A GROUP created to help support people living with a painful condition has now become a registered charity.
Formerly known as Endo Borders, Endometriosis South of Scotland (Endo SOS) is the first charity in the region to serve people living with endometriosis and their loved ones.
Founded in 2019 by Tao McCready, Endo SOS first began as a support group, but now Tao and her team of volunteers are working harder than ever to break the stigma around the condition and end the long diagnosis wait times.
“It’s not too late for the next generation, they need to be saved now,” said Tao.
She discovered her group had been given charitable status from her hospital bed on June 1, after undergoing endometriosis-related surgery following an earlier stay in A&E in March this year.
Tao said: “I woke up from surgery and found our application has been accepted.
“It’s a huge achievement, but I’m always conscious there are more people out there.
“It feels fantastic.”
Tao, 38, added that the group has grown since it was first founded, and has around 1,800 online members.
“We started [the group] with only four people,” she said.
“We have also got members who are not on social media so our membership is really almost 2,000.
“It’s very humbling that people out there want to follow us and raise awareness locally about endometriosis.”
Tao spent 17 years in pain being misdiagnosed before she was finally diagnosed with endometriosis – a condition which sees cells similar to the ones in the lining of the womb found elsewhere in the body.
Endometriosis is very common, affecting one in 10 women and people assigned female at birth, and can cause chronic pain, infertility, bowel complications, chronic fatigue, and mental health issues.
“The average is eight and a half years to diagnose in Scotland,” said Tao.
One of the important issues Tao and Endo SOS are working towards is ending the stigma faced by those with endometriosis.
And this can often come from those trying to help patients.
Tao, and others supported by the charity, have shared stories of being medically “gaslit” by people not believing or downplaying the pain and other symptoms they experience.
She hopes that the charity can work towards improving the learning material available to trainee doctors, and that the organisation can also provide school resources to help young people recognise the signs of endometriosis sooner and help them advocate for themselves.
For more information on the work Endo SOS is doing, visit www.endosos.org
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