Read about many women’s experiences with Lipoedema, their struggles with misdiagnosis and their mission to make a change.
Do You Experience The Following Symptoms?
Excess weight on your legs
Heaviness and discomfort of the legs
Your upper body and lower body are completely different sizes making clothes shopping very difficult
You have a small waist, but large hips and thighs
Your excess weight does not include your feet or hands
You can lose weight from your upper body but not your lower
Your lower body bruises easily
Some members of your family are or were a similar shape
You may have a medical condition called Lipoedema
Lipoedema (also spelt Lipedema in the USA), is a chronic condition that makes you accumulate fat below the waist, often giving you hips, buttocks and legs that are out of proportion with your upper body. It can also affect your arms.
78% of women with Lipoedema who took part in Lipoedema UK Big Survey 2014 developed symptoms between the ages of 18-25 but only 7% received a diagnosis at that time. Most took decades to realise they had Lipoedema as they were constantly dismissed by the medical profession and told that the excess fat ‘was their own fault’.
No one knows exactly how many women have lipoedema but as the vast majority of doctors and nurses aren’t trained to recognise lipoedema, many women go their whole lives without obtaining a diagnosis.
What do I do if I think I have Lipoedema?
Obtaining a diagnosis is an important first step to working with your GP for support and the resources you need to keep lipoedema under control.
Many women with Lipoedema lead full and active lives, but it can also lead to a lack of confidence, reduction in mobility and become very debilitating.
Eating a well balanced diet to avoid putting on unnecessary weight is an important part in managing lipoedema. Avoiding carbs, processed foods and artificial additives helps many people with Lipoedema keep their weight under control.
Keeping fit and mobile is essential. Choose low impact exercises such as walking, swimming, cycling or stretching and keeping fit at home to tone and strengthen muscles. Avoid putting excess pressure on your knees and legs and sitting still for long periods at a desk or in front of the TV.
We recommend that you make an appointment with your GP, and prepare for your appointment by listing your symptoms and the affect they have on your life. You may find it useful to take along photos of how it has developed over the years along with photos of other members of your family who may or may not have lipoedema.
Made to measure compression garments are often advised for patients with advanced lipoedema – but it is essential that they are prescribed by a practice nurse or health care pratitioner familiar with the differences between lymphoedema and lipoedema. Off the shelf compression garments are usually only suitable for early stage lipoedema.
As most GPs and practice nurses are currently unaware of Lipoedema, it is advisable to take along information on the Royal College of GPs e learning course on lipoedema.
Lipoedema UK support our members to work with their GPs and healthcare professionals to find treatments available in their area.
Lipoedema UK’s events and newsletters provide our members with the latest information from internationally renowned specialists, surgeons and researchers as well as practical advice and inspiration on exercise.
Our member’s events are a great way to meet people who understand the challenges of lipoedema and find friendship and support.
Lipoedema UK’s team of Nurse Consultant Advisors are experts in managing Lipoedema and prescribing compression garments.
Lipoedema UK work with St Georges Hospital, London and Royal Derby Hospital, Nottingham on their genetic research project.
Lipoedema UK initiates our own patient research and co-operate with the Lipedema Foundation and Lipedema Project in the US and other organisations on their research projects.