Getting a diagnosis and specialist support
Obtaining a Lipoedema diagnosis can be a daunting experience. Despite being a condition that often begins around puberty, many people are not diagnosed until later in life. Research studies suggest that Lipoedema is poorly recognised and often misdiagnosed as a weight issue or lymphoedema. However, an early diagnosis is crucial for effective symptom management and it can empower individuals to introduce lifestyle changes that make a positive impact to overall health and well-being.
How can I get a diagnosis of Lipoedema?
Lipoedema UK has helped thousands of women get a diagnosis – one of our aims is to improve access to earlier diagnosis, treatment and ongoing support on the NHS.
It is important to obtain an early diagnosis of Lipoedema. This will start the process of finding the most effective way to manage symptoms. [add link back to Symptoms]
Are you waiting for a diagnosis? You are not alone.
A survey by Lipoedema UK (2021) [HYPERLINK TO SURVEY] highlighted that 57% of respondents experienced symptoms around puberty but only 2% received a diagnosis. A massive 62% of respondents stated they didn’t receive a diagnosis until later in life (between 41 and 80 years of age). Lipoedema UK is working to change this statistic through greater awareness, campaigning, training and research.
Getting a diagnosis
Should I talk to a GP if I think I have Lipoedema?
If you are concerned that you may have Lipoedema, book an appointment with your General Practitioner (GP) or family doctor. There are a number of reasons for your symptoms and your GP will be able to undertake an assessment, and may refer you to a specialist service.
Prior to booking an appointment to see your GP, it is helpful to gather as much information as possible. Check out our information leaflets. Membership to Lipoedema UK includes a GP information pack, a collection of information for members can take with them to their appointment.
Visiting your GP
If you are concerned that you or someone you know has Lipoedema, it is important to see a GP. To ensure there is adequate time to discuss your symptoms and medical history, we suggest booking a double appointment. An early diagnosis of Lipoedema can help the person and their family, friends and colleagues understand the condition and why the changes in their body are happening, plus what can be done to help manage symptoms. Receiving a diagnosis can empower individuals to make changes to their lifestyle, health and well-being, which in turn can help manage symptoms and concerns. A referral to a specialist service may also be helpful in offering further support and treatment.
Royal College of General Practitioners (RCGP) e-learning course
Lipoedema UK have partnered with the RCGPs to produce an e-learning course on Lipoedema. This course is free for members of the RCGP. Non-members can enrol for the course online, which costs £25, at [insert link plus logo for course].
Useful tips before seeking a diagnosis
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Keep a diary of your symptoms and the reasons why you think you may have Lipoedema.
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List your symptoms and recall the approximate age these started. Have they worsened? Be specific – how did you feel when your symptoms first started? [Hyperlink to symptoms]
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Think about how your symptoms affect you – your work, family, socialising, sleep, energy levels, problems with clothing, mobility or mental health, for example. Consider all aspects of your well-being (physical, mental, psychological and social).
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Consider how your symptoms affect your daily activities and quality of life. Have you had to stop doing things you enjoyed because of your symptoms, and do they impact on your ability to do your job or care for your family?
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Is there a family history of similar symptoms?
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Do you have pain in the areas affected?
What to expect from your GP
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Your GP will listen and discuss your current symptoms, the onset of the symptoms and how they affect daily life.
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Your GP will need to undertake an examination as part of the assessment and differential diagnosis. Requesting a longer (or double) appointment will provide more time to discuss issues and concerns, especially if your GP has not heard of Lipoedema before.
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There are currently no diagnostic tools or tests for Lipoedema, so identifying the condition can be challenging and relies on clinical assessment, including history taking, examination and ruling out other conditions.
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Lipoedema UK has developed a differential diagnosis leaflet [add link here] and this may be helpful to take to your appointment, along with other information included in our membership pack.
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Your GP may decide to carry out other investigations (such as a blood test, or radiology investigations such as an X-ray or scan) to rule out alternative causes for symptoms.
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It is important to obtain an early diagnosis in order to be able to discuss treatment options that can help you to better manage symptoms and conditions.
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There are no stand-alone specialist Lipoedema clinics on the NHS. It is likely that, if diagnosed, you will be referred to a local lymphoedema clinic, to help support the management of Lipoedema symptoms. [link ‘Living with lipoedema and treatments’] However, not all lymphoedema clinics are able to see Lipoedema patients. In this case, an ‘out of area’ lymphoedema service referral may be considered.
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If a multi-disciplinary approach is required, referrals to other services are also likely.
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Referral to other services will be unique to each individual as Lipoedema will affect everyone differently and other co-existing conditions may need to be considered.
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Examples of other referrals that may be required are weight-management services, vascular services, endocrinology, psychology/counselling/mental health services, physiotherapy or occupational health team.
Information for GPs and Healthcare Professionals
Learn more by consulting the UK Best Practices Guidelines and NHS pages https://www.nhs.uk/conditions/lipoedema/
The RCGPs e-learning course is available for all other healthcare professionals such as your practice nurse, so encourage them to take the course too. Find out more at RCGP Learning.
Referral to a specialist Lymphoedema Clinic
“Finding Lipoedema UK
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Individuals with Lipoedema may be referred by their GP to a local lymphoedema clinic as there are no specialist Lipoedema clinics in the NHS. It is important to be assessed and treated with appropriate non-surgical treatments, such as appropriate compression garments and advice. Your GP can also refer you to other services if appropriate, such as weight management or psychological services. The GP may refer you to the practice nurse to measure and fit you for compression, but this is dependent on what training and skills the practice nurse has in this area.
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 many parts of the UK have no provision at all. A number of lymphoedema clinics accept out-of-area and private patients for diagnosis and treatment.
Private Clinics: There are some private clinicians and services that may be able to diagnose and offer advice and support, such as measuring for compression. Some clinicians are also qualified in manual lymphatic drainage (MLD) and other therapies which may relieve some of the symptoms of Lipoedema.