“Stop calling me obese. My weight has nothing to do with diet and exercise.”

Video via ABC iView

I am a 45-year-old woman married with two beautiful,teenage children.

I love them to bits. They are my reason for waking up every day, but I had been living with a terrible condition, and this is what it felt like.

“Roll up, Roll up, come and see the largest women in the universe. Walking into any room with anyone.”

Family, shops, business meetings. It wasn’t me having a complex. My body was pushing out of a size 26 and I had absolutely no control over it. I was losing mobility, walking was difficult, everyday functioning was becoming impossible.

I have been used to doctors giving me lectures my entire life. I’ve been given diet tablets, told to have lap banding, told I needed to exercise, told I needed to basically stop eating.

It took me 15 years to be diagnosed with lipoedema. I am one of millions who walk around thinking my ‘obese’ condition was all my fault.

It took me 15 years to be diagnosed. (Image provided)

Lipoedema is a chronic disorder of adipose tissue and lymphatic vessel dysfunction "described as a bilateral, symmetrical, flabby swelling of the legs that arises from deposition of adipose tissue starting at the hips and ending at the ankles, encompassing the arms and stomach as well.

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My tipping point came when I was on a family cruise. Heat and my huge heavy body did not go well together. Anything over 24 degrees and my legs started to grow. I had a pretty horrible time on the trip. I couldn't get off the ship as the tenders were so small, so I had to sit on the deck watching my husband and daughter go off and enjoy themselves while I watched with my binoculars.

What the hell was happening to me?

I was once told by my niece on my husband’s side as she sat beside me and spoke to her mother “she is the fattest lady in the entire world mummy”. You know things are bad when your sister in law doesn’t even scold her child for saying that to me. They weren’t speaking about another fat person either – it was me.

The one and only Super Morbidly Obese fatty. It hurt so much.

When I got home I started to research. It appeared that a lot of women in the U.S. had this as well. They had clinics and doctors who actually knew what it was and they weren’t all being told that they were obese like we are here in Australia.

There were a few doctors who did surgery on this condition. They were very rare to find but were actually successfully operating on people my size, at that stage 175kgs.

My GP told me that it was impossible. I would die under anaesthetic. So I put myself on a 600 calorie a day diet which wasn’t that hard. I was averaging only 800 calories anyway. No carbs.

I contacted a few doctors. At reception, a calm lady who had dealt with a lot of patients in the past, was interested in the fact that I could walk unassisted . I just used my legs. Apparently, this was amazing because I was very advanced in my diagnosis. Late stage three early stage four lipo-lymphedema. With a small amount of obesity.

I arrived at St Vincents in Melbourne to see Ramin Shayan. I walked into Mr Shayan’s rooms. We spoke for a little while. I had my daughter with me for support. He took down some history of my family – spoke to me about his qualifications then asked me to take off my pants so he could see my legs. He looked concerned. You know that type of concern that is concerning to you as the patient because you can actually see the doctor with it on his face?

Then he said the magic phrase "I can operate and give you full mobility before you lose it completely."

Dr Shayan then went on to describe the procedure: "We can operate on your legs, arms and stomach. We can give you full mobility. I can use power assisted liposuction and skin excision. We can remove the damaged fat cells in your body and stop the growth.

"We can remove the excess skin to give your leg back shape and it will also allow your lymph system to start to work again. This will make life a lot easier for you. At the moment we are not calling it a cure but it certainly will stop the lipoedema in its tracks. You will need to continue dieting and exercising post-surgery but you can do that. It will give you back life."

This man was proposing to operate on me and give me back life. Where do I sign up?

My compression bandages. (Image provided)

After a few surgeries, I can now independently lift my legs up, by myself. No one needs to help me. I can walk. Fast!

I have lost 15.4 kgs. I am writing this 25 day post my second surgery. I do still have days when I just cry. Apparently that is pretty normal.

Mr Shayan has sourced funding to genetically research why people get lipoedema. How does it affect our family?

They know it is genetically transferred, we think in our family it has come through my dad’s side. My daughter Milli has also been diagnosed, she is nothing like me, Milli is a pre-stage one. At least we know for Milli there are options and early intervention.

It is a pretty surreal feeling to have new smaller legs. I’m so used to looking down and seeing pain and feeling pain.

It's been a pretty big journey, but for once in a long time I can say I am starting to enjoy it.

Have you suffer with lipoedema? Tell us your story in the comments below.

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