Last week I was officially diagnosed with lipoedema at Waikato hospital. It is something I have known about for 10 years. and even though I did not always have a name for it, have known in my body it was my truth since I was about 12 years old.
If you’re in New Zealand you may not have even heard of lipoedema so let’s start with what it is.
What is Lipoedema?
Lipoedema or lipedema (US spelling) is a fat, fluid (lymphatic) and connective tissue disease that mostly effects the legs and for many like myself arms too.
Lipo meaning fat, edema meaning fluid accumulation. The connective tissue part is a more recent discovery.
Lipoedema is genetic and hereditory. In New Zealand it is still largely unheard of, even though studies suggest it may affect around 11% of the female population.
Lipoedema is not just aesthetic, many sufferers have debilitating pain either on pressure or due to damage caused by edema and abnormal fat. Many women are in constant pain.
There is increased vascular fragility and easy bruising is one of the symptoms. Lipoedema fat is unable to be metabolised by the body and does not generally respond to weight loss or calorie restriction. In fact many Women have developed eating disorders as their bodies have spiraled out of control and have ended up emaciated on top, but their legs were still very heavy and abnormally large.
The edema component of Lipoedema is non pitting and feet are generally not affected. Some women go on to develop secondary lymphedema as well.
Lipoedema is considered a progressive disease and many women report lipoedema in other areas of their body as the disease progresses, including their abdomen.
The skin in affected areas is often very cold to the touch and even after my thyroid normalised and my basal body temperature increased, my feet remained freezing cold most of the time.
My Story
As mentioned I knew I had this for around 10 years before pursuing a diagnosis. Partly because I wondered if insurance funded surgery might be in my future and partly because I created a large facebook community for lipoedema in NZ and saw so many women get shamed when they sought diagnosis.
Yep the old ‘you need to eat less and exercise more’ ugh!
For many, myself included lipoedema showed up at puberty. While our genes lay the foundation it is our sex hormones that fire it up, which is why it is rare in men.
For some it won’t show up until perimenopause or post child birth. Some Women even report that it showed up for them after significant distressing life events so cortisol is implicated too.
At around 12 years of age people were commenting on my legs. So I covered them up and hid them away. I noticed that no matter how active I was, my legs were not toned like my friends. I had good muscle mass, but you could not see it due to swelling.
I was very active at this age and was not overweight elsewhere on my body. I walked everywhere and was obsessed with roller blading spending most of my waking day moving.
My arms were affected from an early age also. I had ‘bingo wings’ as a teenager and could not understand why my body behaved so different to everyone else’s. Even my size 8 friends would often say ‘how can you be a size 12 when your waist is smaller than mine’?
I intrinsically knew that nothing I was doing was causing this, but when others are shaming you it is easy to start gaslighting yourself.
So I developed disordered eating trying to manage it. When extreme calorie reduction did not change my limbs – I went in the other direction and just ate absolute dopamine buzzing crap. I also started drinking a lot too to give me back some of the confidence that had been stripped away.
Even though I was abusing my body that lifestyle took some time to catch up on me.
I had already changed a lot for the better before the cracks started to show. Becoming a parent has that effect on you.
What changed things for me
When my health really started to fall apart in my 30s, I had to start looking at my health differently – holistically.
I was experiencing severe fatigue, thyroiditis, mast cell activation syndrome, on top of worsening lipoedema pain, swelling, inflammation and progression.
I had exhausted the medical system for all the acute symptoms when my integrative doctor told me we would be working with nutrition only.
When I healed my gut, I healed my immune system.
My thyroid settled and my allergies calmed down.
The swelling in my legs reduced, along with the chronic pain and inflammation.
That was a turning point for me.
For the first time in a long time, I felt good again.
I had energy.
I could move more.
And I felt so damn good I was inspired to retrain from a teacher to a nutritionist to help others experience what I was.
The only problem was the mental and emotional block here was huge!
Could I be a nutritionist when I didn’t fit the mould?
There was less body acceptance then, and I heard a lot of:
“Find a nutritionist who looks like you want to look.”
Ugh.
I got over myself for people like me.
Because do women struggling with their health really need someone who has never experienced it… telling them they just need to try harder?
What I came to understand is that while lipoedema is a genetic, progressive condition – the environment within the body still matters.
Things like:
• inflammation
• hormone shifts
• stress load
• nutrient status
• lymphatic flow
All influence how it shows up and progresses.
I was going really well… until perimenopause humbled me.
For me, early perimenopause coincided with a period of extreme stress – divorce, starting my business, building new foundations from scratch, some really major life changes.
It felt like my progress disappeared almost overnight.
My legs flared again.
My immune system crashed.
I experienced mast cell activation again, shingles, and even experienced bell’s palsy this time.
That was another turning point.
Because it reinforced something I now see often in clinic:
Perimenopause can be a vulnerable period where underlying issues surface.
By the time I went for my diagnosis at Waikato Hospital, I had managed to create change again.
This time it looked different.
It came from:
• self-compassion instead of punishment
• supporting hormone clearance
• stress management
• rebuilding my energy
• calming my immune system
I actually had very little swelling present at the time of assessment.
How my story shaped how I work with clients
I listen.
I research.
I believe them.
And even when someone has a condition that requires lifelong management, I look for the underlying factors that may be making it worse.
Instead of focusing on one symptom or one diagnosis, I look at:
• gut health
• inflammation
• metabolic function
• nervous system load
• hormone clearance
Because these systems don’t operate in isolation.
It took me a long time to realise that even though I had not rid myself of lipoedema I could still help others.
If you’re navigating lipoedema and want to understand what may be worsening your symptoms, and what could genuinely help, the next step is to book a one-to-one session with me.
This is where we look at your body as a whole and create a plan that is realistic, supportive, and sustainable.
You can book an initial consultation here
If you would like to join the Lipoedema New Zealand community on Facebook where you can learn more about how to get a diagnosis in your area and join over 2 thousand women like you, you can join here
