Originally Published by TVNZ/1News, Sunday August 4th.
Many endometriosis patients are now facing a nearly 10-year wait for a diagnosis, with growing delays for sufferers, according to a recently-released study.
The research, carried out by Canterbury University and Endometriosis NZ, shows the average delay time for a diagnosis has increased to 9.7 years, up from 8.7 years in 2022.
For those living with the debilitating condition, the extended wait is hugely discouraging.
Endometriosis is a uterine-like lining that appears outside of one’s uterus. This condition causes painful periods, and pelvis pain which is largely associated with their menstrual cycle.
In New Zealand, over 120,000 people suffer from the condition.
For Hannah Milson, it took over half her life to get the confirmation that her suffering was due to endometriosis. The 32-year-old was diagnosed three years ago, but her experience is ongoing.
“My experience was a rollercoaster,” she said. “An absolute rollercoaster.”
Milson consulted multiple doctors and specialists over the years and underwent many scans and tests – but all came back negative.
“Everyone was saying ‘there is nothing wrong with you’ … I even got sent to a psychiatrist to make sure that the pain wasn’t all in my head.”
The doctors kept telling Milson that there was nothing physically wrong with her.
“You’re lying in bed, 2am in the morning in absolute agony and to be told that it’s all in your head is not right.”
She lived for 14 years in severe pain before finally finding a gynaecologist who told her that she had severe endometriosis.
“I burst into tears ’cause finally, there was someone who took me seriously.”
Subsequent surgery confirmed the diagnosis, providing clarity about the decade of agony she had endured.
“There are so many girls out there that will be in the same situation … lying there, thinking that they are going mad, embarrassed, or just confused and lost, with just the pain.”
Milson said she wasn’t surprised about the study’s findings.
“Isn’t that terrible? To wait that long, to go through that process of seeing all the doctors and specialists,” she said. “It could be a lot better.”
The study, involving 1200 endometriosis sufferers, shows Milson’s experience is far from alone.
Endometriosis NZ researcher Katherine Ellis said people were keen to participate “because they want to change things for the people coming after them”.
“Not only was that average sitting on 10 [years], that was one of the most common delays but there was also quite a peak at 20 years,” she said.
“We even had participants who had delays of 40 years.”
Some experts find the numbers alarming.
Gynaecologist Dr Michael Wynn-Williams told 1News there “has been no change in the delay of diagnosis of endometriosis and we need to do more to improve it”.
The condition impacts multiple aspects of sufferers’ lives, and specialists worry these delays may erode patients’ trust in the health system.
“It has significant effects on patients with endometriosis – it affects their confidence, it affects their confidence within the health system,” Wynn-Williams said.
“A lot of patients struggle getting care early and getting the right care.”
He expressed concern about patients like Milson being told their pain is psychological.
“It’s a significant worry that patients are being told that their pain is in their head,” he said.
“Pain is never in their head and we need to improve that.”
Wynn-Williams said that international recommendations encourage more ultrasounds and MRIs – instead of surgery – for a quicker diagnosis. Meanwhile, many endometriosis sufferers are hoping for more recognition and research into the condition.
Milson said: “There will be a cure soon, hopefully – and hopefully wait times will go down and hopefully, people will take it more seriously and actually listen to us.”
Her message to other people struggling from the condition is to advocate for themselves.
“Keep pushing, Keep advocating for yourself,” she said.
“You’re definitely not alone.”