‘Endo Gals’ and Derry & Strabane Mayor highlight impact of endometriosis

‘Endo Gals’ is a programme which has been provided for women with endometriosis by Derry Well Woman since 2018. The group meets on the last Tuesday of every month.

Participants were greeted by the Mayor at the Guildhall on Monday evening and had tea in the Mayor’s Parlour before walking to the Council council offices on Strand Road, which had been lit up especially for Endometriosis Action Month.

Mayor Logue said: “March is Endometriosis Action Month, a disease that affects one on nine people born with a uterus. I am so happy to support these amazing women, and shine a light on something that it still takes 10 years in NI to get a diagnosis.

"We need a women’s health strategy to get these women diagnosed and treated quickly and effectively.”

New research published by Endometriosis UK this month revealed that getting a diagnosis for endometriosis now takes almost a year longer than before the pandemic.

The new study shows that diagnosis times in the UK have significantly worsened over the last three years, increasing to an average of eight years and 10 months, an increase of 10 months since 2020.

This lengthy wait means a delay in accessing treatment, during which the disease may progress, leading to worsening physical symptoms and a risk of permanent organ damage, the organisation warned.

The new report, which is based on a survey of 4,371 people who have received a diagnosis of endometriosis shows shows that the average wait time in Northern Ireland is even worse than the average at 9 years and 5 months.

Almost half of all respondents (47%) had visited their GP 10 or more times with symptoms prior to receiving a diagnosis, and 70% had visited five times or more.

Only 10% of respondents reported that GPs mentioned they suspected endometriosis at either their first or second appointment where symptoms were discussed.

A total of 52% had visited A&E at least once, and fewer than a fifth of those (17%) were referred to gynaecology at their first visit. 26% of respondents visited A&E three or more times with symptoms prior to diagnosis.

Emma Cox, CEO of Endometriosis UK, said: “Taking almost nine years to get a diagnosis of endometriosis is unacceptable. The theme of Endometriosis Action Month 2024 is ‘could it be endometriosis?’. Raising awareness of the symptoms of endometriosis with the general public, along with healthcare practitioners and those in charge of health services, will be a step towards shortening very lengthy waits.”

“Our finding that it now takes even longer to get a diagnosis of endometriosis must be a wake-up call to decision makers to stop minimising or ignoring the significant impact endometriosis can have on both physical and mental health. Now is the time to reverse the trend and make commitments to drive down diagnosis time for endometriosis and other menstrual health conditions.”

Endometriosis UK’s report contains several recommendations for improving diagnosis times, including: calling on the four Governments of the UK to commit to a target of an average diagnosis time for endometriosis of one year or less by 2030 and urging NHS commissioners and providers to urgently drive down gynaecology waiting times. They have also called for all healthcare practitioners to receive training on menstrual health and endometriosis awareness, and are asking governments ain Northern Ireland and in Britain to invest in public health education campaigns helping people to recognise the most common endometriosis symptoms.

More investment into research to find the cause of endometriosis, improve treatments and find better ways to diagnose the disease is also being lobbied for.

In response to the report, Ranee Thakar, President of the Royal College of Obstetricians and Gynaecologists (RCOG), says: “Endometriosis can have significant impacts on every aspect of womens’ lives – and timely diagnosis is crucial to ensuring that treatment and wider support can be in place to limit the progression of disease and manage symptoms.”

In response to the report, the Minister for the Women’s Health Strategy, Maria Caulfield said more must be done to improve women’s experiences of the healthcare system, “and for those women suffering from endometriosis we have a long way to go”.

“We launched our Women’s Health Strategy to do just this – listen to women.

"Endometriosis is a priority area within our strategy, so expect to see more in this space. In addition, we are rolling our Women’s Health Hubs across the country to support more women with specialist care required with this condition.”

“Through the Women’s Health Strategy, we are working to turn dismissed, ignored and belittle into listened to, understood and empowered.”

Endo Gals at Derry Well Woman meets on the last Tuesday of every month. Anyone wishing to know more or who feels they could could benefit from the space to come and talk about your diagnosis please contact Patricia at 028 7136 0777.