Matt Burnell (Spence, Australian Labor Party) Share this | Hansard source

I rise today in this place to speak in support of the motion of my good friend and colleague the member for Bendigo. I would also like to acknowledge all speakers on this matter today and their substantial contributions to this discussion. Today I speak in relation to my experience in watching my wife deal with the realisation that she had been living with this invisible disease for some time, completely unaware of what was happening to her body. As many in this place would understand, there is our public life and there is our private life. Those who know me well know I hold my private life close. From the outset I would like to acknowledge the trust my wife has placed in me to tell our story today.

Three and a half years ago my wife, Cassandra, and I said 'I do', getting married surrounded by our family and closest friends. Like many couples, we had a dream of having our own little family, and, given we were both in our early 40s, we knew we had no time to waste in doing so. After months of failed conception we started IVF treatment to assist in the process and hopefully realise our dream. For those that have experienced this, there is not much that isn't discussed, probed or tested to give you the best chance at becoming parents. This would be the time that we would first learn Cassandra had endometriosis. Unfortunately, without cover for private health insurance and with long public hospital wait times for surgery, we reluctantly pushed ahead hoping for the best in what would ultimately result in two unsuccessful rounds of IVF.

When Cassandra finally was able to have surgery, we would learn that the endometriosis was quite severe and had caused organs to stick together. This was not a case of irritable bowel syndrome due to stress; the tearing sensation in her lower abdomen when she coughed was not in her head; it was a very real yet invisible disease. It was a chronic disease, endometriosis. Following surgery, there was a period of mental and physical relief from the symptoms she had been experiencing. Fast forward 12 months, with one last viable embryo, we undertook another round of IVF, albeit unsuccessful yet again.

To our surprise, shortly following my election to this place, we would learn that we had naturally conceived, but our excitement would be short lived. We experienced a miscarriage at approximately nine weeks. This was not long after I gave my first speech. The time following this was of great difficulty. Was the nausea, the bloating and the feeling of sickness all in her head following the miscarriage, or was it something more sinister? We would soon discover endometriosis had been invisibly taking over yet again. While waiting to see the specialist, I watched my wife try to push through the pain, try to push through the nausea and try to push through the fatigue. This often ultimately meant taking time off work because no amount of trying to push through it would make it go away.

Exhausted from dealing with the pain, and after further tests, the specialist would recommend urgent surgery. This surgery occurred only a week and a half ago—as if determined by fate itself—during Endometriosis Awareness Month. This time we had the talented robotic surgeon, Dr Sellva Paramasivam, and others on standby if anything were to go wrong. It resulted in the removal of the right ovary, which was completely covered in endometriosis and had a five-centimetre endometrioma, or chocolate cyst. The left ovary remains attached to the bowel due to the extremely high risk of extensive damage occurring if detachment had been attempted.

My wife and I understand that we are extremely fortunate to be in the position to have private health insurance and to be able to cover the further out-of-pocket expenses to have this surgery at the Flinders Private Hospital. Unfortunately, many simply cannot afford the same level of treatment we have received. My wife's journey with endometriosis is far from over, but we are hopeful.

Our government has committed $49.65 million for clinical management and care, $28.97 million for research and $8.57 million for awareness and education. One in nine women, girls and those assigned female at birth are estimated to be affected by endometriosis. My wife's story is but one of the approximately 800,000 cases of those affected by the disease. Whilst our government's commitments are fantastic, there is still much more to be done.

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