Lipoedema is common but not commonly diagnosed. Although it could affect up to 1 in 9 women, not many people are aware it even exists. My case is pretty textbook, but it still took me going to the GP and pushing repeatedly to get a diagnosis. This situation is not unique. A 2014 survey by Lipoedema UK showed that only 9% of respondents were diagnosed by their healthcare practitioner the first time they mentioned their symptoms, and only 5% were given that diagnosis by their GP. The more awareness we can spread about lipoedema, the better the chances of people who are affected being able to advocate for themselves and get support.
What is lipoedema?
Lipoedema is an abnormal build-up of fat usually in the legs, but it can affect your hips, bum or sometimes arms in different combinations. It is most common in women, but can affect men and non-binary people too.
“Fat?” You say. “Just diet!” Sadly it’s not that simple. Lipoedema fat is different to your standard fat, and it’s resistant to diet and exercise. Just to add insult to injury, it’s also bloody painful. It makes the areas affected much more tender than your limbs would normally be.
Lipoedema affects people of lots of different sizes, symptoms include:
- Cool skin on your legs
- Orange peel textured skin on your legs
- A lack of definition between your upper and lower legs
- Banding round your ankles
- A narrow waist, and a disproportionately small upper body
- Pain or heaviness in legs or arms
- Tenderness in affected areas
As I mentioned before, diagnosis of lipoedema is not common, but it is important. Lipoedema is a progressive illness. Although there is no cure, the sooner someone is aware of it, the sooner they can start to maintain their skin, use compression to help with the discomfort, and try to stop it developing further. Some people benefit from excluding certain foods, and regular exercise and lymph drainage can be beneficial too. Diagnosis means health care professionals will also be able to make informed decisions about medications which won’t exacerbate the condition and monitor periods of hormonal changes such as pregnancy and menopause when lipoedema can progress. It can also just be a relief to understand why your body isn’t responding to diet and exercise in the way you expect. Eating disorders are more prevalent in people with lipoedema because our bodies don’t respond to diet and exercise in the same way as others do. You can do everything “right” and still gain weight – or lose weight but gain bulk in your affected areas.
Diagnosis can be tricky, I’ve always been fat, despite exercising regularly and eating relatively healthily (I admit I’m partial to crisps). I assumed I was just messing up nutritionally and doing a bad job of inputting on MyFitnessPal. Then, as part of my role at work, I began researching lipoedema for one of the medical staff. A lot started to look very familiar. Those legs were my legs. I bruised really easily. My fat felt like beans under my skin, it wasn’t smooth and springy, my legs were always cold to the touch and extremely tender. Turns out not everyone feels pain from sitting or light pressure! Who knew?
I thought at that point it was pretty open and shut. I rocked up to the GP, confident that with my wealth of professional literature search acquired evidence I would have no problem. I was incredibly wrong. The doctor hadn’t heard of lipoedema. They didn’t look it up or examine me for any of the key symptoms. They did however decide that I was wrong and had diabetes and high cholesterol. Couldn’t think why… I had to go back a few weeks later for blood tests, then wait another few weeks for the results. After then waiting another few weeks for my follow up appointment I was told I had “surprisingly good” cholesterol and my blood sugars were fine. Great news! Surely the only option now was to refer me to the clinic which specifically dealt with lipoedema? Right? WRONG!
The doctor decided they would refer me to the endocrinology team – still at least slightly convinced it was diabetes related. At this point, I was frustrated, confused, and thoroughly peeved. I understood that they had to be thorough and check everything, but outright ignoring me was not filling me with confidence. I decided to chance my arm and ask to be referred to the wound clinic at the same time. If they were correct and it wasn’t lipoedema then I would be dismissed and still retain the other appointment. Thankfully the doctor agreed, because the wait for the other clinic was over a year (and I don’t have diabetes).
At the clinic they took a brief look at my legs and told me that they weren’t able to officially diagnose me, but that it was very likely I had lipoedema. I cried. Not out of sadness, but frustration at all the years I’d spent blaming myself and hating myself for something which was part of a chronic condition which had been perpetually missed. I look very textbook, I could be in the textbook, and yet no one had picked up on it.
There was no clear plan for getting officially diagnosed, but I wanted it on my notes in case I was ever admitted to hospital and unable to advocate for myself. In the end my diagnosis happened during some Manual Lymph Drainage sessions to help with the pain (which cost £60 a pop out of pocket as they’re not available via the NHS).
I wish the process was simple, and I wish that it was more accessible. I’m incredibly lucky to be able to pay for some private treatment, not everyone can.
What are we doing about it?
Because of our experiences, a group of people who have lipoedema along with some fabulous supportive pals decided to launch an awareness campaign – Lipoedema IOM. We did some preliminary research to gauge current knowledge on the Island and shared a survey in local Facebook groups. 58% of 160 respondents said they knew what lipoedema was (wahoo!), but 62% of them were aware because they knew someone with it. Our sample group was definitely a bit skewed!
Great news on the awareness!
But we think we skewed things slightly…
Our first initiative is raising awareness of some of the symptoms that can indicate lipoedema. By talking about disproportionate, heavy feelings, easily bruised, and difficult to lose weight from legs we hope to help people discover if they have the condition much earlier. Other symptoms like bean-like fat nodules under the skin, dimpling, skin dryness, pain, and cool to the touch legs are also common, but not necessarily easily recognised. It’s a mixed bag, but one which more people should know about – especially so they can prepare for the impact of life stages on the condition. It is chronic and progressive, but the sooner someone knows they have it, the sooner they can start to look after the affected areas in the right way and try to stop it progressing!
We are sending the information to GP surgeries, libraries, and offices to work with them in promoting awareness of the symptoms of lipoedema – hopefully helping someone who is struggling.
Thank you for taking the time to read about this, and please consider sharing one of our awareness posts. You never know who you might be able to help! Remember to ask yourself, could it be lipoedema?