Lipoedema affects nearly four hundred million women worldwide and requires life-changing surgery to halt its’ progression. Healthcare in many countries cover the costs but the estimated 1.5 million women in Australia with the condition are forced to pay thousands of dollars out of pocket.
Sarina Goches spent $45,000 on surgery and needs at least three more, she urges politicians to advocate for women with her condition and says lipoedema impacts more than just women’s bodies.
“No woman should have to choose between housing, education or draining their super because of a disease that could be prevented or helped before it gets to the stage of surgery. Not only does it impact our entire bodies, but it also takes a huge toll on our mental health.”
Sarina Goches
Jennifer Free spent fifty years dieting and exercising but was unable to shift weight from her legs and only began to find answers after a massage onboard a cruise ship: “The masseuse started telling me something was wrong with my legs, I told her they’re just like that because I’m fat. But she said: ‘No, fat is soft. This is hard. You need to see a doctor.’.”
Once home Mrs Free began the journey to find out what was happening to her body, but it wasn’t easy and she said being dismissed by doctors was something she had experienced her entire life.
“A massage therapist at my doctor’s clinic knew about lipoedema and kept advocating for me until we found a doctor who could diagnose me. It was a struggle because doctors take one look at me and tell me I’m overweight, but they never look at the underlying reason as to why. I’m a size 10 at the top and a 16 at the bottom, take one look at my legs and you can tell it’s not normal.”
Mara Fillery, a physiotherapist who specialises in lipoedema said the condition was believed to be caused by a genetic mutation of fat cells and can lay dormant until significant hormonal changes occur.
“Women usually notice it beginning when they hit puberty, after giving birth or during menopause. It can also be triggered by stress, surgery, disease or any sort of trauma. It leads to unequal fat growth which is resistant to weight loss and exercise,” she said
In Australia the condition isn’t well known, and as a result many women only find out about it through social media.
“The problem is lipoedema isn’t being taught. GPs have said to me that it’s ‘a made-up internet disease’ and have thrown out my brochures. I’m thankful the younger generation are finding out about it through Tik-tok and Instagram,” she said.
Dr Karen Herbst, an internationally recognised lipoedema specialist, agrees a lack of education into the condition is an issue
“Science has not focused on fat in women, so we do not have a lot of teaching in this area,” Dr Herbst said.
Ms Fillery said: “Even if you can afford surgery, you still need to manage the symptoms with compression garments. They can cost anywhere from between a few hundred to over $1,200 but the more expensive ones are much more effective.”
Janelle Flannery was only able to put a name to her symptoms after watching a television program in her early fifties
“I’d never heard the phrase lipoedema before. I went to change the station but when I looked up, I saw a woman in bike shorts and a crop top. I looked at her body and went, ‘Oh my god, that’s me’.” she said.
Ms Flannery said receiving a diagnosis meant the world to her.
“The biggest thing I needed to hear was, ‘you have done nothing wrong; this is your body working against you’, and that was magical because we blame ourselves and beat ourselves up for so many year.”
Ms Goches is currently working on submitting information to local politicians and encourages people to help by signing a petition calling for lipoedema treatment to be added to Medicare
For more information visit the Lipoedema Australia website
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