Talk Lipoedema

Find out more about Lipoedema

What might lipoedema feel like?

  • The skin and tissues may feel very soft and flexible
  • The skin over the enlarged areas can also feel colder
  • Some people can feel small lumps (called lipomas) in the enlarged tissues
  • There may be pain in the affected areas, especially when pressure is applied
  • The legs (and arms) may feel heavy, tired, and aching.
What are the causes of lipoedema?

Medical science is still trying to understand lipoedema, and we do not know what triggers lipoedema to develop.  There is some good scientific evidence from recent years of the genetic and epigenetic influences on lipoedema, linked to our family history, and how our environment affects us.  These may result in alterations in the messages to oestrogen receptors on fat cells, changes to fat metabolism and breakdown, and growth of lipomas.

You might have a family history of lipoedema. There is evidence that lipoedema can run in families, whether on the maternal or paternal side. This is not always the case. In the future, it may become clear that there are different ‘types’ of lipoedema that affect people in different ways.

Some researchers have suggested that different factors such as stress, PTSD or trauma may trigger the start of lipoedema, particularly in the 12 months before the start of lipoedema symptoms. This is difficult to research, as sometimes we cannot know if the stress comes before the development of lipoedema, or due to living with lipoedema.  More research is required to better understand the links between lipoedema and stress or other mental health problems.

There also seem to be possible connections between lipoedema and other health problems, for example, hypermobility and food sensitivities.  Future research will help explain these and provide ideas for self-care.

What happens in the lipoedema tissues?

Lipoedema is a confusing word, as ‘oedema’ is usually used to describe an accumulation of fluid, whereas in lipoedema the first changes are in the fat tissue.

Research studies are going on, bring new understanding every year.   It is thought that fat cells increase, and inflammation occurs in the tissues.  The fat cells can then become damaged (sometimes called necrosis). Remodelling occurs of the fat and connective tissues leading to the fat bulges and shape changes.

Research shows increased numbers of immune cells called macrophages in lipoedema tissues, and a rise in sodium content in the tissues. These both indicate inflammation. It is thought that fat cells may become ‘hypoxic’ which means they lack oxygen.  There is also evidence that ‘adipokines’ (a type of protein) released by lipoedema tissue may play a role in sending ‘signals’ to cells and influencing changes in fat.

Does lipoedema get progressively worse?

Lipoedema does not necessarily always become worse or progress, but more research is required to answer this question. At Talk Lipoedema we provide support to many people who find that their lipoedema changes or progresses over time.   There are probably various reasons for this, sometimes linked to our general health and other health problems.  Some examples of what can make lipoedema worse are:

  • Hormonal changes that occur during pregnancy, menopause, or when someone takes birth control medications as these may influence fat tissue
  • Generalised weight gain as evidence suggests that when we gain weight, this will make the lipoedema worse, and lead to more inflammation
  • Fluid accumulation (possibly leading to lymphoedema) due to the lymphatics being overwhelmed and unable to fully drain when fat tissue expands.
  • Other medical conditions such as heart problems, blood clots, autoimmune conditions, skin infections, ‘obesity’ and osteoarthritis can complicate lipoedema
  • Medications such as steroids, some calcium-channel blocking blood pressure tablets and hormones.

We recommend that you ask your doctor to fully investigate and treat any other medical conditions, and consider what medications may be influencing your lipoedema problems.

‘Stages’ of lipoedema

Although many articles talk about the ‘stages of lipoedema’, it is unlikely that everyone will naturally progress through these stages.  Some people find that their lipoedema does not change at all over the years.

We suggest that the following system may be useful to explain the ‘stages’ but more research is required:

  • Stage 1 (mild lipoedema): there is the classic shaping, with fat deposition and disproportion between upper and lower body. Lower body is most frequently affected. Ankle shape is often lost, but feet are spared. Tissues may be sensitive to pressure.
  • Stage 2 (moderate lipoedema): fat bulges or lobes are more obvious at the knees and may influence gait. Arms and abdomen may be affected. Lipomas (small nodules) may be felt in the fat. Chronic pain may develop. Some oedema fluid may be present.
  • Stage 3 (severe lipoedema): shape changes are emphasised, fat bulges or abdominal ‘apron’ cause difficulties with walking; general weight gain has complicated lipoedema. Fluid may persist in the tissues (secondary lymphoedema), including foot swelling. Chronic pain may be more problematic.

Some people with long term severe lipoedema also develop fluid in the tissues (oedema) and this can lead to secondary lymphoedema.  It appears that the lymphatics that drain the body of excess fluid, and deal with infection, may become overwhelmed when the fat tissue expands.  Fluid then builds up in the tissues and they can become discoloured, hardened and the skin may break or leak.

What can I do to improve my lipoedema?

Can you prevent lipoedema or get rid of lipoedema?

There is no evidence that lipoedema can be prevented, or completely ‘cured’. This is similar to other conditions such as diabetes or rheumatoid arthritis.  Getting a diagnosis and accurate advice on how to self-manage the condition, is likely to prevent lipoedema becoming more complicated.

How does lipoedema affect a person?

Lipoedema affects people differently.  Some people have mild symptoms that do not affect their life, while others struggle for years with unexplained physical problems, blaming themselves for the changes in their body, and battling mental health problems.

The changes in fat tissue and development of problems, such as secondary lymphoedema, can influence walking and mobility. Pain can also have a significant effect on our lives. Many people with lipoedema talk about having to change some aspects of their home and work life, and some have had to give up or change jobs.

At Talk Lipoedema we often hear from people who find that lipoedema has greatly affected their emotional and mental health.  There are studies that show disordered eating to be 3.1 times more likely in women with lipoedema, than women of the same ages without lipoedema.  Research has shown that lipoedema can lead to anxiety, depression, social isolation and chronic pain that is both physical and mental.

Public and professional misinformation and misunderstanding around lipoedema is common. Lipoedema is often assumed to be ‘obesity’. People with lipoedema can often experience years of feeling stigmatised or ‘fat-shamed’, which influences our resilience and mental health. Through your contact with Talk Lipoedema you will see that you are not alone in having these experiences.

Getting a diagnosis and further advice

This is an important first step to realising that you are not just ‘living with fat legs’ but have a recognised health condition.  This can help you to:

  • Understand why your body has changed and realise that it is not your fault
  • Know what you can do to improve the condition, by adjusting your lifestyle, and being kind to yourself (for example, so you move away from unhelpful dieting habits.
  • Feel able to talk to others around you about lipoedema, when they may have assumed you are ‘fat’ due to other reasons
  • Get professional help with managing the condition- whether the physical or mental health problems of lipoedema.

At Talk Lipoedema we understand exactly what it is like to live with lipoedema, and how these experiences may change or improve over time.  We are here to support you.

For further information, see our Getting Help With Lipoedema section