“As sufferers of Lipoedema, we need to speak up – women’s health is often neglected because the majority of decision makers are men, unless they have a loved one suffering they are clueless to what Lipoedema does as it progresses.”
How would your friends and family describe you?
Passionate (sometimes stubborn), loyal and loves life.
When did you first suspect you had Lipoedema?
After birth of my second child 8 years ago at age 40, I knew something wasn’t right, so did the medical professionals although no one could tell me what was wrong at that time.
How did you first learn about Lipoedema?
I first learned about Lipoedema from a segment on the tv show The Project.
Can you describe what symptoms Lipoedema presented for you and how these may have changed over time from your first awareness/diagnosis?
Following the birth of my son via C Section, I was in excruciating pain and my legs ‘blew up’. This continued for 4 months and my weight exploded by nearly 30kgs. My maternal health nurse said she had seen it before but didn’t know what it was, so advised that the pain would likely stop once I finished breastfeeding. Although I did stop breastfeeding not long after that, the damage to my legs was already done. It was about another 12 months before I found out I had Lipoedema. I managed to loose 20kg but now have about 10kg of Lipoedema tissue in my legs and arms, although I don’t experience pain.
What are the main challenges that Lipoedema has presented from an overall lifestyle point of view?
I have had to learn to not push myself too hard physically, or over heat in hot weather. It’s also hard to get clothes to fit having a size 8/10 waist and larger legs.
What are the main challenges that Lipoedema has presented from an overall health/wellbeing point of view?
Frustratingly, most medical professionals have never heard of Lipoedema and even when it is brought to their attention – many are ignorant and say it doesn’t exist. This makes it hard to have a clear, overall medical history and if Lipoedema is not part of the picture, understood and taken into account – medications resulting in weight gain could be prescribed.
What words of support or hope can you share with women living with Lipoedema?
We never asked for this, so we must keep advocating for ourselves and educating ourselves. We must do everything possible to lose all non-Lipoedema excess weight and keep it at bay, this allows us to stay active and keep our mobility. Remember just as symptoms and triggers present differently, so do lifestyle changes and treatments. What works for one may not work for others, stop dieting educate yourself on proper nutrition.
What do you wish you knew at the beginning of your Lipoedema journey?
I wish I knew that opinions would be wide and varied on how people view Lipoedema.
What’s something that people often don’t know about Lipoedema?
Lipoedema is not always hereditary, you don’t always have pain and bruising and you can’t always feel it. Symptoms are wide and varied, likewise, the onset is not always same.
Why do you think it’s important to advocate for awareness of Lipoedema?
We need to get a definitive test developed so there can be no disputing someone has Lipoedema. There also needs to be standard treatment and management guidelines for medical professionals to follow. As sufferers of Lipoedema, we need to speak up – women’s health is often neglected because the majority of decision makers are men, unless they have a loved one suffering they are clueless to what Lipoedema does as it progresses. Unless you are diagnosed and receive treatment early on, your mobility quickly becomes diminished.
What do you hope to achieve on your Lipoedema journey from here?
I am hoping to remain active and keep fibrous at bay, as well as hoping and praying menopause doesn’t cause further progression. Surgery is an option but logistics with a young family limit my ability at this point in time.
