Meet Kelly, a 48-year-old patient from Sydney. Kelly says she first heard about Lipoedema in 2017, through ‘pure frustration’ after feeling ‘at her wits end’ with pain in her legs. After many late-night Google searches, she finally came across Lipoedema. “I even woke up my husband and said: That’s my legs!” Kelly says. “It was a real eye-opener to see other women with legs like mine, to know that it’s even a thing.”
Kelly says she experienced pain so regularly in her legs that she thought it was normal. She recalls when her baby daughter once crawled on her leg, and the pain made her flinch. Her husband remarked that shouldn’t hurt, and Kelly agreed – but didn’t understand why it did. “I never joined in at trampoline parks or at soccer because it hurt” Kelly says. “I would have loved to have joined in – but it hurt too much, then of course you experience judgement as everyone thinks you’re not jumping because you’re just too fat.” Kelly also described experiencing a sense of body dysmorphia because ‘it doesn’t add up.’ “What I put in compared to how the world sees me just doesn’t make sense.” Perpetually bullied throughout childhood and early adulthood for her size, it didn’t make sense to Kelly, her parents, or her husband, considering her good diet and exercise habits.
Kelly experienced varied symptoms of Lipoedema throughout life, including bruising easily and hypermobility. Most recently, during perimenopause, Kelly began to experience a decline in mobility, and was struggling to make it to the top of the stairs in her house, due to how heavy her legs felt.
After consulting with her own GP, Kelly was referred to Dr Helen Mackie, who confirmed her Lipoedema diagnosis. “I had mixed emotions about it” Kelly says. She described feeling relieved that the condition wasn’t her fault, however, she also says she felt very resentful, because in a way she felt that whatever she did – it didn’t matter because her legs would remain unchanged. This led to a ‘blowout’ on food and alcohol, before Kelly realized that didn’t make her feel good either. Kelly also described feeling overwhelmed after realizing that the only viable treatment option for her was likely surgery.
After reviewing her options, Kelly decided to undergo an Endoscopic sleeve gastroplasty (ESG) and lost approximately 20kg, however, “it didn’t solve the problem” she says. Kelly researched Lipoedema Extraction surgery further before deciding to pursue a surgical pathway with Dr Chris Lekich due to what she describes as a more ‘holistic, staged approach to surgery’ – which felt more manageable for her.
Kelly had her first consultation with Dr Lekich and Dr Teo in April 2022, who confirmed Kelly’s Lipoedema diagnosis as stage 4 and advised that Kelly undergo treatment for her varicose veins prior to surgery. She was able to have the vein treatments in Sydney by Dr Lekich, and from there she began to utilise custom compression garments.
Following a period of conservative management, Kelly then underwent her first Lipoedema-Extraction surgery with Dr Lekich. Utilising a protocol to manage underlying venous disease and a Lymph-Sparing technique, the Lipoedema-Extraction surgery resulted in 11.6 litres of diseased fat being removed from the anterior of her upper legs. Kelly described her recovery as being very difficult following her first surgery. Comparatively, her second surgery in June 2023, which resulted in 5 litres of diseased fat being removed from the posterior of her upper legs, Kelly described as feeling as though she could go to a dance party afterwards. In August 2023, Kelly underwent her third surgery, which resulted in 4.7 litres of diseased fat being removed from her lower legs.
“It’s hard to imagine what it must be like to not be in pain” Kelly says. “I just want to be mobile, active, and not end up in a wheelchair. I have two young children and I want to enjoy my life, as opposed to just existing.”
At four months post-third-surgery, Kelly reflected: “My body shape has changed, although I still have a lot of loose skin. I also still have some pain, but in the parts (of my body, that have undergone surgery) that have been done, I can feel a different texture and there’s less pain there. “I’ve been to the beach the last 2 weekends, not my favourite place, I used to hate walking on the beach, but I’m finding walking on the sand easier now, it’s not as exhausting. Movement is easier, and the knock-on effect of that is that you feel better, so you eat better and move better.”
When asked if the changes in appearance and mobility of her legs met her expectations, Kelly replied: “I don’t know what my expectations were, I just knew that what I was living wasn’t right. I knew it would be removed and that it would get easier. It’s the little things that surprise me. I can run up the stairs now and lift myself out of the pool.”
In January 2024, Kelly subsequently underwent her fourth Lipoedema extraction surgery, on her arms and abdomen, which resulted in a further 3.2 litres total of diseased fat being removed by Dr Lekich. Kelly has a fifth surgery scheduled for July 2024.
Kelly describes her relationship with Lipoedema as still a love-hate one and says that the biggest challenge when preparing for her surgeries has been overcoming the fact that she feels selfish. “In the long run, I know it will benefit everyone, although it feels selfish having to have a carer for two weeks, take the kids out of school and pay for accommodation on the Gold Coast.”
Kelly shares her journey in the hope to raise awareness of Lipoedema and wants other women with the condition to find mental and physical relief, as well as understanding that Lipoedema is not their fault. “If you’re looking at having surgery – investigate, research, do it. It will change you physically, emotionally and mentally. It’s long, it’s hard but you’ll get there.” Kelly says.