Patient stories

Most teenagers never leave the house without their phones. For Ruby, she couldn't go anywhere without her painkillers.

Ruby's life largely became a blur as she was heavily medicated to dull her chronic period pain, which could last for up to three weeks every month.

"My period wasn't a normal one, from day one it was a killer period," she said. One day I woke up in the worst pain that I think I have ever felt. I didn't know what to do with myself or how to get even the smallest bit of respite. I fell in a heap on the floor and slept for two hours. This wasn't a one-off really bad day. This was the amount of pain that I was in for the larger part of four years.

"Pain that hurt to lay still in my bed and left me lying on the floor of whatever room I happened to find myself. I couldn't participate in sport or go to parties because I couldn't bear the thought of standing that long.  I missed a lot of school, couldn't sit exams or complete homework." 

Ruby, 16, said the constant pain also took a toll on her mental health.

"I had so little control over my life and I soon started to deal with depression," she said. 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."

But after reaching out to Professor Grover and going on a three-year journey of trying to treat the pain, Ruby was eventually prescribed medications that worked for her, which meant her life of debilitating agony was over.

"The treatment has been life-changing. I'm not in pain anymore and I can commit to going to parties, rowing sessions and attending class," she said.

Ruby (pictured right, with Mum, and Emma) said she was lucky to have supportive family and friends who were open to talking about period problems.

"It's important to continue to break the taboo and stigma around female health and mental health," she said. We should all make an effort to have more honest and open conversations about periods."

Ruby is part of a project that is seeking more than 3000 young Australians to help improve the diagnosis and management of endometriosis and period and pelvic pain.

Researchers at the Murdoch Children's Research Institute (MCRI) will lead the project, which will explore early risk factors and psychosocial factors impacting on hospital visits, to better understand the educational and management strategies required to help ensure that young people's lives are not ruined by period and pelvic pain.

The LongSTEPPP Project, recruiting via social media and 20 hospitals nationally, is seeking those aged between 10-18 years, who experience period or pelvic pain and endometriosis and have been referred to a gynaecologist.  

"It's so exciting to see this research being done because these conditions have been overlooked for too long," Ruby said. A period should be an inconvenience at worse."

"Without a focus on this research area, I possibly wouldn't have found the right treatment and would still be missing 50 per cent of school every year."

Professor Grover, who will oversee the project, said it was the first of its kind due to its focus on young people, leading to the possibility of prevention of endometriosis-related problems through controlling menstrual problems and pelvic pain.

"There is limited education to ensure young people seek help for their period problems," she said. Young people report that their symptoms are ignored or normalised, and many will experience years of pain before it's acknowledged and their pain treated. Evidence suggests that recurrent severe period pain predisposes people to chronic pelvic pain.

"Despite this, the impact of education and psychosocial factors on the development of persistence of pain in young people to adulthood has not been studied."

Endometriosis is a condition where tissue that normally lines the uterus is found outside the uterus. It affects about one in every 10 Australians who menstruate and is associated with infertility and chronic pelvic pain. There are no symptoms that are specific to endometriosis and at least half of those who have a laparoscopy for pain will have no signs of the condition found.

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

"We want to measure and track periods, pain, quality of life and mental health in young people affected by period or pelvic pain and endometriosis. We want to know what works to help their pain by tracking their health care over time with this project running for five years."

Participants and parent carers will be asked to complete questionnaires yearly for up to five years.

For more information on LongSTEPPP and to register your interest in our study.

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