A new study has found that Australian women with endometriosis live with the painful condition for an average of 6.4 years before being diagnosed.

Donna Ciccia, Director and Cofounder of Endometriosis Australia, told HealthTimes that “endometriosis is a quality of life disease, which often gets reduced to being an issue of fertility – but it’s not just about that.”

“We’re talking about women being unable to do basic things like go to the toilet or have sex without being in pain.”

“Socially, women are impacted significantly. They lose their social circles because they’re seen as a ‘flake’ who doesn’t show up. Their ability to work is affected because they aren’t seen as reliable, or when they try and cram it in, they then need time off regularly.”

The cross-sectional survey of 620 women, published in the Journal of Psychosomatic Obstetrics and Gynecology, found despite medical and surgical intervention, 65.8% of the women suffered period pain and 82.7% experienced chronic pelvic pain in the three months prior to responding to the survey. Respondents had consulted an average of three different health practitioner specialties in the previous 12 months.

Dr Beck O’Hara, lead author of the study and Endometriosis Grant Funded Researcher from the Robinson Research Institute at University of Adelaide, told HealthTimes that interviews and focus groups indicated there were multiple contributors to the delay. This includes the “normalisation of period pain amongst the individual, friends, family and health care providers.”

“People with endometriosis reported that it is difficult to tell what is 'normal' period pain and what symptoms might require further investigation – particularly if they had pain and symptoms from their first period”, Dr O’Hara explained.

“Other factors which may contribute is period and period pains being considered taboo, misdiagnosis (endometriosis can present with a lot of different symptoms), non-discriminatory investigations when they seek health care, or a lack of knowledge of the disease among health practitioners”, she said.

Ms Ciccia compared the results from the study to previously published research.

“We know that research from 2013 onwards found that the delay to diagnosis was 7 to 12 years. So, while waiting 6.4 years for a diagnosis is still terrible, it has decreased so we know we are moving in the right direction - even if we do have a long way to go.”

Ms Ciccia said that central to further reducing the time to diagnosis was finding a non-invasive test that can detect endometriosis, even in its early stages. 

“We do have some really good studies going on in the area of deep infiltrating endometriosis ultrasound. This allows us to do some screening, and helps surgeons map, but it only really picks up stage 3 and 4.”

“A new method is coming out, developed in Sydney, that can pick up the disease earlier at stage 1 and 2 by detecting small deposits of endometriosis”, Ms Ciccia said.

“Ultimately though, we want a blood test or a urine test or some other non-invasive technique. Every year we get a new report saying that we've found it, but we haven't. We're still quite a way off having that.”

Ms Ciccia said it was important to recognise the profound financial impact of endometriosis, on both a woman personally, as well as the healthcare system.

“We know endometriosis costs the economy $9.7 billion annually. You can ask anyone with endometriosis, and their family, and they’ll say the economic burden is huge.”

“It’s not just about the surgery or the medication. It’s the cost of trying acupuncture, physiotherapy – all the modalities they try, just to function.”

Dr O’Hara emphasised the importance of normalising conversations around menstruation.

“One simple thing that we can all do is talk about menstruation, particularly with our young people so we can reduce the stigma and taboo associated with menstruation.”

“That is why the school program being conducted by the Pelvic Pain Foundation of Australia is so important.”

“For health practitioners - ask about a person's menstrual cycle at health appointments to identify any areas of concern. Upskill in endometriosis, for example completing the RANZCOG e-learning module on endometriosis or the Australian College of Nursing endometriosis and pelvic pain course.”

In a statement to HealthTimes, a representative from the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) said that the college has been tasked by the Department of Health to develop an Australian Clinical Practice Guideline for the Diagnosis and Management Of Endometriosis, in line with the National Action Plan for Endometriosis.

“Developed in parallel, the Raising Awareness Tool for Endometriosis (RATE) was developed by a team of experts including gynaecologists, general practitioners, pain medicine specialists, fertility specialists, emergency physicians, and nurses, working with RANZCOG.”

“Launched this year, It is a quick-to-use electronic resource for health professionals and their patients to help identify and assess endometriosis – and endometriosis-associated symptoms – to reach a faster diagnosis and achieve more effective management of symptoms”, they said.