March is Endometriosis Awareness Month, which aims to spread awareness of the disease, which in Australia affects one in nine women and people with menstrual cycles between the ages of 15 to 49.
Director and co-founder of Endometriosis Australia, Donna Ciccia says that research and awareness has come a long way since her diagnosis in 2001, though “we still don’t know what prevents it, what causes it or how to cure it – we still have a lot of gaps,” she said.
What we do know is that there are several treatment methods available. Ms Ciccia refers to the disease as one that requires a multi-disciplinary team. “Surgery with an Endometriosis specialist is one aspect, medical management via hormones is another and pelvic health physiotherapy should be in everyone’s toolbox, before and after surgery,” she said.
“Treatments that may be very effective for some may be a detriment to others, so it is important to keep trying to find the practitioner who becomes part of your team, that you click with,” she said.
Commending the efforts of other specialists such as naturopaths, acupuncturists and nutritionists. “Pain management is an evolving space, we’re learning more about pain, but it has only just started coming to the forefront of research,” she said.
For a lot of women diagnosed, it comes as a relief after years of not knowing what the problem is, where the pain is coming from or what to do about it.
Despite it being a common disease, symptoms vary and a full diagnosis can only be made through laparoscopic surgery, thus it can often take seven to twelve years to be diagnosed.
Endometriosis can be debilitating to the point where one’s quality of life is drastically impacted. “What is ‘normal’ period pain is not normal when you have to miss out on events – school, uni, seeing friends, sport. It’s something that needs to be investigated,” she said.
As well as the physical and mental anguish that often comes with Endometriosis, it is also extremely expensive. It costs the Australian economy $9.6 billion annually due to lost productivity, direct and indirect healthcare costs. Individually, Endometriosis warriors spend an average of $30,000 a year to combat the disease.
It is not a lack of research which let the gaps in our knowledge of Endometriosis persist. Compared to other diseases which affect a similar amount of people, such as diabetes and asthma which receive multi-million dollar investments annually, Endometriosis receives one million. “If this affected the general population, we would see a much greater investment”, Ms Ciccia said.
“Our general healthcare for women needs to be better. We challenge gender bias and inequalities in healthcare because we need to have people at the table who want to have that discussion. Endometriosis needs to have a seat at the table.”Donna Ciccia
Lesley Freedman co-founded EndoActive with her daughter Syl, upon Syl’s diagnosis at 21. Before that, Lesley had never heard of Endometriosis and had assumed it was similar pain she had experienced when she was young.
There is a stigma surrounding pain which still looms socially and medically, especially when it comes to invisible chronic illnesses.
“A lot of women have suffered – with a family that don’t actually believe them and doctors that make careless remarks, making them think they’re not believed,” Ms Freedman said.
To learn more about Endometriosis, participate in events taking place this month, donate to the cause and access more resources visit https://www.endometriosisaustralia.org/.