Meet Karen, a 54-year-old patient from New Zealand who, like many others, had no idea she was living with Lipoedema. She had been following a Keto diet and was active in a Facebook group dedicated to the Keto lifestyle when she stumbled across an article about Lipoedema. Karen recalls thinking, “I’ve never heard of that before,” and as she continued reading, it was like a lightbulb moment. The symptoms described mirrored her own, many of which she had been experiencing for some time.
Karen’s symptoms began around eight years ago. She noticed swelling in her right leg, a constant feeling of heaviness, and persistent pain. Her ankles ached, walking became difficult, and even standing up was a challenge. She also felt a burning sensation in her arms, which made using them difficult.
Like many Lipoedema patients, Karen faced the frustration of being misdiagnosed. Despite her troubling symptoms, her GP dismissed her concerns, attributing them solely to menopause without exploring other possibilities. Lipoedema was never suggested, even though she repeatedly sought answers. This misdiagnosis, common for women of her age, reflects the broader issue of medical professionals being unfamiliar with Lipoedema. As a result, Karen endured years of pain and confusion without clarity.
It wasn’t until 12-18 months after she first learned about Lipoedema that Karen returned to her doctor, this time armed with more information. She directly asked, “Do you think I could have Lipoedema?” Her doctor admitted they were not trained in the condition and knew little about it but agreed to support her as best they could. Unfortunately, finding a local doctor with knowledge of Lipoedema was a difficult task, a struggle that many Lipoedema patients face.
Karen eventually found a practitioner online, but her journey took a detour when she was misdiagnosed with Lymphoedema. She spent nine months under this practitioner’s care before joining a Group Zoom Call with Lipoedema Surgical Solution. Six months later, in May 2023, she finally saw Dr Lekich in person, receiving a confirmed diagnosis of late stage 2, early stage 3 Lipoedema.
Karen’s treatment began with Conservative Management. She started wearing class 2 flat-knit compression garments, maintaining a balanced diet with the guidance of a nutritionist, and using tools such as a compression pump, a rebounder, and a vibrational plate. She also underwent Manual Lymphatic Drainage therapy, which she committed to for over six months. Despite her efforts, the emotional toll was significant. Karen reflected on how Lipoedema had stolen her ability to enjoy outdoor activities with her family, such as walking, which had become too exhausting and painful.
Karen has six sisters, none of whom have Lipoedema, and she suspects the condition may have been inherited from her biological father, whom she never knew. She also has four daughters, two of whom have been diagnosed with Lipoedema. While the disease doesn’t currently affect her daughters, Karen is relieved they are aware of it. This awareness allows them to take preventive steps, such as maintaining a balanced diet, staying active, and avoiding unhealthy habits like excessive drinking, which may help delay the onset of symptoms.
In September 2023, Karen underwent her first surgery with Dr. Lekich, where 4.9 litres of Lipoedema fat were removed from her anterior thighs using the minimally invasive, Lymph-Sparing technique. A second operation in December 2023 removed another 4.9 litres from her posterior thighs. In April 2024, a further 2.4 litres were removed from her arms, and she also opted to have Renuvion to improve skin laxity/redundancy.
Now, with three surgeries completed, Karen continues to manage her condition conservatively. She’s hopeful that one day she can transition from class 2 compression garments to class 1 or possibly avoid them entirely. Mentally, she is in a better place, feeling more prepared and consistent in her management efforts.
Karen believes Lipoedema awareness is critical. “We should be able to go to a health professional and get help,” she says, “but there’s such a small circle of people who know about this.” She hopes that with increased awareness, there will be more research, answers, and solutions for people like her. She recalls many instances where she was brushed off by healthcare providers, but her message to others is clear: if you suspect you have Lipoedema, advocate for yourself. Don’t allow anyone to dismiss your concerns. As Karen puts it, “You’re not only advocating for yourself but also for your children, grandchildren, and future generations.”