Technology now supporting sufferers to manage a disease that affects at least one in nine women of reproductive age.
The rollout of smart technology is helping women with endometriosis to better understand and manage their disease – and Australia is leading the way, with the development of an app and an online tool.
Endometriosis occurs when cells similar to those found in the lining of the uterus grow in other parts of the pelvis such as the bladder, bowel, or ovaries. Symptoms include cyclic pelvic pain, menstrual pain or cramping (dysmenorrhea) and pain during sexual intercourse (dyspareunia).
QENDO, a Brisbane-based organisation that provides support and education and raises awareness of endometriosis, launched their free app in June 2020. Since then it has been downloaded by 10,000 users and sparked interest from overseas.
Jean Hailes gynaecologist Dr Janine Manwaring, who has a special interest in endometriosis, described the QENDO app as “fantastic”. The app allows women to track their pain and their bleeding, and enables them to develop a personalised toolkit. “It’s a package and it’s very clever,” said Dr Manwaring. “It gives women power to manage their condition.”
In another initiative, a team of experts has developed a quick-to-use electronic resource for health professionals and their patients to help identify and assess endometriosis. The Raising Awareness Tool for Endometriosis (RATE) has been developed by a team that included gynaecologists, GPs, pain medicine specialists, fertility specialists, emergency physicians, and nurses working with the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG).
RATE allows users to complete a questionnaire and provides answers which can then form the basis of a discussion between them and their health care providers about what do and where to get effective help quickly.
The RANZCOG team hopes it will support a faster diagnosis and achieve more effective management of symptoms. “It’s a really good tool,” Dr Manwaring said. “The College is providing very accessible information.”
About 700,000 women and girls in Australia live with endometriosis. It is a disease that not only affects quality of life, but it costs the country billions of dollars a year in health care, absenteeism and lost productivity.
According to Jessica Taylor, director and president of QENDO , the app was developed in consultation with 3000 people including health professionals, consumers, researchers and carers.
“We used that information to create the platform,” said Ms Taylor. “Women record their personal experiences and if they need to enter the health system, they can provide their data easily.
“It is totally customisable and is totally inclusive with images and language that can support all women, including LGBGTI and Indigenous women.”
Ms Taylor said the QENDO app allowed women to better understand their health and to better manage their pain.
It gives power back to those people who need resources, and it reduces the workload on the health system.”Jessica Taylor, director and president of QENDO
To date, 250,000 data sets from app users have recorded symptoms, pain (its frequency and type), interactions with the health system including presentations at emergency departments, the number of blood tests, scarring, and miscarriages.
In addition to being available across Australia, the QENDO app is also available in New Zealand. It is hoped it will be launched in the US and UK. “We have requests from all over the world because there is nothing else quite like it,” said Ms Taylor.
When he announced the Federal Government’s $4.5-million ‘National Action Plan for Endometriosis’ three years ago, the Minister for Heath, Greg Hunt, said many women had “suffered in silence for too long, enduring diagnostic delays of between seven and 12 years on average.”
At present a laparoscopy – a minor procedure done under ananaesthetic – is the only way to diagnose endometriosis. However, Dr Manwaring said a number of research projects would be focusing on other non-invasive diagnostic tools, including a blood test.
“It appears to be complex, and as yet a reliable [method] for non-invasive testing has not been discovered,” she said.
Dr Manwaring said women need to be careful where they get their information on endometriosis. “An alarming number of people believe that what they hear in chatrooms is accurate,” she said.
“It’s important to make sure you get accessible, reputable [evidence-based] information like that provided on the Jean Hailes website, rather than opinion-based information.”Jean Hailes gynaecologist Dr Janine Manwaring