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House of Assembly - Fifty-Fifth Parliament, First Session (55-1)
2022-07-05 Daily Xml
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Endometriosis

Ms HUTCHESSON (Waite) (15:40): In early June, I attended the South Australian ASMR Medical Research Week gala dinner, which many here also did. I was fortunate to meet some incredible scientists and researchers. At the dinner, I was sitting next to Dr Wendy Ingham, who has worked out of the Robinson Research Institute. She was researching breast cancer, but during our conversation we started talking about another condition known as endometriosis.

Today, I am going to talk about that. It may make some in this house feel uncomfortable but, sorry, I am not sorry, because the uncomfortableness will go away when you leave the chamber; however, the discomfort of those women who suffer from this disease never goes away.

I would like you to think back to your childhood when you fell over and hurt your knee and you put on a big bandaid and a day later you tried to remove it. You either did it quickly or you did it little by little—a little bit of pain. If you suffer from endometriosis, the inner lining of your body has a bandaid on it and it can take five to six days to slowly be removed.

It is not only that, but you also have excruciating pain followed by some dull pain and then excruciating pain. It can hurt your chest cavity, it can hurt your back, you are exhausted and you are emotional. Sounds pretty great, right? No. Not only does it happen singularly but it happens every single month for women who suffer from endometriosis.

For men here, you get a hall pass because it is secret women's business, or at least that is how it has been for many years—rarely talked about in public space or acknowledged as a credible issue or rarely invested in to help researchers work to improve the outcomes for sufferers. Let's face it: it is probably like this because it is a women-only disease. It does involve the growth of tissue, similar to what lines the womb, growing outside the womb, and when the body goes to shed it has nowhere to go, so inflammation occurs.

Normally in this house we have 16 women and, if we add together another from Hansard or the Serjeant-at-Arms, then we have 18. One in nine women suffers from endometriosis, so we should have two here in this house. I can put my hand up because I suffer from it. I have suffered from it since 2003, since I had my child, but it means another woman in this house also has it, but she might not know it yet. She might not have been diagnosed, even though she has been struggling. She has probably normalised her symptoms.

On average, it takes 6½ years to be diagnosed. Some women see their GP seven times before they are referred to a specialist. Some doctors are not quick to assist; some do not even have the training. Patients may be sent for an ultrasound, but it comes back all clear. 'Why?' you may ask. Are they making it up? No, it is because we only have two companies in South Australia that actually have the MRI facilities and the expertise to detect it. The MRI in question is not covered by the PBS, so it is expensive, and some women cannot afford it and suffer the pain in silence.

Currently, there is no cure, only pain management, and the pain can be so bad that even the strongest of pain medication barely dulls its roar. Hot water bottles are a given, avoiding alcohol and inflammatory foods can help, but the pain rages on, like an uncontrolled bushfire burning inside. Not many employers are willing to provide special leave, so sufferers go on to work feeling awful. They double over in pain, grabbing a nap in their break and trying to accommodate the painkillers they are on just to even stand up.

There is hope, however. As I mentioned, I met Dr Wendy Ingham. Whilst she is not an endo researcher, she did put me in contact with her fellow researchers who are, and last week I met with them to discuss what they are doing to help women with endometriosis. Professor Louise Hull, Dr Jodie Avery and Dr Beck O'Hara are all part of the Robinson Research Institute, and their mission is to make diagnosis manageable and timely and accessible.

They have developed a digital platform called EndoZone, which has been co-created with people who suffer from endometriosis. It is a website women can access to get up-to-date information on their condition. They can sign up to be participants in studies, get information to provide to their doctors about their symptoms and also get the support they need. It also has a section for clinicians and researchers to work collaboratively to better diagnose endometriosis.

They also have other projects they are working on, but they need more help. One in nine women have endometriosis. They need money, they need to come up with less invasive treatment and they need our support. With 830,000 women having endometriosis in Australia, it is time that we stood up and helped them.

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