Phone: +44 (0) 7812 594834

Email: laura.couse@kirkystherapies.co.uk

Hardingstone, Northampton

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.

How to Recognise Lipoedema

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

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’.

Click here for more information regarding Compression Garments.

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 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 which would be ordered on prescription, 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.

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.

Click here for more information regarding Compression Garments.

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.

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.

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/

Getting a Diagnosis!

This can be very difficult, unfortunately. Currently, most Doctors, or General Practitioners (GP’s) do not understand Lipoedema or have never heard of it. It is very helpful to approach your Doctor ‘armed’ with a letter from Lipoedema UK (for those in the UK) – but where do you go to from there?

A referral to a Lipoedema specialist (such as Professor Vaughn Keely, Dr Kristiana Gordon) can take over six months and sometimes much longer. You can ask to be referred to a Lymphoedema Clinic, as most lymphoedema nurses know and understand Lipoedema and can give you a diagnosis, or you can find a private Lymphoedema/Lipoedema therapist nearby who is registered with MLD-UK or Lymphoedema Training Academy UK or who has the relevant training and certification. You may also find an Independent Lymphoedema Specialist Nurse who can offer you a private Clinical Diagnosis.

As I have not had the relevant medical background training in Nursing, I am only able to offer a Clinical Assessment with a letter to your GP Practice. This is usually accepted and recognised, however if your GP insists on a Medical Diagnosis, please let me know as I am normally able to arrange for an Independent Lymphoedema Specialist Nurse to visit Northampton once or twice a year for this purpose alone.

And then what?

When you find out you have Lipoedema it can be both a relief (it is NOT your fault) and a curse (it is a progressive and chronic condition with no known cure to date). So many women are still advised by medical health professionals that they need to lose weight, go on diet, exercise more and of course, believed to be lying when they say that they ARE exercising regularly and eating healthily. This has so often led to eating disorders, depression, and in some cases malnutrition.

It is a lot to take in, digest and process. Taking control of your life and managing your condition is now of paramount importance. Anti-inflammatory and low carbohydrate foods are important to help slow the progression of Lipoedema along with regular exercise or physical activity.

For later stages where mobility has become impaired, swimming is excellent, but this can also be difficult if you are particularly conscious of your body image. Walking or chair yoga is also excellent in this case. Good skincare is also important – keeping your skin well moisturised and nourished, and clean – particularly in the hot weather where sweat can get trapped and cause irritation. Regular lymphatic drainage sessions can help with some cases – it is worth trying it out to see if it helps you. Compression can help too – speak to your Lymphoedema Clinic or your Lymphoedema/Lipoedema Therapist.

The Surgical Option

Gastric bands are NOT always helpful for Lipoedema – this surgery is for people who are overweight from normal obesity and diet restriction will help them – but it may not help you. Do your research thoroughly.

Liposuction, tummy tucks and arm or thigh lifts for Lipoedema can be life changing. There are always risks in surgery, and fatty tissue is known to be very problematic in healing after surgery therefore you may meet this block with most surgeons. It is therefore important to find a surgeon who is familiar with Lipoedema (and can prove it). They will understand the condition and approach surgery for you differently. A Lipoedema aware surgeon should also be able to understand that BMI calculations should not be used to decide if you can or cannot have the surgery.

Liposuction, arm or thigh lifts and tummy tuck surgery for Lipoedema patients is not yet available on the NHS as it is still considered to be cosmetic. Many ladies go abroad for this surgery to Turkey and other countries worldwide. Please be very careful and investigate the surgeon of your choice thoroughly – if they say they are aware of Lipoedema be sure that they are.

It is worth seeing a few surgeons for consultations in the UK before deciding on any surgery abroad and in this case I would highly recommend you start your research by booking in a few consultations (at least three different surgeons to give you a broader and more solid understanding of what you will be going through):

Dr Dennis Wolf
(drwolf.com/lipoedema-treatment/)
(theprivateclinic.co.uk/surgeon-doctors/dr-dennis-wolf/)
He is available both privately, and with The Private Clinic (where you can obtain finance for your surgery). His consultations and surgery are conducted in London. I have seen a large number of Dr Wolf’s patients for post-surgery MLD and Aftercare and he is highly recommended. Dr Wolf also offers his time to therapists registered with MLD-UK for up-to-date guidance regarding treatment of post-surgery recovery.

Dr Michael Mouzakis
(theprivateclinic.co.uk/surgeon-doctors/mr-michael-mouzakis/)
He is available through The Private Clinic and offers consultations in Northampton. Surgery is in London.
I have seen a number of his patients for post-surgery MLD and Aftercare and he is also highly recommended for early-stage Lipoedema surgery. I have been told that he is empathetic and understanding.

Dr Puneet Gupta
(hunarclinic.co.uk/dr-puneet-gupta)
I have only seen one of Dr Gupta’s patients post liposuction and the feedback was good. The information on his website is informative and given his understanding of Lipoedema, is worth booking a consultation with.

The Karri Clinic
(thekarriclinic.co.uk/lipoedema-treatment/)
Dr Vasu Karri is not a surgeon I am familiar with. His website is informative and given his understanding of Lipoedema, is worth booking a consultation with.

There are Lipoedema Surgeons abroad too:

Lipemedical – Madrid, Spain
(lipemedical.com)
This clinic operates specifically with and for Lipoedema patients. They require you to wear class 2 compression garments at least two months prior to your surgery. If you choose to go here, please ensure you have your compression garments sourced and ordered well in time (about one month before you need to actually start wearing them).

Click here for more information regarding Compression Garments.

Dr Iakovos Georgiou – Cyprus, Greece
(driakovosgeorgiou.com
Dr Georgiou, is reported to treat his patients very well and is very approachable and empathetic. He also requires Class 2 compression to be worn at least two months prior to the surgery.

Click here for more information regarding Compression Garments.

Visit Lipoedema-UK (lipoedema.co.uk) to request or source a list of Surgeons specifically for lipoedema surgery, i.e. Dr Ghods, who is a well known surgeon specialising in Lipoedema surgery and who also insists his patients wear Class 2 compression two months prior to surgery.
Click Here for more information on compression garments pre and post-surgery.

Why is MLD recommended? - Dr Dennis Wolf

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.