A BORDERS woman uses her experience with endometriosis to help others in the region.
The menstrual condition causes the endometrium – tissue similar to that that lines the uterus – to grow away from the uterus.
Tao McCready from Selkirk was diagnosed with endometriosis in 2017 and founded the Borders Endometriosis Support Group in 2019.
“I realized very quickly that there was nothing within the limits that could support people,” she said.
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Endometriosis affects 1 in 10 people, but the disease is not widely discussed, Tao says.
“People don’t see us,” she said. “They think the pain is only when we are on our periods, but the symptoms can be all the time.
“It’s so common, but it doesn’t talk about what makes me angry.”
It was 17 years before Tao received her diagnosis. During this time, she was misdiagnosed with irritable bowel syndrome and borderline personality disorder.
Now she lives with an extreme form of the disease that causes chronic pain, fatigue, and mood swings. It also made them sterile.
“The average time to diagnose is eight years,” Tao said. “Now the wait is very long.”
After everything she had been through, Tao was determined to offer others the support she wanted.
After Tao founded the two Borders self-help groups (one public and one private) in 2019, she completed her training at Endometriosis UK last year.
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“I found great comfort in leading the group,” said Tao. “It helps with my pain management. In my mind we might live in fear or do something. So I had to do something to help.
“It was a breeze – I had to do that.”
At the beginning of 2020, Tao should have an operation to help with her endometriosis. However, due to the coronavirus pandemic, treatment has been postponed.
A three-inch ovarian cyst burst during lockdown, and Tao had to wait another four or five months for her surgery to be rescheduled.
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The open Facebook group “Endometriosis Awareness in the Scottish Borders” is used as a platform for Tao and her co-leader Lorna to raise awareness about endometriosis.
However, the closed group – “Endo Borders – Support” – is a place where anyone with this disease, regardless of gender or age, can come together, ask for support or just think about their struggles.
And Tao leads her group a little differently than many other self-help groups.
“We give a little different support,” she said. “I can be reached around the clock.
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“In November I had a video call with a parent who took their daughter to A&E and doctors did nothing – they didn’t listen to her.
“It was 2am and she was upset.
“I did some breathing exercises with her and was told that she returned to the doctor with all her might.”
While the Borders Endometriosis Support Group is currently unable to meet for their usual face-to-face meetings, over the past year they have hosted virtual meetings and support through social media, and Tao has also organized webinars that feature special guests for discussion have partnered with members.
Despite the bumps in the road created by the lockdown, Tao is determined to reach out to all frontier commuters who may be struggling with endometriosis and need help.
“I know there are more people out there,” she said. “If one in ten of us has, I don’t have enough members by our group numbers.
“I want to raise awareness of the condition and the group. I want people to know that they are not alone.
“Everyone needs support in different ways, that’s why we do a variety.”
For more information on Endometriosis and Support within the Borders, please visit the Endometriosis Awareness in the Scottish Borders Facebook page.
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