Endo The Battle: National World launches endometriosis campaign - and we want to hear from you
Did you know that if you had your first symptom of endometriosis today, you likely wouldn’t receive a diagnosis until 2034?
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The average waiting time to get an endometriosis diagnosis is staggering, but despite this, many patients are now facing even further delays to access healthcare.
Living with endometriosis is an uphill battle, from getting a diagnosis to navigating daily life and even accessing healthcare. This Endometriosis Awareness Month, National World is launching the Endo The Battle campaign to amplify the voices of patients with the common condition.
We are telling the stories of those who have had to seek care in the private healthcare sector, or travel abroad, to make those in power aware of the huge impact this can have on both them and their families.
In November 2024, new research revealed that waiting lists for gynaecology in the UK had doubled, with around three-quarters of a million women waiting for an appointment. The average waiting time for an endometriosis diagnosis in England and Scotland is eight years and 10 months, in Northern Ireland this is nine years and five months, whilst patients in Wales face waits of nine years and 11 months.
With so many people left languishing on lists, we have spoken to endometriosis patients across the UK who have paid privately or even travelled abroad for essential healthcare they should be able to access on the NHS.
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 takes on average eight years and 10 months for an endometriosis diagnosis in England and Scotland, nine years 11 months in Wales and nine years and five months in Northern Ireland.
Symptoms can include:
painful periods
painful bowel movements
painful urination
pain during or after sex
infertility
chronic fatigue
An estimated 1.5 million women in the UK are affected by endometriosis, which is a systemic inflammatory condition where cells similar to the lining of the uterus are found elsewhere in the body. This can cause painful symptoms such as chronic pelvic pain, painful periods, painful bowel movements, painful urination and painful sex, it can lead to chronic pain, poor quality of life, infertility and other complications when left untreated.
Living with endometriosis also comes with a huge financial impact. In February, the Office for National Statistics found that those with the condition experienced a significant decrease in earnings, which makes seeking and funding private care even more difficult.
Share your story
If you have endometriosis or have experienced symptoms, we’d love to hear your story. We are collecting the experiences of those living with endometriosis and who have to pay privately or travel for care. You can anonymously share your experience navigating endometriosis via our survey.
We will be collecting the responses to share in an open letter to health ministers in England, Wales, Scotland and Northern Ireland to highlight the reality of navigating care - and call on those in power to end the battle.
The Endo the Battle campaign is being spearheaded by health writer Sarah McCann - read her endometriosis story.
If you have been affected by the content of this article or suspect you may have endometriosis you can find out more about the signs and symptoms and what support is available at the Menstrual Health Project.
