Endometriosis

Legislative Council
Wednesday 1st November 2017

Endometriosis

The Hon. T.A. FRANKS (16:48): I move:

That this council—

1. Notes endometriosis is an illness where tissue similar to the lining of the uterus occurs outside this layer and causes pain and/or infertility and that there is currently no known cure;

2. Acknowledges endometriosis as a serious health concern, often resulting in fertility issues, multiple surgeries, education and employment absences and a diminished quality of life for the girls and women affected;

3. Recognises the strain on the economy and health sector due to lack of research and expertise in the area of endometriosis and related conditions;

4. Supports the need for early intervention to protect teenagers and young women from infertility and chronic pain in later life;

5. Supports the need for better training and awareness in endometriosis for health professionals in the interests of early diagnosis and prevention of further health issues;

6. Recognises that women are at risk of suffering severe physical and mental health issues if endometriosis continues to be under-researched and under-funded;

7. Affirms that women's health issues like endometriosis should be more of a priority for funding and research; and

8. Calls on the South Australian Government to provide funding to extend the trial of the ME program in South Australian schools; an early intervention and education program developed by Endometriosis New Zealand teaching young women that not all pain is normal pain and facilitating early diagnosis of endometriosis.

Endometriosis is a chronic illness and it can affect anyone who has a period. Before those, particularly males, tune out because it sounds a little icky, let me tell you how this affects men. Endometriosis can cause infertility in your daughters, sisters, partners, colleagues and friends. It causes chronic pain and illness in those daughters, sisters, partners, colleagues and friends. It can affect the sufferer's career, schooling or training and endometriosis can make sexual intercourse extremely painful for women.

Endometriosis is a condition where tissue that is the same as the lining of the uterus grows outside the uterus. It can grow around the pelvis, ovaries, fallopian tubes, bladder or bowel, and elsewhere in the body. This means that when a woman has her period that tissue acts as it normally would, bleeding with each cycle into the body, causing inflammation and pain.

What this means for those women is that some cannot go to work, some cannot go to school. In fact, studies have shown that 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 this, of course, is coupled with huge economic implications.

At present, there is no cure. There are no substantive physical prevention methods for either endometriosis or persistent pain, although early intervention can lessen its impact. The exact cause of endometriosis is not known, but what we do know is that it affects one in 10 women. It is about as common as asthma and diabetes. Both of these conditions we know a lot about. Indeed, last year, the National Health and Medical Research Council (NHMRC) allocated more than $14.7 million to asthma research and $64.1 million to diabetes research. Comparatively, it allocated $837,433 to endometriosis research.

'The High Price of Pain—November 2007' report estimated that applying evidence-based treatments could halve the cost of chronic pain to the Australian economy. That would be a saving of some $17 billion per annum. With an estimated 500,000 women and girls in Australia who have endometriosis, the cost for an adult women alone is around $6.6 billion.

To put it in other words, that saving would be $3.3 billion. These figures would be even higher if adolescent women with endometriosis were included, not to mention the indirect costs associated with disability and unemployment benefits, complementary medicines and therapies and the cost, of course, of downstream infertility.

But most importantly for these women, the price of missed opportunities in their lives is immeasurable. Most women with endometriosis will tell you their stories of frustration, of visiting numerous doctors who tell them that this is their lot as a woman and to 'man up' and move on. On average, it takes eight years to diagnose.

A woman on my staff first complained to her doctor about her endometriosis symptoms when she was 18 years old. Throughout her life she returned to many doctors to seek answers and treatment for the pain, the hormonal dysfunction and related issues. The answers to her were always the same. Doctors prescribed Panadol, they prescribed antidepressants, and they gave her regular cups of 'harden up, because this is just your lot as a woman'.

It was not until she had suffered an ectopic pregnancy, the first of five failed pregnancies, that a doctor agreed to look for endometriosis. She was then by this stage 37 years old.

That is 19 years for a diagnosis, 19 years of living with a chronic illness that had caused miscarriages and fertility issues because of a lack of education, research and understanding in the medical profession. She is one of many women affected by this illness—as I said, one in 10. If my staffer had been diagnosed earlier or had been told as a teenager that not all pain is normal pain, she may have had a chance at motherhood and she certainly would have had a better quality of life.

In New Zealand, the ME (Mental Health and Endometriosis) program has been running successfully in secondary schools for some 20 years. It is a fun-based, age-appropriate educational program designed to fit in with the school curriculum. It educates young women about endometriosis and what to be aware of. ME is a one-hour session where pelvic pain and associated conditions like endometriosis are discussed in a safe and educational setting.

Menstrual disorders can have quite a significant physical, emotional and psychological impact on young people and seriously compromise their schooling, quality of life and, of course, future fertility. In the past 20 years in New Zealand, they have seen in that country a significant increasing trend in an earlier presentation of symptoms, diagnosis, management and improved health-seeking behaviours in girls and young women.

Not all pain is normal pain, and sometimes pain can be a part of something far more sinister and can have a substantial impact on the life of a woman with endometriosis and on the lives of those close to her. While medical students are gradually being taught more about women's health issues like endometriosis, it is crucial that we intervene early to avoid serious issues in the future. We need early intervention to help women, so they are not waiting needlessly for years in pain for a diagnosis, so they are not needlessly missing school, work and their social events due to a chronic illness that is not properly diagnosed and, if they choose to be later in life, that they can be mothers.

In a recent study in Canberra of Australian teenagers, it was found that 26 per cent of girls missed school because of their period. Of these, 2 per cent of those girls reported time off school with every single period. Statistics and studies like these make it very clear that something must be done. Earlier this year, the Endometriosis New Zealand and Pelvic Pain Foundation ran a trial program in South Australian schools. Students in that trial learnt that one in 10 girls and women are affected by endometriosis and that it is not normal for a period to affect their lifestyle. They learned what is normal and what might be considered a problem.

These South Australian girls learnt how to relieve symptoms of pelvic pain and where to go and who to see if they are worried about pelvic pain. Most importantly, they learnt all of this in a nonthreatening, fun, safe session facilitated by trained instructors and were given the resources to help keep track of their cycle.

Early intervention and education have the potential to save young women from a lifetime of physical and mental pain. I certainly think that they are worth this investment and I hope the government does, too. I am calling upon all parties in this place to support the extension of a trial program here in schools next year and into the future to teach young South Australian women what to look for and how to cope with pelvic pain. We need an end to endo and we can start that end right here right now in this council.

Debate adjourned on motion of Hon. T.J. Stephens.

The Hon. I.K. HUNTER: Mr President, I draw your attention to the state of the house.

A quorum having been formed:

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