What are the symptoms of endometriosis? (2)

• pain your abdomen or pelvis, normally worse around your period

• heavy vaginal bleeding

• pain during sex

• difficulty getting pregnant

• bleeding from other places such as in your stool or urine

Some women do not have any symptoms and the severity of disease doesn’t always correlate well with the severity of symptoms.

How is it diagnosed?

The only definitive way to diagnose it is via laparoscopic, or keyhole, surgery to see inside the pelvic cavity. As this is quite invasive, it is one of the reasons why there is a delay from onset of symptoms to diagnosis. There is research ongoing into less invasive ways of testing.

What kind of treatments may be offered? (4)

• Painkillers such as paracetamol or ibuprofen

• Tranexemic acid or mefanemic acid which can help with pain and bleeding

• Hormonal treatments

• Ablation – which is surgical removal of the abnormal tissue

• Hysterectomy – removal of the womb itself

Why does it take so long to be diagnosed?

Despite the fact that endometriosis affects as many as 1 in 10 women, a recent inquiry in the UK found that it takes on average 8 years to get a diagnosis, despite over 58% of women visiting their GP ten or more times with symptoms, 53% visiting A&E with symptoms, and 21% seeing doctors in hospital ten or more times with symptoms (5). It’s not just the UK either, as similar delays in diagnosis are seen across the world.(6).

The reason for this is not because doctors are trying to dismiss patients but largely due to the fact that endometriosis is very difficult to diagnose. 

As a GP, endometriosis may not have any clinical signs which we can detect in Primary Care at all. A lot of the suspicion about endometriosis will come from the history which patients give. For a lot of women, the pain they experience may have been present for years and hence they don’t know what is normal. We, as a society, also need to stop normalising pain surrounding menstruation. My guide is that if you have to take time off work or school for your periods, the pain causes vomiting, or the pain does not respond to simple painkillers such as paracetamol/ibuprofen, I would consider that this may be abnormal. Simply put, if your periods are negatively impacting your life, or are difficult to manage, it is worth a conversation with your doctor. 

GPs may offer to treat your symptoms with medication, for example, medication to reduce pain or hormonal contraception. Sometimes women see this as a way of ignoring the cause of their symptoms, but if getting a definitive diagnosis is important to you, it is important to let your GP know this, that you would like a definitive diagnosis. Some women want the symptoms controlled, but others prefer to understand the ‘why’ before treating symptoms.

Tips to help you to get the most from your GP appointment with painful periods

If you have painful and heavy periods and you are concerned about a diagnosis of endometriosis, do tell your GP exactly that. This will help them to point you in the right direction. Generally speaking, women with heavy or painful periods will have blood tests to check your iron levels as well as an ultrasound scan to look at your womb and ovaries. It is also important to ensure that you are up to date with your smear tests and sexual health screens. After this, you may need onward referral to a gynaecologist who can arrange further tests such as the laparoscopy mentioned above. 

If you are concerned about endometriosis, keeping a symptom diary can be really helpful. Endometriosis UK have got a sample to use which may be helpful.

We have explored more on how to get the most out of your GP appointment here.

Do you have endometriosis?

If you have endometriosis, there are good resources for support from Endometriosis UK, including support groups, hearing from other patients, fertility advice and more is available here 

To find more about diet and endometriosis check out Dr Hazel’s book The Female Factor here.