What is Lipoedema?
Lipoedema is a chronic and progressive disorder that affects adipose tissue (fat) in ladies (very rarely affects men) and is triggered by hormonal changes in the body such as puberty, pregnancy, and menopause. The adipose tissue (fat cells) grows abnormally and progressively larger which over time will start creating a disproportionate body shape and along with that, weight gain. The cause is yet unknown, but research is still ongoing. There appears to be a genetic link and it can be found to run in families (along the female line paternal or maternal).
Lipoedema affects an average of 1 in 10 women and unfortunately is often unrecognised by Doctors and other Healthcare Professionals. It is often misdiagnosed as lymphoedema and the treatment plan provided is ineffective and incorrect. There is unfortunately a large number of cases where the Doctor has advised the patient that they are overweight or obese and often disbelieve the patient when told that they are exercising regularly and following a strict diet plan. There are occasions when all three conditions are present (Lipoedema, Lymphoedema AND a weight issue) and this makes a clear Lipoedema diagnosis or assessment more difficult.
Please visit https://www.lipoedema.co.uk, a charity organisation determined to raise awareness and recognition of this debilitating condition as well as provide support and guidance for those who suffer from it. Their information is up to date and relevant and they host weekly Zoom meetings with various guest speakers covering different topics relevant to Lipoedema. Please join them as a Member if you suffer from Lipoedema for a mere £25 per annum. This fee helps to fund their tireless campaign to raise awareness of Lipoedema within NHS and Healthcare Professionals as well as amongst the public.
LIPOEDEMA STAGES
Symptoms of Lipoedema
Lipoedema can present with the following symptoms:
- Excess weight on your legs (they feel heavy and uncomfortable)
- Your upper body and lower body are completely different sizes
- Clothes shopping is very difficult because of the odd ‘shape’ of you
- You have a small waist, with large hips and thighs
- Your feet and hands have no ‘swelling’ and are completely normal
- You have flattened arches (feet)
- You are ‘knock-knee’d
- You can lose weight from your upper body but not your hips/legs
- You bruise very easily
- You have an ankle ‘bracelet’ or ‘cuff’ or ‘cankles’
- Female members of your family (maternal and paternal) have similar shape/issues
- Cellulite on the thighs and buttocks – or a ‘peau d’orange’ look
- You exercise a lot and have a healthy diet – but still can’t lose weight on the affected areas
- You have never been able to wear ‘knee high’ boots because your calves are too big
- Your legs look like ‘columns’ or ‘pillar posts’
- You suffer swelling in feet/legs in ‘hot’ weather
Lipoedema fat can be quite painful, and it really hurts when prodded, or weight is applied i.e. a dog jumping up or someone squeezes your leg, and this is why Lipoedema is also referred to as ‘the painful fat disease’. Bruising is often found to be frequent and easily done – even the slightest knock.
Lipoedema fat feels soft, spongy, and cool to touch – unlike ‘normal’ fat. It is also common to notice lumps under the skin that feel like rice grains, or peas. These are commonly found on the inner thigh near the groin, on the back of the leg around the knee joint and in the arms near the armpit/axilla lymph nodes.
Other Conditions Often Found With Lipoedema
Lymphoedema
This is swelling that occurs when the lymphatic system does not drain the tissues adequately. There are so many reasons why this can happen (surgery, trauma, insect bites or congenital). The affected area swells up with lymphatic fluid that cannot drain away, more commonly in the lower legs (particularly amongst the more sedentary). It is normally in the later stages of Lipoedema (i.e. stage 3 or 4) that the lymphatic system becomes impaired, and you may suddenly notice you have permanent swelling in your feet and/or hands that is not caused by hot and humid weather. If you are on your feet for extended periods of time with little to no other exercise, this can also result in the development of lymphoedema in the feet and legs. In such cases, it would now be a new diagnosis/assessment of ‘Lipo-Lymphoedema.’ It is usually at this late stage you would be prescribed compression socks or tights to help manage the swelling or sent to a Lymphoedema Clinic where your symptoms would be recognised, and you would receive a diagnosis of ‘Lipoedema’ or ‘Lipo-Lymphoedema’.
Not every county in the United Kingdom has an NHS Lymphoedema Clinic, and you may have to source a private Lymphoedema/Lipoedema therapist in your area.
For example, Northampton only has a small and limited NHS Lymphoedema Clinic for non-cancer related Lymphoedema patients, which also covers Lipoedema patients. This clinic is run by a team of Vascular Nurses and Lymphoedema Specialist Nurses who are desperately trying to fill a large gap in the healthcare available for these patients in Northamptonshire. Unfortunately, it only runs for a few days every six weeks and does not accept patients with a BMI over 40, so there is a huge demand on a limited service. Because of this many are left with no choice but to source a private therapist and fund their own treatment. Privately, this would include Manual Lymphatic Drainage, measurements for compression if needed, guidelines and advice on suitable exercise or activities and why you need to do them, and guidelines and advice relating to healthy eating habits with Lipoedema in mind. A suitably qualified and trained therapist in Lipoedema Management and Care should be able to write to your GP Practice with their Assessment or Diagnosis of Lipoedema (depending on their qualifications).
There are two Private Therapist Directories I can recommend:
Lymphoedema Training Academy
https://www.lymph.org.uk/directoryoftherapists
MLD-UK
https://www.mlduk.org.uk/therapists/
Please thoroughly check your therapists training, experience, memberships, and understanding of your condition before you go ahead with any bookings and treatment plans. You are entitled to see their training certification and insurance certificates and verify them. There are many therapists out there with insufficient understanding, knowledge and training who offer Lymphatic Drainage.
Thread/spider veins
In Lipoedema the tiny blood capillaries supplying the fat cells are very fragile and are damaged easily – often resulting in easy bruising at the slightest knock or scrape. Spider veins, or thread veins are commonly found in the legs when you have Lipoedema, as well as aching or painful legs, sometimes restless legs. Wearing medical compression garments can help relieve and alleviate the painful aching legs, and restless leg syndrome, and can help prevent further venous issues from developing. You can buy compression garments online, but it would be wiser to find a therapist or clinic that can do your bespoke measurements – particularly if you find your legs or body has an awkward shape caused by the progression of lipoedema. Garments can then be ordered ‘sized’ or ‘made to measure/custom’ on prescription from your GP Practice or paid for privately.
Knees
It is common to suffer knee pain or knee issues with Lipoedema, and this would usually be given a diagnosis of osteo-arthritis. Given that the connective tissue around the knee is unusually loose with Lipoedema cases, together with the progressive increase in weight over time, the knees become stressed or fatigued and problematic. Wearing knee supports or braces can help but also can be awkward. It is worth finding suitable and safe exercise routine that will help strengthen your muscles around your knee which will help support the joint.
Obesity
Although Lipoedema ‘fat’ is quite different to normal ‘fat,’ having Lipoedema does not mean you cannot gain normal weight and become obese WITH Lipoedema. It is vital that anyone with Lipoedema maintains a healthy lifestyle as much as possible with the right foods and suitable regular exercises or activities to avoid ‘normal’ weight gain as much as possible.
NOTE: Although exercise and diet are known to have very little to no effect on areas affected by Lipoedema – it does not mean that you should stop eating a healthy diet and stop exercising - it is vitally important that you continue a healthy lifestyle to avoid rapid progression of the disease and any unnecessary ‘extra’ weight gain.
Psychologically
Lipoedema can be and is challenging to live with. Many have been misdiagnosed over the years with obesity and/or lymphoedema and told numerous times that ‘it is your fault’ because you over-eat and don’t exercise. You may have suffered for years when it comes to clothes shopping, finding something that fits your ‘odd’ shape. Socially and psychologically, living with Lipoedema can have a very debilitating impact on your mental health and wellbeing too. If you think or believe you have Lipoedema – IT IS NOT YOUR FAULT!
You are not alone and there are many women worldwide living with Lipoedema in its various stages and types.
For more information on psychological support for those living with Lipoedema please visit www.lipoedema.co.uk/psychological-support-lipoedema-patients/
Which Method of Liposuction/Surgeon Should I Choose?
And what about post-surgery Manual Lymphatic Drainage (MLD) and aftercare sessions?
Having practiced post-surgery MLD and Aftercare since 2017, I am familiar with what patients can expect and need to be prepared for.
It is vital you do your research thoroughly and choose your surgeon wisely.