A Tandragee woman who spent almost a decade seeking answers for severe period-related pain has started an endometriosis support group for people in the Craigavon area.
Grace Abbott began experiencing pain alongside her periods when she was nine. She said she was told it was simply what life would be like for her, but by the age of 15 she was regularly being taken to hospital because of pain and vomiting.
The 25-year-old was told at that stage that the problem was probably a ruptured cyst. As her symptoms became worse, she continued to seek medical help, including after a hospital admission last year when she became seriously unwell.
A long search for answers
Grace said a CT scan showed fluid around her ovaries, but that she was unable to find a solution when she returned to her own doctor. “I was completely at a loss because I didn’t know what to do, I was still in a lot of pain,” she said.
She then decided to seek private help and paid £250 for an appointment with a consultant. She said it was the first time she felt listened to. The consultant referred her for an urgent NHS MRI scan, for which she waited three or four months.
The scan results, received in January, confirmed endometriosis. That diagnosis came almost 10 years after the possibility of the condition had first been mentioned to her.
Grace is now waiting for the next steps in NHS treatment. She said private surgery is currently too expensive, while the treatment process has been difficult to navigate.
“The process is so complicated and I feel like it shouldn’t be.”
‘A safe space’ for people in the Craigavon area
After receiving messages from many women who said they had experienced something similar, Grace decided to establish the support group. Her aim is to create a place where people living with the condition can talk openly about what they are going through.
She said some medical staff had been dismissive when she raised endometriosis during different stages of her search for answers. She also described the continuing impact of the condition, saying that only the previous week she had been lying on the floor vomiting because of pain.
“I want it to be a safe space where people can open up,” she said.
Grace said greater awareness had not yet led to enough change for patients. “The biggest thing that could change is being listened to. Dismissal is a big problem,” she said.
Her account comes as the Southern Trust said it takes concerns about patient care seriously. The Trust said it is committed to providing high-quality treatment and care, and encouraged anyone with questions or concerns about their care to contact its Service User Feedback Team so the matter could be considered and addressed appropriately.
