Meet Amy, a 34-year-old patient from Victoria who was diagnosed with Stage 3 Lipoedema. She first learnt about Lipoedema whilst seeing a vein specialist. Amy had vein issues for some time and had been seeing a specialist for several years. It wasn’t until her last treatment that she had a strange reaction to the treatment, leading her specialist to mention Lipoedema. Amy had never heard of the condition before, and after the diagnosis she delved into research, which she described as “a fast and intense learning process.”
Amy said the symptoms she experiences include painful legs and arms, as well as touch sensitivity in areas affected by Lipoedema. “I bruise very easily and sometimes it can appear quite intense,” Amy remarked.
She also experiences very heavy legs and arms, along with swelling in the legs. On reflection she said, “I think the most obvious symptom I had that I didn’t even know was a symptom was the sheer shape of my body.”
Amy described her teenage body as having larger limbs than her torso region, “My waist was always much smaller than the rest of the proportions of my body.”
Amy previously tried to lose weight but could only ever reduce her waist and bust areas, which she feels is an obvious symptom in hindsight. As Amy’s journey continues, she has become more aware of the symptoms and can possibly recognise it in some of her family members.
Describing the diagnosis process was straightforward as it was her vein specialist who provided Dr Lekich’s details.
“When I looked into Lipoedema Surgical Solution everything became a lot clearer for me. I feel Dr Lekich had my best interests in mind from the beginning and that is why I chose him. My first step was joining one of the Group Zoom Calls. This was an easy step in the process but also came with so much information. I remember taking pages and pages of notes of things that popped up during that Zoom call and preparing questions for the next step. I knew after this step that this was what I was suffering from, without a doubt. The next step was booking a one-on-one phone appointment. This step really confirmed all my previous research. I had answered several questions and sent in photos of myself for the team to look at.”
She said this was a little scary, but it was necessary in the very first real step towards dealing with Lipoedema.
Considering Lipoedema is out of an individual’s control, Amy described the mental side with Lipoedema to be really challenging, especially from outside pressure and perceptions. Despite explaining Lipoedema to people, she feels there is still a misunderstanding between their perception and reality.
Amy described the most challenging part, aside from the mental load of having Lipoedema, as the lack of energy from carrying her body around all day. She said, “I feel like my body is losing its flexibility, the only way to describe it would be that life has become a lot slower for me.”
In the lead-up to her surgery Amy said, “I have a very strict conservative management regime plan in place. It was important for me to put these in place as I wasn’t aware there were things I could do to alleviate my symptoms.”
She utilises custom-made flat knit compression on the lower half of her body as well as her arms, which she wears for 16 hours a day. She attends weekly manual lymphatic drainage (MLD) therapy. Amy believes just these measures alone have made a huge difference, especially MLD therapy.
“After my appointment I feel so much lighter and energised.”
She has also been mindful of dietary changes she can make where possible. On reflection from the past, Amy said dieting has had a significant mental impact on her whole life.
“I find that anti-inflammatory, low carb and high protein is something I feel better on and achievable.”
In May 2024 Amy had her first surgery utilising a protocol to manage underlying venous disease and a lymph-sparing technique. A total of 4.8 litres of Lipoedema fat was removed from the patient’s upper thighs by Dr Lekich. In August of the same year, Amy had 5 litres of fat removed from her posterior upper legs, and opted to have Renuvion to improve skin laxity/redundancy.
Concerning the future of her Lipoedema journey, Amy advised she is hoping to achieve a better quality of life, not just physically in terms of pain but also mentally.
“I’m really hoping to be able to move better, have more energy but overall have a better outlook on life in general.”
When asked why Lipoedema awareness is important she said, “The struggle is truly real in the sense that this condition is often misdiagnosed. When misdiagnosis happens it comes with a stigma that can be detrimental to a person’s mental well-being. If more people knew about Lipoedema and the symptoms and the struggles associated with it, it would be one more step in the right direction. Even educating a few people about what it really means would be a big achievement. Body positivity has become such a big part of my life and will always be a part of my life and being diagnosed with Lipoedema has really enforced that.”
“There are some brilliant people that have devoted so much time to educating people about this disease. If we can just be open to sharing our journey and talking about our experience and things that have worked for us personally, then I find we can make this process so much easier and less daunting to someone who is just starting out on their journey. There is nothing better than hearing people’s stories firsthand, to help you feel reassured and that it is okay. The stories and advice are incomparable. I would also say to other women: don’t feel like you must explain yourself to other people who don’t understand. I have been met with some judgement and misunderstanding from some, but ultimately, I don’t have the time and energy to explain my situation, my diagnosis or my treatment plan to those who won’t hear me. At the end of the day, I would love to surround myself with people who care and understand.”
