“So yes I can confirm your lymphoedema diagnosis, and you also have lipoedema … stage 2 I’d say.”

It was 2009, in the office of a vascular surgeon in Bondi Junction who specialised in oedema where I heard the word lipoedema for the first time.

I was seeking confirmation of a lymphoedema diagnosis that I got in 2005 (but didn’t want), but after persistent swelling and a dose of cellulitis that quickly developed into septicaemia, I was finally ready to seek a second opinion and accept what I deep down knew to be true.

I was not however, prepared in any way for that lipoedema diagnosis.

Now I do consider myself quite “lucky” in this. Unlike many other lipoedema patients who have to see multitudes of medical practitioners, and wait for decades to get their diagnosis, mine was what I now somewhat affectionately call my surprise diagnosis.

And even though I do feel lucky in this regard, I also STILL feel traumatised by the experience. Nobody’s at fault, it’s just that I was so ramped up by finally considering acceptance of my primary lymphoedema that the lipoedema diagnosis hit me very hard. I was full of grief over the lymphoedema confirmation, and full of fear over the lipoedema word.

After “stage 2 I’d say”, I don’t remember very much. I recall trying to get my clothes back on without allowing the avalanche of emotions to come flooding out of my eyes. I think the doctor might have been continuing to talk and perhaps explain but I couldn’t hear anything for the ringing in my ears, the stinging behind my eyes, the heat in my face, and the shaking in my body. I gathered up my belongings and left very quickly, fumbling for my credit card to pay the bill at the reception desk, hoping I could get through that shopping centre and to my car before totally losing it.

More about whether I made it or not shortly, but now, thinking back to that day, how I felt then, and what I know now, there had been some signs of lipoedema for years.

My legs changed dramatically with each of my pregnancies, but I’d presumed it was normal and life got busy with three little kids and a husband who travelled a lot for work. When I saw a specialist about my veins, the swelling, and the pain, he told me that it was all a venous issue and it would resolve with surgery to treat my chronic venous insufficiency. This was part of the explanation for what I was experiencing, but not the entirety.

My legs also changed again during an extremely stressful situation in my 30’s. I remember distinctly a day when a trusty pair of very nice trousers no longer accommodated my powerful and generous thighs … if I close my eyes, I can still see my own reflection in the mirror that day, and a deep knowing that something was very wrong. They still fit my narrow waist, but the thighs ….

I also remember massages I had where I had to make sure to explain to the therapist to keep the pressure very very light because my legs were so sensitive to the touch. Thinking back now to most of those massages being so excruciating that I would be sweating and shaking with the pain, I think of lipoedema. Part of that would have been attributed to the lymphoedema for sure (which can also make massage painful) but knowing what I know now, lipoedema.

Peppered throughout this time was (like many other lipoedema patients) was also “every diet under the sun” to reduce the size of my thighs.

You name it, I’ve done it. I distinctly remember the first diet I tried … it was explained to me by one of my husband’s work colleagues (who now I’m thinking about it, might have noticed my legs?). It was a very low calorie diet (aka a crash diet) which became popular in the late 1960’s and always “worked” very well the first and second time you did it … but just like every other very low calorie diet, it trashed the basal metabolic rate and ensured muscle loss and body fat increase with every round. Even to this day, and even as a nutritionist who knows without a shadow of a doubt that crash diets progress lipoedema … if I’ve had a bad day in the David Jones change rooms, that first crash diet is STILL the first diet that pops into my mind. Tragic and powerful. 

I became so addicted to weighing myself that for a long time, I’d weigh every 30 minutes whenever I could, and my mood was determined by that number on the scale – if it was down, I was up, and vice versa. I obviously had no concept in those days about natural weight fluctuations over the course of a day. Like many other lipoedema patients, I developed a debilitating eating disorder which took a lot of work and many years to recover from.

Since my lipoedema diagnosis, I’ve had a couple of emotional setbacks in my acceptance of this condition. In 2018, I was having an ICG scan for my lymphoedema when a senior doctor there told me that I couldn’t have lipoedema because I was too small – no physical examination, just a thoughtless and ignorant comment based on my size that tipped my world upside down.

I guess back then she didn’t have any training in the identification of lipoedema (which is why I’m such a staunch advocate for the development of diagnostic criteria) nor did she understand that lipoedema is not diagnosed by size. But regardless the damage was done and 18 months later I mustered up the courage to get 2 other opinions from people who were qualified to diagnose and understood the disease. Annoyingly, they both confirmed my initial lipoedema diagnosis back in 2009.

And maybe you’re wondering if I got back to my car on the day of my initial lipoedema diagnosis in 2009 without crying?

Nope. My husband (who was in India on business at the time) intercepted my bee-line through the shopping centre for the car with a phone call to see how I’d gone with that lymphoedema diagnosis … he knew how wound up I was over it, hoping the doctor would say it was something that could be cured with a pill.

As soon as I saw it was him calling me of course I answered, thinking I could continue holding back the tears, but as soon as I heard his voice the waterfall started and I hauled myself into a corner of this major shopping centre, face to the wall, crying so much I couldn’t speak (I still can’t recall that moment without crying even to this day). He knew it meant my diagnosis had been confirmed, but he obviously didn’t know that I had this surprise lipoedema diagnosis in addition. And in fact he wouldn’t know about it for 2 years. Because I didn’t tell a soul for that long.

I parked that diagnosis very firmly in a dark recess of my mind until I was ready to work with it. And I do not begrudge that I did that. I rarely give myself space like this … I’m the kind of person who usually throws everything I’ve got at a problem immediately, but not in this case.

I know a lot of people with a lipoedema diagnosis feel relief, and I totally understand that. It just wasn’t my experience.

And what I want you to know is that no matter the circumstances that surround your lipoedema diagnosis, your response to it is appropriate and more than acceptable. Be kind to yourself, handle it when you’re ready, be your own best advocate, and don’t take shit from anybody.

What I’d love to see develop, is increased awareness of this condition so that people like me might be invited to a conversation about lipoedema at an earlier stage. I’d love for doctors and specialists to be able to identify it, and to provide resources so that patients can experience earlier conservative management strategies. I’d love for there to be no shame around a diagnosis of lipoedema. I’d love for people with lipoedema to not have to wait decades for a diagnosis.

Lipoedema Awareness Month, 2024.