What is Lipoedema?
Lipoedema is a chronic, progressive disease which almost exclusively affects women. It is characterised by an excess build up of bilateral adipose tissue (fat) mainly affecting the hips, buttocks and legs. As the disease progresses, it can also develop in the arms, abdomen and other areas.
Individuals with lipoedema often experience fluid edema in the legs, exacerbated by standing. When only lipoedema is present, this swelling will be temporary however, as lipoedema progresses, sufferers are at risk of developing secondary lymphoedema, with more persistent swelling in the limbs.
The fat deposits in the lower half of the body often create a stark disparity between the top and bottom halves. It is not uncommon for individuals with lipoedema to be three or four sizes smaller on their top half compared to their bottom half. This adipose tissue is also often painful, with many sufferers stating that the slightest touch to their legs or affected areas can cause extreme pain and many attesting that they experience daily, chronic aching and fatigue. Sufferers also report regular and unexplained bruising to the affected tissue.
Lipoedema is thought to be a genetic disease which is hormonally responsive, with rapid lipoedema growth being reported at puberty, in pregnancy and in peri-menopause. Rapid growth has also been reported during times of stress and following surgery. As growth progresses, fat lobes and fat pads on the backs and fronts of the legs put stress on the joints and cause an abnormal gait. As a result, many advanced lipoedema sufferers have impaired mobility, many walking with sticks or crutches or are become wheelchair users.
There is still relatively little known about this painful fat condition. Many physicians are unaware of the condition and, as such, it is often mis-diagnosed as either obesity or lymphoedema. Many women go undiagnosed or are diagnosed after three or four decades of living with a body that does not make sense to them.
It is estimated that approximately 11% of women have lipoedema. This is currently (as of the 2016 census) approximately 3.7 million women in the UK alone. Due to misdiagnosis and under-diagnosis, the vast majority of women that do discover that they have this disease, do so when they are in the more advanced stages and suffering significant effects on their quality of life.
A key aspect of lipoedema is that this (often fibrotic) fat is resistant to diet, exercise and weight loss surgery. In fact, caloric restriction and excess exercise have both been shown to increase lipoedema growth. An individual with lipoedema will often have a history of repetitive and often extreme weight loss measures, resulting in some weight loss to the upper body but almost no change to the fat composition of the legs, thighs and buttocks. Dietary and exercise interventions are then followed by an increase in fat deposition. Due to the lack of recognition of the disease, these women will, more often than not, be considered by physicians, peers, strangers and even family as being non-compliant or lacking in will-power. This usually leads to a sense of inadequacy and failure on the part of the sufferer. It is no surprise then that significant co-morbidities of lipoedema are psychosocial disorders such as anxiety and depression. Other co-morbidities include diet-induced obesity and also hypermobility – often Ehlers Danlos Syndrome.
In a paradoxical twist, the lipoedema sufferer, whilst incorrectly considered to be obese, usually has a lower blood glucose level, lower cholesterol level, lower pulse, lower blood pressure and lower risk of cardiovascular disease. This is suspected to be due to the high ratio of gynoid fat as opposed to android fat.
Current treatment options for lipoedema.
Due to a lack of recognition for this disease, current treatments are limited.
There is currently no cure for lipoedema and existing treatments focus on managing symptoms and improving quality of life for the individual. Medical grade compression garments are at the core of lipoedema management. Individuals are encouraged to wear leg garments (and often arm sleeves) daily to support the lymphatic system in the movement of lymph. Patients also claim that wearing compression reduces pain levels.
Liposuction surgery is also often recommended as it is the only way to remove the diseased, fibrotic fat cells. However, this is not a treatment offered by the NHS as it is considered a cosmetic procedure. There are also some recognised inconsistencies about liposuction for lipoedema. Some patients claim that it affords them numerous pain free years however, fat growth can often return aggressively and/or in other areas of the body. Further research is required before this could be considered as a recommended treatment.
How can Nutritional Therapy help?
Many women may turn to nutritional therapy when they cannot establish why they cannot lose weight or change their distinctive body shape.
Some nutritional therapists, that are able to identify the signs/symptoms of lipoedema can inform the client on the condition and even potentially liaise with their GP to achieve referral to a specialist for diagnosis. Diagnosis is pivotal to the client. The action of the client being told that it is not their fault is a powerful therapy that will aid the client to move forward and take positive ownership of their condition.
Nutritional therapy has a significant role to play in assisting the client with:
Inflammation. Reducing inflammation has been shown to have significant impact on pain levels.
Blood glucose regulation – key to inflammation and the co-morbidity of obesity where present.
Investigation of food intolerances – many sufferers have loose connective tissue disorders, leaky gut syndrome, digestive dysbiosis. Reducing or eliminating problem foods can greatly improve pain levels and inflammation.
Hormonal regulation – due to the speculative connection with oestrogen, addressing phytoestrogens and xenoestrogens may be beneficial to the client.
As we know, fat accumulation has a complicated physiology with many factors at play. For lipoedema sufferers, fat is not a choice – it is an inevitability. It is key that these women are not managed with unconscious fat bias but instead with conscious empathy, understanding and compassion.
Me and lipoedema
I have always been big. I have big hips and legs and, more recently, many more areas have become much bigger too.
From puberty, I spent the following thirty years trying to lose my excess weight but with very little success. My weight was stubborn and I had to work so hard for every pound of weight loss, only to regain it again if I wasn't exceptionally restrictive with my diet.
On many occasions, I approached my doctors for support and guidance. I was always told that I was obese and simply needed to try harder to lose weight. I sought the advice of a private nutrition specialist, who put me on a strict diet but, as with so many times before, this also did not work. I decided to learn about nutrition for myself so I began to study for a Degree in Nutritional Therapy.
When I was only half way through my studies, a random occurrence changed my life. I had posted a photo of myself in a social media group I belonged to. It was a discussion about clothes but three women, on that day, messaged me to tell me that I looked as though I had lipoedema. I had never heard of this word before but as soon as I looked into it, everything made sense!
Fast forward to now. I have been diagnosed with advanced stage 3 lipoedema for two years now. Because my GPs didn't have any knowledge of the condition, I was diagnosed 35 yrs after I began to show signs and symptoms of the disease. This is all too common for so many women. The disease has affected my size (obviously!), my mobility and my mental health. It is a challenging condition to live with, not least because our present society values the physical attribute of slim body size far more than is healthy.
However, along with my diagnosis came a renewed sense of purpose.
I am determined to improve awareness of this condition and improve the lives of those women that have it and I take every opportunity I can to do this.
I advocate with other medical professionals, on social media and I also oversee a wonderful social media support group for this community of strong, amazing women.