A woman who assumed she was "curvy" had over 6.5 litres of nodule fluid drained from her legs after she discovered she had a rare condition - by watching YouTube videos. Alisa Vandercruyssen, 28, started to get bigger legs, arms and abdomen from aged 17 - despite living an active lifestyle.
Despite multiple trips to the doctors, they assumed she had a weight issue and gave her pamphlets for diet and exercise. Alisa had a healthy diet, regularly exercised and even tried weight loss drugs but her limbs continued to grow and cause her pain.
She thinks her condition has caused her to gain around 3.5st. Alisa thought she might have the chronic condition lipoedema - an abnormal build-up of fat - after watching a YouTube video and was given her official diagnosis in Novemeber 2022.
Doctors told Alisa she would need six surgeries to remove the lipoedema nodules - of which she's so far had one. Alisa, an aesthetician from Royal Oak, Michigan, US, said: "I'd always been active and pretty trim and then without any lifestyle changes I started to get bigger and bigger.
"Then I was on Ozempic, the highest dose, for six months and I did not lose weight. It looks just like fat so you get diagnosed with obesity all the time. I came across it on YouTube and brought it up to the doctor after watching a vlog about it. I questioned why I was relating to everything she was saying.
"I realised I had to have six to seven surgeries and I've had one so far where they removed 6.5 litres of nodules from my upper thighs. It's already made a difference in my energy and I feel better whilst I'm healing post op, it's crazy how much it affects your life." Prior to her diagnosis, Alisa's unknown condition left her in constant pain.
She struggled with everyday activities, such as going to work and says she felt like she was "in a suit." Alisa said: "Before the diagnosis I thought I just had thicker legs and cellulite.
"But it feels lumpy as it's nodules forming. It's like tumours forming under your skin. All the places that were fatty felt like that. It's harmful as it's a progressive disease. It's constantly growing.
"Even normal everyday things are painful to do as you're sitting on the nodules. It was a lot of pressure on my knees - I had so much bulk." Alisa maintained a healthy lifestyle and started to embrace her looks after seeing no changes before being diagnosed.
She said: "I was constantly cutting. I had a personal trainer and I looked at my before pictures and then looked at myself after six months and I looked worse.
"I had a strict diet too and I still couldn't get a hold on this. I was trying to cook lots of things. Lots of veggies, more protein than anything. I had a low carb diet, went to weight watchers, and a crazy diet from my personal trainer.
"I started to embrace it and thought 'I guess I'm this curvy girl, that's how I am going to be.' It was a huge relief when I was diagnosed but at the same time it was sad as I just thought I could have had way more fun as I was way too focused on looks."
After her diagnosis, Alisa decided to have the lipoedema nodules removed and travelled out of state to a specialised centre, Lipedema Surgery Centre, Roswell, Georgia, for the surgery. Alisa had to fork out $8000 for her first surgery, but the rest of her operations are covered by insurance.
Alisa said: "I was told I could be referred to a plastic surgeon and the only option of getting rid of it is through surgery. It's called water assisted lipo-suction.
They take a water hose and break down the nodules and then suck it out. It sits directly under the skin and it's very easy to get to.
"They don't have to go very deep and it took two to three hours. They took out 6.5 litres out of just my front upper thighs."
Alisa says she feels "relieved" after her first round of her surgery. She said: "I'm trying to focus more on how i feel than how I look.
"It will be nice to have an easier time finding my size in stores, but feel more energy and walk without pain! I'm excited to see the muscle I've built working out all these years."
Alisa will be returning to the surgery to have the rest of the lipoedema nodules removed. She said: "I know how sad and lonely it was to be in my body.
"But other people don't know that they're doing everything they can and it's not their fault at all. It's very underdiagnosed and under researched."
