Lipedema – what is it?
It is estimated that there are seventeen million women in the US alone, three and a half million women in the UK, and 350 million women worldwide, suffering from lipedema.
First off, you mustn’t feel guilty if you suffer from lipedema, (also called “painful fat syndrome”) or lipoedema as it is spelt in the UK and Europe, it isn’t your fault. It’s an incurable condition that mainly affects women, but can also, in rare cases, be found in some men, and is not caused through weight gain by overeating or poor diet.
The causes are not fully understood, but there are strong indications that it is a genetically inherited condition that can be passed on from one generation to the next, although not every generation may be affected, missing one generation but appearing in the next. It can also affect more than one member of a family but not others.
Many doctors also believe female hormones play a major role, as the condition can occur at various stages of life, mainly at the onset of puberty, but also during or after pregnancy and during the menopause.
lipedema – how does it affect weight loss?
Providing you are on a healthy weight loss diet and exercise program, lipedema won’t prevent you from losing weight, but only in certain parts of your body.
You may wonder why, regardless of all the dieting and exercise, you are only losing weight in the upper part of your body and not the hips, buttocks and legs. This is because lipedema mainly occurs in these regions, it can also occur in the upper arms.
Despite drastically reducing your daily calorie intake and increasing exercise, lipedema fat is virtually resistant to any weight loss program. But it is vital that sufferers practice a healthy diet and exercise program, as obesity, allied to lipedema, can have serious health problems and can be life-threatening.
If suffering from obesity, it is of vital importance you embrace a weight loss and exercise program to reduce your weight. If you start to lose weight over the whole of your body, that’s fine. But if it persists around the hips, buttocks, and legs, it is more than likely lipedema is the culprit, and you should seek medical advice, as the condition, without treatment, will gradually become worse.
In cases where obesity, particularly if morbidly obese, and suffering from possible lipedema, where mobility is a problem, some forms of exercise, such as running or jogging maybe out of the question.
Even though exercise will not reduce or improve lipedema, some form of exercise is necessary to help keep some level of fitness, help the flow and drainage of lymphatic fluid through your body, and avoid other health problems such as cardiovascular disease and diabetes type-2.
Many who sufferer from obesity and lipedema find swimming an excellent low-impact exercise. Other low-impact exercises that sufferers may find beneficial are aerobics Aerobics and pilates Pilates.
Although obesity may not be a problem at the moment, if you notice that you are gaining weight and an increasing amount of fat in the upper part of your body, as well as the lower part, then a change of lifestyle and diet should seriously be considered. See Dieting for Weight Loss
If you find that after a period of dieting, you are only losing weight in the upper part of your body, it is more than likely you are suffering from lipedema, and professional advice should be sought. But don’t give up on your weight loss diet and exercise program, as mentioned previously, obesity and lipedema don’t make for a happy marriage!
Some lipedema sufferers have reported worsening symptoms after eating foods containing yeast, present in many baked foods; junk and fast food, which should be avoided, even for non-sufferers; alcholic drink and some wines, red wine in particular should be avoided.
How is lipedema diagnosed?
Unfortunately, for many years, little was known about the condition, and was not recognized as an identifiable disease due to rarely being taught in medical school, and lack of training among medical practitioners.
This lack of understanding of the symptoms of lipedema led to many patients being wrongly diagnosed as being obese and told to go home and lose some weight.
In some cases obesity was part of the problem, but in others the diagnosis of obesity was based purely on excess fat only around the hips, buttocks and legs and not the upper body.
Surely this must have raised some concern as to why excess fat was only present in the lower part of the body, when obesity tends to be present in both the upper and lower body?
This misdiagnosis can lead to distress, a sense of failure, and, in some cases, physical and/or psychological harm when patients, despite their weight loss efforts, find they are only losing weight in the upper body. This can be particularly distressing for patients who are not suffering from obesity and are losing weight only where they don’t need to.
Now, fortunately, there is growing awareness in the medical profession, and among health professionals, of the need for better training and understanding of lipedema and its threat to health, helping to improve early diagnosis.
what are the symptoms of lipedema?
The most obvious symptoms that you may be suffering from lipedema are an increasing amount of fat around the hips, buttocks and legs, stopping at the ankles with no apparent changes to the upper part of the body. In some cases it can affect the upper arms.
In the early stages of lipedema the skin will probably be smooth with small amounts of fat, causing weight gain. This leads many sufferers to embark on a weight loss and exercise program, but to no avail.
As the condition gradually moves through the various stages, the fat builds up causing indentations and nodules in the skin. In the advanced stages, often referred to as Stage 4, the build up of subcutaneous adipose tissue (SAT) will probably cause large extrusions of the skin.
As the condition progresses, sufferers will, more than likely, feel increased pain and bruising, and may develop spidery or varicose veins in the legs and thighs.
what lipedema treatments are available?
Although there is no known cure for lipedema, there are a number of treatments that can help control the condition and ease the pain that may be experienced. Currently, the most effective treatment appears to be Tumescent Liposuction.
Ok, let’s take a look at some of the treatments available, and how effective they are.
- Compression Garments
Used in the early stages of lipedema, compression garments in the form of socks, stockings or tights, worn every day, can be effective in slowing down or preventing the condition becoming worse.
As well as slowing down or preventing the condition becoming worse, compression garments also help reduce pain and increase the drainage and flow of lymph fluid through the lymphatic system. This helps prevent the build of fluid in the tissues, reducing the chances of developing lymphedema, known as lipe-lymphedema, which, in many cases, can affect lipedema sufferers.
There a number of manufacturers of compression garments, many on prescription, but many lipedema sufferers, as the condition varies widely in each individual, may need to have them “made to measure”. Specialist nurses trained in lipedema and lymphedema can assess and recommend the type of compression garment needed by each individual.
- Manual Lymphatic Drainage (MLD)
MLD is a type of skin massage, often used in conjunction with compression garments, on patients suffering from lymphedema, but many lipedema sufferers claim it also reduces pain and eases the discomfort of the condition.
MLD is practiced by trained therapists who, by using a combination of gentle massage techniques, improve lymphatic flow and move lymph fluid away from infected areas and into an area that drains the fluid, reducing edema and the build up of fluid in the limbs.
- Tumescent Lymph-Sparing Liposuction
As mentioned earlier, tumescent liposuction currently appears to be the most effective treatment for lipedema, reducing the pain and size of the affected area. Unfortunately, it may not be suitable for every sufferer.
If you feel you may be suffering from lipedema it is important to consult your medical practitioner, who may, in all probability, refer you to a specialist clinic where further tests and suitability for tumescent liposuction will be carried out.
It is also important that tumescent liposuction is only carried out by surgeons who have been trained in, and have expert knowledge of, lipedema, lymphedema and the lymphatic system.
So, what are the advantages of tumescent liposuction over the traditional “dry” liposuction?
- Tumescent Liposuction, when carried out by surgeons, experts in lipedema surgery, is less likely to damage the lymphatic system than traditional “dry” liposuction.
In the past, some cosmetic surgeons, maybe not aware that the patient was suffering from lipedema, used traditional liposuction under general anesthetic with disastrous results, including damage to the lymphatic system, often resulting in secondary lymphodema, which the patient didn’t suffer with before undergoing surgery.
Traditional liposuction, along with lipectomy (cutting away the fat), not only removes fat but also lymph vessels, which can result in the onset of lymphodema. Both these procedures, now discredited, have been tried on lipedema sufferers with some very poor and damaging results.
- While the cost of Tumescent liposuction is expensive, it is less expensive than traditional liposuction as a local, rather than general, anesthetic is used, so the attendance of an anesthetist is not needed.
Normally the surgery is performed under local anesthesia unless large areas of fat are being removed, where general anesthesia may be necessary.
The main benefit of local over general anesthesia is that the patient normally doesn’t require an overnight stay and is awake during surgery. This benefits both the patient and the surgeon, who can ask the patient to flex or tighten muscles, making it easier to remove fat from otherwise difficult areas.
As the patient is less likely to suffer a long recovery period, side effects and nausea that often occur following general anesthesia, they are able to move around soon after surgery.
A major benefit of tumescent liposuction is that the anesthetic is only injected into specific targeted areas of fat. This results in less bleeding and bruising, unlike traditional liposuction, and many patients experience a speedy recovery and less pain.
By using a smaller cannula than traditional liposuction, the removal of fat is controlled, making it safer, and, in the majority of patients, a much smoother looking result.
- Cost is probably the main disadvantage of tumescent liposuction, with prices ranging from around £2,000 – £8,000 in the UK, with an average of around £4,000.
In the US, it is around $1,900 – $9,000, with an average of between $5,000 – $6,000. These prices are only a guide, and can vary according to a person’s size, the number of areas to be treated, and underlying health problems that may need to be addressed prior to surgery.
Unfortunately, it is unlikely that private health insurance will fund the cost of liposuction, classing it as purely cosmetic for aesthetic reasons, although with lipedema sufferers this is not the case.
If you are covered by private health insurance, it may be worthwhile asking if your medical practitioner would write to them explaining that this is not for aesthetic reasons but for health reasons, and that many lipodema sufferers develop lymphedema, which can be life threatening. Who knows, you may get lucky!
In the UK, the NHS does not fund liposuction, again treating it as purely for aesthetic reasons rather than health. Don’t despair, all is not lost! The Clinical Commission Group (CCG) may be able to help with funding.
Funding for liposuction should be made through your GP, who will refer you to your CCG lymphedema clinic where you will be assessed as to your suitability for liposuction and eligibility for funding. If suitable for surgery, funding is often granted.
- As with any surgery, there can be risks, but providing it is done by doctors experienced in treating lipedema and liposuction procedures, the risks are minimal.
Although the risks associated with liposuction are minimal, they can increase with the amount of surgery required, the number or size of the areas to be treated. Some of the more common side effects include:
- Loose skin which may appear wrinkled or rippled. This is not unusual and will tighten or retract after a period of time.
- Numbness may be felt around the treated area, with some bruising, swelling and soreness when touched. This is only temporary and will gradually disappear.
- Some minor scarring and irritation may be experienced where the cannulas were inserted. Again, this is only temporary and will disappear in time.
There are some less common side effects, but these are more likely to occur after general anesthesia.
That’s some of the advantages tumescent liposuction has over traditional liposuction, especially when treating lipodema sufferers. But what are the disadvantages?
That’s the pros and cons of tumescent liposuction. What are the alternatives to tumescent liposuction?
- Tumescent Water-Jet Assisted Lymph-Sparing Liposuction
As the name implies, a slightly pressurized jet of saline water is injected into the affected areas to gently loosen fat before removal.
Many surgeons, experts in lipedema surgery, are now recommending and using this method, saying it is safer, with a quick recovery time, less side effects, and excellent long-term results.
Procedures for lipedema liposuction
Ok, you’ve visited your medical practitioner and lipedema has been diagnosed. So, what happens now?
Unless your doctor has recommended a clinic that specializes in lymphoodema and lipedema surgery, you need to do some research yourself.
If you live in the UK, and want to apply for liposuction funding you will need to consult your doctor, who will refer you to your local CCG clinic where you will be assessed as to suitability for liposuction and eligibility for funding.
Make a list of lipedema clinics in your area, or within reasonable distance of your home. Visiting their websites, will give you some idea of what’s on offer.
Once you have decided on a clinic, or clinics, contact them, or better still if possible, make an appointment to visit them, where you can view the facilities first-hand.
Ask questions: How long have they been established, the number of operations carried out, and their success rate? Are the surgeons fully trained and experts in lipedema surgery? What type of liposuction will be used? Do they offer pre- and post-operative care? Do they have testimonials from patients including before and after pictures?
Reputable clinics will answer these questions honestly and truthfully, it’s not worth their reputation to do otherwise. Now the final question: Depending on the size of the areas to be treated and amount of surgery needed, how much will it cost me?
You’ve made your choice, and the surgeon may have advised you what type of liposuction is most suitable for you. Now you will undergo a comprehensive medical as to your suitability for surgery.
If you are found suitable, a date will be given for surgery and a program of pre-operative care. It is essential that you carry out this program, as failure to do so may result in the surgeon refusing to do the surgery.
Not everybody is suitable for liposuction. Applicants with some underlying health problems may be refused surgery, especially in cases where general, rather than local, anesthesia may be needed. The surgeon may decide that the risk of complications, both during and after surgery, is too great.
Patients suffering from obesity, as well as lipedema, may also have their surgery delayed and advised to lose weight before surgery can be undertaken. Only when the surgeon is satisfied that the patient has lost sufficient weight will surgery be performed.
- Tumescent Lymph-Sparing Liposuction Procedure
The date for surgery has arrived. Usually, standard pre-op is the first of the procedures you will undergo.
This normally involves the surgeon administering a skin cleansing solution, and maybe antibiotic and mild anti-anxiety medication.
The next stage involves the surgeon injecting tumescent fluid under the skin causing the skin to become swollen and smooth, known as the tumescent effect.
This fluid contains an anesthetic (lidocaine), a saline solution, and epinephrine (also known as adrenaline), to shrink blood vessels and reduce bleeding.
After injecting the fluid the surgeon waits until the effects of the tumescent fluid have fully taken affect. Once happy that all areas to be treated are fully anesthetized, the actual surgery begins.
Small vibrating microcannula mini tubes are then inserted into small incisions that have been made in the areas to be treated, taking care to avoid lymph and blood systems wherever possible.
Once inserted, the vibrating microcannula gradually separates fat cells from other parts of the affected areas. A vacuum in the tube now sucks out the loosened fat.
When all loose fat has been sucked out, the microcannula will be extracted, and, normally, the small incisions are left open to drain off any excess fluid, and absorbent bandages applied to soak up any excess fluid.
The patient, under observation, is left to recover. When the surgeon is satisfied that recovery is complete, with no sign of complications, the patient is allowed to return home.
- Water-jet Assisted Lymph-Sparing Liposuction Procedure (WAL)
The procedures for WAL are very similar to tumescent liposuction apart from the method of removing fat cells.
Where tumescent liposuction uses vibrating microcannula to loosen fat cells, WAL uses a low-pressurized jet of saline solution. Loose fat cells are then sucked out through the microcannula.
Although there are other liposuction methods, many surgeons now use WAL, believing, at the moment, that it is the safest and most efficient way of performing liposuction.
They say that there is less damage to the surrounding tissue and lymphatic system than other methods, less bleeding and bruising, and a faster recovery time for patients.
Regardless of which liposuction procedure is used, it is important that you follow the post-operative care the surgeon and his team will devise for you to ensure success over the long-term.
That’s about it. I hope this post has given you some idea of the symptoms of lipedema, as opposed to obesity, and the various treatments and liposuction procedures that can help control the disease.
The content of the above post is for information only, and not intended to advise or to recommend. If you feel you may be suffering health problems, whatever they may be, it is important you consult your medical practitioner or health professional before starting on any weight loss or exercise program. Taking self-administered treatment without professional advice may lead to irreparable to your health.