Study seeks Queensland people with endometriosis

Young Queenslanders who suffer endometriosis have been called on to take part in a five-year study into the condition that effects one in 10 females of reproductive age.

Young Queenslanders who suffer from period and pelvic pain and that have endometriosis are being sought for a national “first of its kind” study that will focus on finding pain relief for the condition.

Endometriosis, or “endo”, affects about one in 10 females of reproductive age in Australia. The condition occurs when cells similar to those that line the uterus grow in other areas, such as the bladder, bowel or ovaries.

Symptoms include discomfort during sex, period and pelvic pain, and heavy periods.

The condition can be difficult to diagnose.

Study co-ordinator Professor Sonia Grover from the Murdoch Children’s Research Institute said most young people who have periods will experience “some” pain.

But severe pain associated with endo could prevent young people from going about their daily lives.

“For others, the pain and associated symptoms they experience will stop them from doing everyday activities and will affect their quality of life and mental health. No young person should have to go through life experiencing severe period pain,” Professor Grover said.

Ruby Simpfendorfer describes her experience as one of debilitating pain over a four-year period.

“One day I woke up in the worst pain that I think I have ever felt,” Ms Simpfendorfer said.

After having “little control” of her life due to the symptoms, she began to experience depression.

“I found it harder and harder to see those small happy things. It became a struggle to put on my uniform each day and to brush my teeth. I was always tired and sad over nothing,” she said.

After seeking treatment, Ms Simpfendorfer is now free from pain and able to enjoy daily activities again.

The LongSTEPP Project will measure and track periods, pain, quality of life and mental health in young people impacted by period or pelvic pain and have endo.

The study hopes to follow 3000 people between the ages 10 to 18 years and will extend over a five-year period.

The aim of the study is to find out how to best care for young people experiencing period or pelvic pain and endometriosis.

Young people that report period or pelvic pain are often “ignored” or have their symptoms “normalised”, with many experiencing pain for years before it is treated.

“There is limited education to ensure young people seek help for their period problems,” Professor Glover said.

The study was launched on International Women’s Day and timed to coincide with endometriosis awareness month.

Queenslanders that have a referral from a gynaecologist are encouraged to participate in the national study.

People can enrol at one of the two major research hubs in either Brisbane or Cairns, or via social media.

“We believe that period and pelvic pain can be managed to prevent chronic pain and endometriosis,” Professor Grover said.

Originally published as Study seeks Queensland people with endometriosis