Nola Young, 57, Doreen, Vic
Walking into the store, there was a display of shorts.
No way I'm wearing those, I thought, picking a long skirt from the rack instead.
My legs hadn't been seen in public since I was 14.
When I reached puberty, they suddenly ballooned into a tube-like shape, straight down from my hips to ankles without any curves.
They felt swollen and sore to the touch, too.
I asked my GP if something was wrong.
'It's nothing a good diet and exercise won't fix,' the doctor said, implying I was simply overweight.
But I'd always been active and sporty at school.
While my top half was slim, it was just my legs that were large.
It didn't make sense.
I searched desperately for answers but it wasn't until I was 48 that a specialist finally diagnosed me with lipoedema.
'It's a chronic disorder that leads to the build up of fat in the legs and thighs,' he explained.
I was so relieved to have an answer.
Sadly there's no cure but it can be managed.
Now I wear compression stockings that massage my legs, do hydrotherapy, follow a careful diet and walk five kilometres a day.
By the time I was diagnosed, my lipoedema had reached stage-four, the most advanced phase.
It's contributed to the arthritis in my joints and affected my walk and balance.
If I'd been diagnosed earlier, I could've saved myself years of pain and heartache.
Now I'm sharing my story to raise awareness of the disorder so others don't have to suffer like I did.
I'm president of the Lipoedema Australia Support Society and am working to support other women like me.
Find out more at www.lass.org.au
- Lipoedema, also known as painful fat syndrome, is a chronic genetic disorder that leads to the abnormal build-up of fat cells.
- It most commonly develops in the legs, thighs and buttocks.
- The condition occurs almost exclusively in women, although there have been rare cases reported in men.
- An estimated 11 per cent of women could have lipoedema.
This story was originally published in that's life! Issue 34, August 27, 2015.