Meet Caitlin, a 24-year-old office administrator from Sydney. Caitlin says she first learned about Lipoedema after watching a video on Instagram. “It was so great to find that video” Caitlin says, “I knew straight away that’s what I have, I’d been suffering (from those symptoms) for half of my life.”
Since the age of 12, Caitlin says her legs remained large, painful and unaffected by diet and exercise. In grade 7, Caitlin was forced to stop both dancing and netball due to the pain and inflammation in her legs, despite enjoying both. Over the years, Caitlin says her symptoms only got worse, including swelling, shooting pains, bruising easily and the size of her legs remained disproportionate to the rest of her body. In the past year, Caitlin says her arms have also begun to swell. At one stage Caitlin says an orthopaedic surgeon noticed the fluid in her legs, however, she says he was unsure what to do for her.
As a young adult, Caitlin says 1 shift at her bakery job would take 2-3 days to recover. Standing for long periods of time became increasingly difficult due to circulation issues and fear of passing out and most recently, Caitlin was forced to close her own baking business due to the pain in her arms.
Caitlin says all these symptoms not only took a toll on her physical health, but her mental well being has also been affected. Caitlin avoided showing her legs and arms, and her self-confidence has really suffered.
After completing her own research online, Caitlin found a supportive local GP, who then referred her to a Manual Lymphatic Drainage (MLD) therapist. It was at her first appointment with the MLD therapist that Caitlin was diagnosed with stage 2 Lipoedema in March 2023. “It felt surreal, but not surprising” Caitlin says. Following a recommendation on social media, Caitlin decided to book a Group Zoom Call with Dr Lekich in May 2023, and subsequently had an appointment with Dr Kim Jackman who confirmed her Lipoedema diagnosis.
During a review appointment with Dr Lekich in July 2023, Caitlin was advised to undergo some vein treatments in preparation for Lipoedema-Extraction surgery, which Caitlin says helped with pain relief. Caitlin’s other conservative management measures in preparation for surgery included regular MLD therapy sessions, utilising compression garments, eating an anti-inflammatory low-carb, high-protein diet, swimming and walking in a pool and daily use of her compression pump.
In September 2023, Caitlin underwent her first surgery with Dr Lekich. Utilising a protocol to manage underlying venous disease and a Lymph-Sparing technique, the Lipoedema-Extraction surgery resulted in 4 litres of diseased fat being removed from her lower legs. Caitlin described the first 2 weeks post-surgery as being the hardest, in terms of pain management, as she experienced nausea and difficulty sleeping, however, Caitlin utilised her compression pump daily and said things significantly improved at around 2 weeks and got much better by 3 weeks post-surgery. At 6 weeks post-first-surgery, Caitlin said “My legs feel a lot lighter already, I have knees and ankles now. I’m very happy with the surgery so far.”
In November 2023, Caitlin subsequently underwent her second surgery on the anterior of her upper legs, which resulted in a further 3.7 litres of diseased fat being removed by Dr Lekich. For this surgery, Caitlin opted for a lighter anaesthetic and although she said it felt a little ‘strange’ Caitlin also says of the experience “After the surgery I felt more in control of my body, I think I’ll choose this option again as the recovery seemed easier this time.”
In February 2024, Caitlin underwent her third surgery on the posterior of her upper legs, resulting in a further 2.8 litres of diseased fat being removed by Dr Lekich. Finally, at the end of April 2024 Caitlin underwent her fourth and final surgery, resulting in 2.7 litres of diseased fat being removed from her arms and abdomen combined, by Dr Lekich.
Caitlin says the cost of surgery has taken a big toll financially. Having always been someone diligent with savings, Caitlin had hopes of buying her own home one day. “Now all those savings have gone towards paying for surgeries.” Caitlin says.
Emotionally, Caitlin says her family has been her biggest source of support, particularly her mum Louise, who has travelled with Caitlin for all her trips to the Gold Coast and played a great role as carer each time post-surgery. “You need someone with you 24/7 even for basic things” Caitlin says, “having someone by your side is so important.”
Caitlin says she most looks forward to a life free from pain and is and is planning an overseas holiday with her partner at the end of 2024. Caitlin says it has been really special being able to share her journey with others, and since she has begun documenting her story online, other women, including close friends and family members have begun to reach out to Caitlin and share their own experiences. “I’m so grateful to be able to help others on this journey, and I hope to inspire many others to seek a diagnosis.” Caitlin says.
Read more about Caitlin’s journey on her Instagram page.