Endometriosis

The Hon. T.A. FRANKS (15:38): I rise today to talk about the struggle that many women, and people assigned female at birth, go through to have their pain taken seriously, and why we as a state need to urgently address this. I particularly want to highlight this as we go towards March, which is endometriosis awareness month. Endo is as common as asthma or diabetes. It affects one in every nine people born with a uterus.

What is predominantly women's pain has been largely ignored, and continues to be discounted, and where it has been recognised it often has not been prioritised, with comparatively little research, funding, specialists or treatment options. Often, even after diagnosis, many women have to continually fight with healthcare providers to have their condition understood, sometimes even having to explain to their doctors what endometriosis is.

Currently, the wait on average for a diagnosis of endometriosis is a little between eight to nine years—not months, but years. It can only be confirmed through laparoscopic surgery and often girls are told they are 'just unlucky' or they have 'bad period pain' and are made to feel that they are exaggerating the severity of the pain they are feeling.

Endometriosis is a condition where tissue that is the same as the lining of the uterus grows outside the uterus. It can grow in the pelvis, ovaries, fallopian tubes, bladder or bowel, or elsewhere in the body. There have even been cases where endometriosis has been found in the brain. It is a whole-body disease. Endometriosis means that when a woman has her period, that tissue acts as it normally would, bleeding with each cycle into the body which causes inflammation and pain.

Endometriosis can appear as a small bleb, a lump surrounded by scarring or as an adhesion, holding two organs together. For some women, it takes so long to get a diagnosis and to have their pain taken seriously that they have organs fused together or are so scarred that parts of those organs need to be surgically removed. Many women who are eventually diagnosed with endometriosis have to jump over so many hurdles and are told as they raise concerns about their health that it is all in their head and that they have a mental health condition, not this physical one.

When they finally are correctly diagnosed and have surgery to treat their endometriosis, that surgery to remove endometriosis is not a catchall solution. It is estimated that about 21.5 per cent of patients will have the disease recur at about two years post surgery and somewhere between 40 and 50 per cent will have it come back in five years. Despite a successful surgery, at least 20 per cent of women will return after surgery with the same levels of pain.

What this means for those women is that they cannot go to work, cannot go to school and, because of the pain that this causes, their lives are limited. In fact, studies have shown the lost productivity in women with endometriosis is equivalent to 11 working hours per woman per week. The impact of endometriosis on families, workplaces and relationships is substantial and is, of course, coupled with those economic implications.

At present, there is no cure. There are no substantive physical prevention methods for either endometriosis or persistent pain and, although early intervention can lessen its impact, the exact cause of endometriosis is still not known. Research and treatment options continue to be limited, underfunded and not prioritised. We cannot continue to stand by while so many people in our community are in long-term pain from a condition that has no definitive cause, that is grossly misunderstood and for which there is no current cure.

The Greens therefore call for our state to establish a centre of expertise in specialised endometriosis and chronic pelvic pain diagnosis, treatment and management in our state. It is something that we can look to Victoria as leading the way. With so many affected by this pelvic pain and endometriosis, we need to have more options.

When the tired old myths are pushed out about its cures, we need trained health practitioners in South Australia so that patients can easily access that interdisciplinary and holistic care. We need the education that a specialist centre will provide. We need friends of endo, endo friendos, to raise awareness, provide earlier information and hopefully earlier diagnosis and to ensure that so many suffering in silence right now do not suffer needlessly and that we do all that we can to help them.