Last updated March 6, 2018 at 9:15 am
Australian government funding to research debilitating condition that affects 10% of women.
The $2.5 million funding announcement has been welcomed as a long overdue commitment by national experts, organisations, and sufferers.
Long-time suffering for endometriosis
Endometriosis affects one in 10 women. It is a debilitating condition where uterine tissue grows outside of the uterus in the fallopian tubes, the ovaries, or the tissue lining the pelvis or, although less common, elsewhere in the body.
Due to variability of symptoms, it often takes years before an accurate diagnosis. One of the most common symptoms is extreme pelvic pain during periods. It can also damage fertility.
The disease often starts in teenagers, such as Imogen Dunlevie, who was diagnosed when she was 15 in 2010.
Treatment is often a long, invasive, and expensive journey. In about eight years, Imogen has had multiple laparoscopy procedures as well as an intra uterine device (IUD) when her condition was first detected. In December 2017, she had a spinal cord stimulator implanted to treat the chronic pain.
“Many young women with endometriosis face ongoing and very significant health consequences because of their disease. They often find it hard to talk to friends and family about it because it remains such a taboo condition,” says Luk Rombauts of Monash University, and President-Elect of the World Endometriosis Society.
“Even health practitioners often are poorly informed about what these women need and how they can best be treated.”
Overdue support becomes national priority
The funding will support research priorities identified under the national action plan, Health Minister Greg Hunt and MPs Nola Marino and Nicolle Flint said in an media release announcing the plan.
Luk welcomed the news.
“The National Action Plan for Endometriosis (NAPE) is a wonderful initiative. Its three main objectives will be to raise awareness, to improve the delivery of integrated high value care and to promote research into the causes and possible treatment of endometriosis.
“There are many international guidelines for the diagnosis and treatment that have been published but with the NAPE we will be in a much better [position] to disseminate this information.”
Karen Luxford, who chairs the board Endometriosis Australia, also welcomed the injection of funds, which hoped would lead to research into providing earlier diagnosis.
Future treatments and cures for endometriosis
Luk says the use of ultrasound to diagnose the condition is the biggest breakthrough so far.
“That has really changed the way many of us practice. Every woman with suspected endometriosis should have an internal scan by a sonologist with a special interest in endometriosis first before she has surgery.
“This certainly has allowed women with the disease to make much better informed decisions about their care.”
Imogen hopes for a cure but it “feels so out of reach”. Like many with chronic pain, their hopes are more tenable.
“Better detection and better knowledge would be a great place to start. I think also because endo causes so many problems there needs to be better all-round care for people suffering, so they don’t end up with sixdifferent doctors all treating one symptom each,” she says.
March is Endometriosis Awareness Month.