Frequently Asked Questions
Where do I start?
How do I know if I have Lipoedema or not?
After you have reviewed the above links, make an appointment with your GP specifically to discuss lipoedema. As they have probably not heard of lipoedema before, we recommend that you book a double appointment and do not include any symptoms that are not related to lipoedema during this appointment. If you become a member of Lipoedema UK (membership is also available internationally) your membership pack will include a GP Information Pack, to take along to your appointment.
What’s the difference between Lipoedema and Lymphoedema?
Patients with lipoedema may be misdiagnosed as having lymphoedema. Lymphoedema results from malfunction of the lymphatic system, whereas lipoedema is thought to primarily be a disorder of adipose tissue (a lipodystrophy). Confusingly, however, patients with lipoedema may develop lymphatic dysfunction. This combination of lipoedema and secondary lymphoedema is sometimes referred to as lipolymphoedema.
I’ve spoken to my GP and they’ve never heard of Lipoedema. Where can my GP or health practitioner learn more?
If your doctor has not heard of lipoedema before, or says that you must mean lymphoedema, stay calm, it’s not your doctor’s fault if their medical school didn’t include lipoedema in their studies! Point out that the Royal College of GPs (RCGPs) has separate elearning courses on Lipoedema and Lymphoedema and that they are different conditions. Symptoms vary widely for each individual so it may be difficult for your doctor to diagnose you without taking the elearning course. The course only takes approximately 30 minutes and earns 1 CPD hour. Try to loose any excess weight that isn’t due to lipoedema, as this will make it easier to diagnose lipoedema.
Your GP and Healthcare Professional can also learn more by consulting the UK Best Practices Guidelines.
The RCGP elearning 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.
My GP has diagnosed me, what happens next?
Ask your GP to refer you to a Lymphoedema Clinic, hopefully your Clinical Commissions Group (CCG) will provide funding for lymphoedema and lipoedema. The Lymphoedema Clinic team have the expertise to assess you for compression garments and advise you on the best way to manage lipoedema. Individual patients vary enormously and so it is best to be assessed for the best treatments for you. Lymphoedema clinics have different criteria for funding, your CCG doesn’t fund their own Lymphoedema Clinic you can ask to be referred to a clinic that takes out-of-area referrals.
What do I need to know about Compression Therapies?
Compression garments encourage the flow of blood and lymph fluid within the lymphatic system which helps prevent fluid retention/oedema in the tissues and the onset of Lymphoedema. In addition, fluid within the tissues is encouraged to move towards the root of the limb, where it can be drained away more easily. Therefore wearing compression garments will hopefully stop the progression of Lipoedema into Lipo-lymphoedema. Many lipoedema patients find compression garments reduce pain and improve their mobility but it is important to be assessed by an expert in compression for lipoedema because lipoedema skin is often very sensitive.
You can read more about compression therapies on our website under Treatments.
How do I find out more about Liposuction for Lipoedema?
Liposuction for lipoedema is a very specialised form of liposuction and quite different from cosmetic surgery. We recommend that you seek out suitably qualified surgeons and consider your options very carefully. To date very few people have managed to get funding for private liposuction and most patients self fund their treatment. As most people require several operations, it can be very costly.
I am hoping to get liposuction treatment and was wondering if you have a list of recommended surgeons?
To date very few surgeons have published reports on the long-term effect of liposuction for lipoedema. As many of our members report that they have had very good results from liposuction with suitably qualified surgeons we hope that more will publish their results in the future. Liposuction surgeons are often invited to speak at Lipoedema UK conferences about their work. Please visit our pages on liposuction and our 2016 and 2017 Conferences pages for more information. *
How do I and/or my GP apply for funding to the NHS to cover Liposuction?
Funding for liposuction treatments can only be obtained through each patient’s own GP who has to complete an application on your behalf and submit it to your own local Clinical Commissioning Group (CCG).
Many Lipoedema patients are referred to St George’s Hospital Lymphoedema Clinic for diagnosis and treatment but it is important to understand that St George’s do not possess funding for Liposuction on the NHS and St Georges Hospital are not able to apply for funding for you.
I’ve been told that Manual Lymphatic Drainage (MLD) can help ease discomfort. Where can I find a practitioner?
Manaul Lymphatic Draininge is a specialist massage therapy that maximises the potential of the lymphatic system through gently rhythmic movement of the skin. Practitioners are fully trained to understand lipoedema and many people find it helps improve their symptoms. We suggest you look on the MLD UK website for information on MLD and therapists in your area, and have a chat with the ones that are a good fit for you.
Are there any social media information for women with Lipoedema?
Visit the Lipoedema UK Facebook page – our Facebook page is where we post the latest developments and information on upcoming events around the UK, specialist workshops and lifestyle tips.
Why should I join Lipoedema UK?
Lipoedema UK are a charity working on your behalf, often behind the scenes, with renowned experts and professionals to get Lipoedema recognised by ALL health care professionals so that patients can get the diagnosis and treatments they need. Our aim is to ensure that all patients receive the treatments they need through their own GP and Clinical Commissioning Group. Although we have only been a charity for 4 years and have very limited resources we have made huge strides in promoting lipoedema. With your help we can do so much more.
Become a member of Lipoedema UK and gain access to our network, including special member rates for events.
Do you have a Lipoedema helpline?
We do not have a Lipoedema helpline as we have extensive resources on our website and we run live events around the country throughout the year. Take a look at our Upcoming Events page to see when the next event near you is scheduled.
How can I help Lipoedema UK?
There are many ways to assist us – here are just a few:
- Join us and become a member. Just £25 p.a. UK membership or £35 p.a. overseas membership.
- Create, run, or join a fundraiser for Lipoedema UK. It could be as simple as a community bake/biscuit sale, or a swim relay etc.
- Become a corporate sponsor.
- Donate directly at our JustGiving Page.