Many people with lipoedema find it difficult and embarrassing to discuss their symptoms with their doctor, but as Lipoedema is often a progressive condition it is important to obtain an early diagnoses so GPs and patients can work together to prevent symptoms getting any worse.
Symptoms are often mis-diagnosed for lymphoedema or obesity and if left undiagnosed lipoedema can develop into lipo-lymphoedema.
A number of factors are taken into consideration when making a diagnosis of Lipoedema:
- Disproportionately larger/fatter legs and hips compared to the upper body
- Swelling is symmetrical (both sides of the body are affected equally)
- Hands and feet are not affected
- Loose, floppy connective tissues around the knee joints
- Fat that looks like cellulite and feels soft
- Tenderness/pain and easy or spontaneous bruising to affected areas
- Skin of affected areas may be pale and cold
- Upper arms may also be disproportionately fatter
- Patients may report increased swelling in hot weather
The Royal College of General Practitioners (RCGP) in partnership with Lipoedema UK have developed an elearning course for the diagnosis and management of Lipoedema.
Lipoedema UK’s Big Survey 2014 revealed that only 5% of doctors were aware of Lipoedema. Most women reported on the frustration of decades of describing their symptoms to numerous health care professionals only to have their concerns brushed aside. This led to a failure to obtain an early diagnosis and lost opportunity to obtain advice and treatment in the early stages. Consistent lack of diagnosis can also lead to emotional problems and loss of self-esteem, especially as it was often inferred that the patient’s lifestyle may have caused Lipoedema.
Edited by Dr Dirk Pilat, contributors to the course include the UK’s leading expert on Lipoedema Professor Peter Mortimer, Dr Sarah Pledger, Lipoedema UK’s Suzanne Evans, Sharie Fetzer and Nurse Consultants Chris Wise and Denise Hardy.
Lipoedema UK Membership pack includes a GP Information pack for anyone who feels they have the symptoms of Lipoedema but are unsure how to approach their GP. We provide a letter addressed to your GP informing them of the elearning course and explaining why it is important to obtain a diagnosis.The course has also been endorsed by the Royal College of Nurses.
This course is free for members of the Royal College of General Practitioners but will cost non members £25.
To view the course: click here
Ideally all patients with lipoedema should be referred by their General Practitioner (GP) to a local lymphoedema clinic where they can be assessed and treated with appropriate conservative treatments such as compression garments and advice on diet, lifestyles and suitable exercises.
The British Lymphology Society BLS hold a list of UK Lymphoedema Clinics but not all accept patients with lipoedema. UK Lymphoedema services are inconsistent and a post-code lottery, as a considerable number of CCG areas have no provision at all. A growing number of lymphoedema clinics accept out of area and private patients for diagnosis and treatment.
List of UK Lymphoedema Clinics
Our sister charity the Lymphoedema Support Network maintains the most up to date list of clinics in each area.
Tertiary Referral Clinics
St Georges Hospital Trust, Wandsworth, London
Patients cannot self refer to Georges Hospital’s Lymphoedema Clinic.
The clinic provides a routine NHS service for adults and children in Wandsworth, London suffering from lymphoedema and chronic oedema of all types. In addition the clinic treats patients with lipoedema, lipo-lymphoedema and related conditions. Patients are offered appropriate investigations and advice on treatment.
St. George’s Hospital do not have direct access to funding for liposuction. Funding requests for liposuction should be made by a patient’s GP to their own to Clinical Commissioning Group (CCG) on an individual basis. This is a lengthy process with no guarantee at this time, that funding will be approved by the patient’s CCG.
To access the specialist lymphoedema services of Georges Hospital, from outside Wandsworth, a referral letter is required and must come from a hospital consultant. The clinic will not accept direct referrals from a patient’s GP. The best route is to consult your own GP for advice on referrals in your area.
If a St Georges consultant sees a patient on a private basis, they can only treated at St Georges within the NHS service on a private basis; the patient cannot be offered an NHS appointment. The only exceptions to the above are:
1. GPs within Wandsworth CCG can refer directly into the service.
2. Non-private Lymphoedema Clinics can refer directly into the service.
Newly referred patients are offered appointments within the Government’s Waiting List initiative.
Posted Referrals should be addressed to: Dr Kristiana Gordon, Lymphoedema Department, Dermatology, St George’s Hospital, Blackshaw Road, London, SW17 0QT.
University Hospitals of Derby & Burton
Clinics are held at Florence Nightingale Community Hospital (Derby), Long Eaton Health Centre (Nottingham) and Kings Mill Hospital (Mansfield).
The best contact number to use for referral enquires is: 07385 954895.
Genetic Research into Lipoedema
Researchers at St Georges Hospital and University Hospitals of Derby and Burton are currently analysing the results of the patients recruited to their critical gene identification research into lipoedema. To date there are no conclusive results and for an update on their progress visit our section on Research.