To mark the end of Endometriosis Awareness Month, experienced Health Research Associate Dr Kirsten Peters shares important information that everyone should be conscious of.

When Bindi Irwin revealed she had undergone surgery for endometriosis the world was given an insight into a problem that is not often spoken about or fully understood but deserves to be in the spotlight.

“I battled for a long time wondering if I should share this journey with you in such a public space. It came down to the responsibility I feel to share my story for other women who need help,” Bindi shared to her 5.2 million Instagram followers.

The World Health Organisation describes endometriosis as a chronic disease where tissue similar to the lining of the uterus grows outside the uterus. Women are susceptible to this disease from the time of their first menstrual period, and it can last all the way through until menopause.

After struggling with the condition for 10 years Bindi revealed she had suffered with insurmountable fatigue, pain & nausea. “Trying to remain a positive person & hide the pain has been a very long road. These last 10yrs have included many tests, doctors visits, scans, etc,” Bindi, the daughter of the late Steve Irwin, says.

The cause of endometriosis is unknown, but it can be treated

Bindi’s news came as the world marked Endometriosis Awareness Month this March, dedicated to raising awareness of this disease that affects 1 in 9 Australian women, and many others who are transgender or gender diverse, or remain undiagnosed or misdiagnosed.

With the cause(s) of endometriosis not definitively known, it is currently classed as an unpreventable disease. There is also no cure, but its symptoms can be treated with medicines or, in some cases, surgery.

Another complication is that while there are potentially a host of symptoms present in sufferers of endometriosis, some with the disease may have no symptoms at all.

In Australia biostatisticians like Kirsten Peters are aware of the challenges surrounding diagnosis and warn that for many the symptoms are dismissed as “just cramps”, taking on average 7.5 years to diagnose.

“In addition to severe pain, it can decrease quality of life due to infertility, fatigue, depression and anxiety issues. Early detection is extremely important for women because the effects of late treatment can be devastating as the damage already done may not be reversible”, Peters says.

The experienced research associate works for Proteomics International Laboratories (ASX:PIQ) who have made significant progress in developing a simple blood test that can offer quick and accurate diagnosis of endometriosis in up to 90% of cases.   

Peters acknowledges that currently there is no known way to prevent endometriosis: “Some studies suggest that you could reduce risk by keeping lower estrogen levels in your body, such as hormonal birth control pills. Therefore, enhanced awareness and early diagnosis is the key to earlier care and treatment to reduce the severity of disease.”

Even Bindi reveals her battle with trying to get to the bottom of her health challenges; “A doctor told me it was simply something you deal with as a woman & I gave up entirely, trying to function through the pain. I didn’t find answers until a friend helped set me on a path of regaining my life. I decided to undergo surgery for endometriosis.”

“It is likely that someone close to you is impacted by endometriosis. Too many women are dismissed, misdiagnosed and undiagnosed with their wellbeing negatively impacted,” Peters says.

Be alert to the early warning signs of endometriosis

Symptoms can include severe pain during periods, sexual intercourse, bowel movements and/or urination, chronic pelvic pain, abdominal bloating, nausea, fatigue, and sometimes depression and anxiety. It can also potentially make it harder for women to get pregnant.

It is an old adage, but earlier identification of endometriosis, which currently takes 7.5 years on average to diagnose, means earlier treatment. This in turn results in a better chance of alleviating the symptoms that come along with the disease.

Until very recently delivered advances in testing methodologies, the suite of tests available to confirm that patients presenting with symptoms do actually have endometriosis had clear shortcomings. This meant that the hand-in-hand treatment options of (1) awareness to symptoms and (2) early diagnosis and management were sub-optimal.

Persist until you get on the road to recovery

“Educating the public and medical professionals about this silent disease, the prevalence of it and the burden it poses to society, will empower women to feel supported to seek treatment and gain a diagnosis earlier”, Peters says.   

At Proteomics International Laboratories Peters is working on the solution and the Aussie biotec recently revealed very promising results for its potential new world-first blood test for diagnosing endometriosis.

The improved early screening for the disease offered by the Proteomics test is a massive step forward in the treatment of endometriosis. It not only delivers early identification. It also means that current invasive surgical testing procedures, that may misdiagnose some patients, can now be avoided.

Bindi has acknowledged it was hard to get some medical professionals to ‘believe in her pain’ but persistence enabled her to get on the road to recovery. 

“I’m aware of millions of women struggling with a similar story. There’s stigma around this awful disease. I’m sharing my story for anyone who reads this & is quietly dealing with pain & no answers.”, Bindi says.

“Let this be your validation that your pain is real & you deserve help. Keep searching for answers.”