Shining a light on endo

Endometriosis can be a terribly debilitating disease.

By Danielle Galvin

In recent years, endometriosis has been making headlines.

But experts say there’s still a long way to go to getting women diagnosed quicker, and getting the funding, research and attention it deserves as a debilitating condition.

Endometriosis a relatively common disease in which the tissue similar to that of the lining of the womb grows outside it.

While it affects around 11 per cent of Australian women, often starting in the teenage years, there’s still a long way to go to break down the stigma.

The pain, often dismissed as ‘bad period pain’ can be incredibly debilitating for sufferers.

CEO, co-founder and director of Endometriosis Australia, Donna Ciccia, said the organisation was founded in 2013 in the hopes of raising awareness about endometriosis and to normalise the conversation.

“It’s because of ambassadors such as Emma Watson the Yellow Wiggle and Olympian Emily Seebohm and many more, that we have been able to gain attention and increase awareness about endometriosis with patients and the general public,” she said.

“Even though awareness has increased I don’t think the understanding of the gravity of living with endometriosis has reached everyone.”

Shockingly, there are often long delays in getting diagnosed, sometimes between 7-10 years.

According to the organisation, symptoms vary hugely from pelvic pain, fatigue, pain around ovulation or during your period, pain with bowel movements, pain during or after sex, heavy or irregular bleeding, pain when you urinate and having trouble holding on when your bladder is full.

Ms Ciccia said sometimes women aren’t believed or are dismissed when they seek medical help.

“There are many factors contributing in the delay in diagnosis, normalisation of symptoms by patients just thinking periods are meant to be painful,” Ms Ciccia said.

“Endometriosis is a multifactorial disease and it can affect many areas of your life from basic bodily functions like urination and defecation and intercourse to mental health and wellbeing.

“Endometriosis impacts on every facet of your life and for a very long time.”

Unfortunately there’s still some misunderstandings about endometriosis, particularly for teenagers and younger women getting the help they need.

“It is still common for stigma to be attached to periods and period pain, our latest free webinar on adolescents explains that is not uncommon to have period pain as a teenager but it should ease as you age,” she said.

“It is not common to have severe incapacitating pain and we do know teenagers are not too young to have endometriosis.”

If you or someone you know is experiencing symptoms, it’s time to seek help.

“If pain or painful periods puts your life on hold please seek help,” Ms Ciccia said.

“There is a wonderful new tool on our website by RANZCOG called RATE and this screening tool may help explain to your GP what is happening for you and help plan a treatment plan going forward.”

In March, Tasmanian MP Michelle O’Byrne told parliament the normalisation of period pain means women often won’t seek help for 2-3 years.

She said a lack of education in GPs could also add on a couple of years to a woman getting diagnosed.

“The annual cost of endometriosis in Australia is $7.4 billion.”