Endo the Battle: What is endometriosis? The debilitating signs and symptoms to look out for

Endometriosis is an incredibly common condition, with an estimated 1.5 million women affected by the disease in the UK.

However, despite this it takes on average eight years and 10 months to get a diagnosis, and with the numbers of women on gynaecology waiting lists in the UK standing at three-quarters of a million, many patients are left waiting even longer for care.

Here’s everything you need to know about endometriosis, including what we know about the disease, the key signs and symptoms and how it is diagnosed.

What is endometriosis?

Endometriosis is a systemic inflammatory condition where cells similar to the lining of the uterus are found elsewhere in the body, which can cause debilitating symptoms.

It is most commonly found in the pelvis, impacting the pelvic lining, ovaries, fallopian tubes, bowel and bladder, however, it can also impact the diaphragm and the lungs and in rare cases can affect the heart and the brain.

As endometriosis grows this can lead to inflammation and scarring which can cause pain. The tissue can form as superficial lesions, deeper patches known as deep infiltrating endometriosis, or cysts in the ovaries known as endometriomas.

There is no cure for endometriosis but treatments including excision surgery, hormonal medications, pain relief, pelvic floor physiotherapy and dietary changes can help manage symptoms.

How long does it take to get a diagnosis for endometriosis?

Getting a diagnosis for endometriosis can take a long time, in England and Scotland the average delay for a diagnosis is eight years and 10 months, in Northern Ireland this is nine years and five months, whilst in Wales it’s a staggering average delay of nine years and 11 months.

There is no single test that can diagnose endometriosis, whilst ultrasounds and MRIs may be able to identify signs of endometriosis, they may not always recognise smaller or deeply embedded lesions, with a clear MRI unable to rule out the condition.

If you suspect you have endometriosis you can ask to be referred to a gynaecologist who specialises in the condition. Your next step may be a laparoscopy, which is a key-hole surgery where an endometriosis specialist can examine your pelvic organs for any signs of endometriosis.

If endometriosis is found it can be excised (surgically cut away). Depending on your symptoms you may need a multidisciplinary team in place for your surgery, this can include additional surgeons who specialise in areas such as the bowel or bladder, in the UK these centres are called BSGE Centres.

What are the signs and symptoms of endometriosis?

Endometriosis can cause a variety of symptoms including:

• Pelvic pain
• Painful periods
• Painful bowel movements
• Painful urination
• Pain during or after sex
• Low back pain
• Leg pain
• Infertility or difficulties conceiving
• Digestive issues like bloating, diarrhoea, or constipation
• Fatigue

If you suspect you may have endometriosis it’s recommended that you keep a symptom diary to keep track of any symptoms you may have that you would like to address with your doctor.

The impact of living with endometriosis

This Endometriosis Awareness Month, we have launched the Endo the Battle campaign, to amplify the voices of patients with the common condition.

We have been highlighting stories, including how endometriosis has cost one patient and her family an estimated £400K, and another who made a documentary of her journey to get an endometriosis diagnosis.

And we want to hear from you. If you have endometriosis or have experienced symptoms, we’d love to hear your story. You can anonymously share your experience navigating endometriosis via our survey.

The Endo the Battle campaign is being spearheaded by health writer Sarah McCann - read her endometriosis story.

You can find out more about endometriosis, signs, symptoms and how to access support at The Endometriosis Foundation.