Thicc Not Sick video

Just had to share this. Excellent work, Kristen Bartlett and Ashley Nicole Black! You hit all the top points we've been making for years, with humor and no holds barred. Great job! And thank you Samantha Bee for bringing their work forward to a national platform.

*Warning: Salty language and off-color humor, if you prefer to avoid that sort of thing

Eighth Annual Turkey Awards: Weight Bias in Lipedema Care

Image by Robert Burton, U.S. Fish and Wildlife Service

It's long past time for our annual Turkey Awards, so let's get this turkey launched! This year is our Eighth Annual Turkey Awards

The Turkey Awards are the "prizes" I hand out to highlight fat-phobic treatment of people of size from care providers, biased attitudes or studies from researchers, or troubling trends in the care of fat pregnant women these days.

In past years, we've talked about:

• fat-phobic care providers
• scare-mongering and shaming tacticss
• jumping to conclusions about risks
• scorched earth tactics
• prenatal weight gain extremism
• fat-phobic attitudes around treatment of PolyCystic Ovarian Syndrome(PCOS)
• astronomically high cesarean rates in women of size

This year it's time to focus on weight bias in the treatment of lipedema (also spelled lipoedema).

The Lipedema Series

Lipedema is an adipose tissue disorder sometimes known as "painful fat syndrome" or "big leg syndrome." In lipedema, an abnormal accumulation of fat occurs in the legs and lower body (and often arms as well). It tends to worsen around times of hormonal change, as one press release notes:

ATDs [Adipose Tissue Disorders] involve growth and retention of fatty tissue, which often starts at key life shifts in the body’s metabolism, such as puberty, pregnancy or menopause. 

The fat cells in lipedema behave abnormally, growing beyond normal size, pressing onto nearby structures like the lymph system. This causes blood and lymph fluids to leak into the system, affecting joints and lymph circulation. Over time these abnormal fat cells can go from simply causing a pear-shaped body to interfering with mobility and causing secondary lymphedema (also called lipo-lymphedema). This can strongly impact the person's health and quality of life.

Many people of size, especially "morbidly obese" and "super obese" people, have lipedema and don't know it. It explains why some fat people have great difficulty losing weight, even when being very strict with diet and exercise. It also explains why lymphedema issues are more common in very high BMI women.

I ran a major series of posts on lipedema last year. Here is what we have covered so far:

• Part One - Typical features of lipedema, how to differentiate between lipedema and lymphedema, and what lipo-lymphedema is
• Part Two - How lipedema progresses, the different stages of progression, and why it's so important to be aware of lipedema
• Part Three - Types of fat distribution patterns, pictures illustrating type and stage of lipedema, how lipedema is diagnosed
• Part Four - Possible causes of lipedema, medical conditions often associated with it
• Part Five - Possible treatments for lipedema, broken down into several sub-posts
•     5A- Traditional Medicine Treatments
•     5B - "Weight Control" and Special Nutritional Approaches (trigger warning)
•     5C - Tumescent Liposuction
•     5D - Alternative Medicine Treatments 
•     5E - Summary of Treatment Options
• Part Six - Coping with clothing challenges

Today, we talk about why this common condition (perhaps affecting up to 11% of women) is so under-diagnosed, and how the care of lipedema is impacted by weight bias in the medical community.

Lack of Medical Awareness

One of the most difficult challenges of lipedema is just getting diagnosed, let alone receiving adequate treatment. As one resource notes:

This frustrating genetic disorder of fatty deposition is not particularly rare, but is rarely diagnosed because clinicians fail to recognize it.

The biggest barrier to diagnosis is that most care providers do not know about lipedema. 

Care providers can't diagnose or treat something they don't know exists. But if this diagnosis has been around for 75 years, why are so many doctors still ignorant about this condition?

It's probably due to a combination of weight bias and practical barriers. Let's talk about these factors. 

Institutional and Personal Weight Bias

It has been estimated by lipedema experts that about 97% of care providers in the U.S. do not know anything about lipedema. How can that be?

One of the most critical questions is why medical schools aren't teaching about this disorder when it's been known about for 75 years.

Sure, lipedema is just one of many conditions that have been discovered in recent years, and medical schools only have so much time to cover many important conditions. That is a real issue. However, the main reason that this condition hasn't made it into most medical school curricula is underlying institutional weight bias.

Generations of doctors have been trained that obesity is always due to overeating and under-exercising, minus a few extremely rare genetic conditions. The medical world is very invested in this world view, both financially and emotionally, and is extremely resistant to even the mere suggestion of any other possibility. As one leading lipedema doctor notes:

People with fat disorders have excess fat, or fatty tissue, on their bodies that cannot be lost by lifestyle changes...It’s pretty difficult for the medical community to accept that fact.

Emotionally, many doctors simply don't want to hear about alternate explanations for obesity. Like the rest of society, they want simple, black-and-white views with easy answers that put the responsibility on the person's behavior. It's far easier to blame the victims than to question everything they've been taught to believe.

And of course, financially many doctors are deeply invested in the obesity treatment industry through connections to companies that specialize in weight-loss plans, pharmaceuticals, and surgeries. This thoroughly compromises their objectivity, consciously or unconsciously.

Some doctors have so much personal weight bias that they continue to deny that this condition exists, even when presented with research about it from prestigious medical journals. They think patients are making up a condition to hide a lack of self-discipline. They believe all our health issues are just from being fat, and that we are simply in denial or making excuses for overindulgence and laziness.

Weight bias is deeply embedded into medical culture. This is a major reason why lipedema has been so neglected as a field of study and as a diagnosis, despite its discovery many years ago. 

Weight bias in the medical field, both institutional and personal, remains one of the most significant barriers to improving the care of people with lipedema.

Practical Barriers

There are also practical barriers to more awareness of lipedema.

One major problem is that lipedema has no ICD (International Classification of Disease) diagnostic code.

If this condition has been known about for seventy-five years, why hasn't a diagnostic code been assigned in all that time?  Not having an ICD code makes it easy for biased caregivers to claim that lipedema is not a "real" condition.

The good news is that lipedema finally has been assigned a MeSH (Medical Subject Heading) search term on PubMed, and you can now search for and find studies on lipedema/lipoedema in the medical literature. In addition, the National Health Service in the U.K. and other medical groups accept it as a real condition. This indicates medical acceptance of lipedema is increasing. 

An ICD code for lipedema is under review, but it still has not been approved yet; weight bias has undoubtedly impeded this process. This is a critical issue, because without an ICD code, it is difficult for caregivers to officially diagnose the condition or to receive compensation for treating it. Insurance routinely denies treatments for people with lipedema, who must then either pay out of pocket or forgo treatment. Getting the ICD code approved is the first and most critical step towards better recognition and treatment of lipedema. 

Another practical barrier is that lipedema doesn't really fall under any particular medical subspecialty. As one recent Canadian article points out, that means that no particular group is promoting awareness of this condition, and very few are researching it or working on adequate treatment:

"No subspecialty has taken it on as something they're going to spearhead," said Dr. Adam Power, a vascular surgeon at London Health Sciences Centre, who sees patients with the condition. "There are few physicians who know about it."

Of the leading lipedema doctors in the world, some are endocrinologists, some are plastic surgeons, some are vascular surgeons, and a few are internists or dermatologists. This makes it difficult for even the lipedema specialists to collaborate, and the lack of centralized information makes it very hard for the average doctor to know how to treat lipedema or make referrals for it.

Although there is no officially-recognized subspecialty on lymphology, doctors who treat lymphedema are among the few that recognize lipedema regularly. However, only people who have developed secondary lipo-lymphedema go see these doctors. This means lipedema is usually only diagnosed in its later stages, once significant damage has been done. This results in fewer treatment options and worse outcomes for patients.

If we are ever going to improve care for people with lipedema, the medical community needs a specialty that will spearhead treatment and research on lipedema and its resulting lymph complications so that lipedema can be caught and treated earlier.

Additionally, we need a centralized, weight-neutral source of information that does not further weight-based stereotypes (see below). Some lipedema resources are in the process of being developed now, but further development is clearly needed. 

Impact On Health Care

Lipedema has a tremendous impact on a woman's health, both due to the condition itself and because of its impact on the quality of healthcare given.

As noted, many women with lipedema go undiagnosed for years. Often, lipedema is not diagnosed until it has progressed to severe levels and major complications have developed.

Yet even among care providers who know about lipedema, patients often receive inadequate or incorrect treatment, leading to complications that may have been avoidable. Even these complications themselves are often mistreated, leading to chronic health issues, disability, and sometimes even life-threatening sequelae. 

All of these situations combine to have a tremendous negative impact on the health of people with lipedema. 

Delayed Diagnosis and Underdiagnosis

As noted, many women with lipedema go for many years before their lipedema is diagnosed, and this delay in diagnosis results in more complications accruing. One German paper notes:

Because of the widespread lack of awareness of the medical condition ‘lipedema’ in the medical profession, this disease is usually first diagnosed when it has reached a very advanced stage, and sequelae have already developed: In half of cases, it is not until ten years after lipedema first develops that the diagnosis is made, and in almost a quarter of cases it is even 30 years or more! Many of the women affected have to endure a living hell until a diagnosis is finally made and they receive help.

Far too often, the diagnosis does not originate with providers because they do not know about this condition. Many women realize they have lipedema via the internet and then bring that information to their care providers, whom they must often educate about lipedema. Despite acceptance of lipedema from many medical societies, they may still be told they are just making excuses for being fat.

Although medical awareness of lipedema and lipolymphedema has increased recently, there is also pushback about this diagnosis from some in the medical community. Another German research article called the diagnosis of lipedema "trendy" and implied that it is being overdiagnosed:

Due to its increased presence in the press and on television, the diagnosis of lipedema is on the way to becoming a trendy diagnosis for those with thick legs. Despite this, one must recognize that lipedema is a very rare disease.

A rare disease? If about 11% of women have lipedema, that is hardly a "very rare" disease.

But some researchers question this estimate of the incidence of lipedema. Because lipedema in its early stages is hard to distinguish from just a pear-shaped body, it's hard to prove whether that 11% figure is accurate or not; some cases really may just be a tendency towards gynecoid deposition of fat.

But clearly, for many people lipedema is far more than just a pear-shaped body. They also have the nodules of abnormal fat tissue under their skin, hypermobility and joint issues, muscle weakness, legs that are painful to the touch, frequent bruising, great difficulty losing weight, and problems with the lymph system. 

Whatever the true incidence is, it seems clear from looking around society that lipedema is not a "very rare" disease, and there are likely far more women going undiagnosed than a rampant overdiagnosis of the condition. Medical resistance is more a result of institutional and personal weight bias than a legitimate concern about a trendy diagnosis. 

Undertreatment of Lipedema

Even when lipedema has been diagnosed, treatment is often inadequate or inappropriate.

Many doctors receive minimal education about the lymph system. Since there is no specialty with centralized expertise in lymph issues or with lipedema, there are very few specialists or experts to consult with about possible treatments. This means that doctors sometimes conclude there is little to be done for lipedema and so prescribe virtually no action. Patients may be told that they have a progressive condition that will inevitably get worse and that there is nothing to be done to treat it, or that treatments are only needed if a severe stage develops. 

While it's true that lipedema cannot be cured at this time, there ARE legitimate treatments for lipedema, and lipedema is not always progressive and life-threatening. No one understands why some people with lipedema progress to severe stages and others do not, but adequate treatment may lessen the chances of it becoming severe or causing secondary complications. 

Unfortunately, even known effective treatments are often not used. Manual Lymph Drainage treatments, compression garments, bandaging, and pneumatic pumps are effective at reducing the severity and progression of lipedema, but frequently are under-utilized because of hassles with insurance companies. 

Compression garments may not be not covered by health insurance. This can be particularly difficult for high-BMI people because these garments often have to be custom-made, which is very expensive. Only people with substantial disposable income are able to afford them out-of-pocket, which means that the poorest people are the ones whose lipedema progresses most severely and have the most complications.

Insurance companies also rarely cover lymph-sparing tumescent liposuction, the one treatment that seems to be the most effective for lipedema. They see liposuction as always cosmetic, even though there is mounting evidence that lymph-sparing liposuction (not normal liposuction) is an effective medical treatment for lipedema, resulting in a remission from the worst of the lipedema. Yet lipedema patients must typically pay many thousands of dollars out of pocket to access it, which puts it out of reach for most. 

Although it requires tenacity, lipedema patients can sometimes win against the insurance companies and get coverage of needed treatments. You can read one woman's story of fighting the insurance company for lipedema treatments here.

However, lack of knowledge about the lymph system, about lipedema treatment, the lack of lipedema specialists, and insurance coverage hassles mean that most lipedema patients are chronically undertreated. 

Mistreatment of Lipedema

While undertreatment is the most common problem with lipedema management, mistreatment can also be a significant problem. Because care providers receive little education about lipedema, some patients are prescribed ineffective or even harmful treatments. 

As we have seen in previous posts, care providers have sometimes prescribed diuretics or traditional cosmetic liposuction out of ignorance, both of which have been shown to worsen lipedema rather than help it.

Similarly, many care providers do not realize that lipedema patients typically need lighter compression garments or may not be able to tolerate compression garments at all because of differences in pain levels between regular lymphedema and lipedema. Similarly, the shape of traditional compression garments for lymphedema patients are often inappropriate for lipedema patients:

Standard size graduated compression stockings are based on the assumption of the legs being tapered from smaller at the ankles to largest at the upper thigh area. For lipoedema or lipo lymphedema sufferers however, the legs can be shaped very differently with bulges, fat pads and indentations in varying locations along the leg. 

In such cases it is very important that strong consideration is given to the shape of the patient’s legs before determining what type of compression garment would work best for them. To be most effective, compression garments can be custom made to accommodate the individual’s irregular leg shape.

Additionally, if lipedema patients develop complications like joint problems, mobility issues, or skin infections, these are often grossly mistreated due to ignorance, bias, or lack of adequate knowledge of optimal treatments for high-BMI people.

For example, underdosing medications is a major problem for people with lipedema. Research shows that many "morbidly obese" patients with cellulitis or erysipelas skin infections are underdosed with antibiotics in the Emergency Room, even in hospitals that specialize in high-BMI patients. Many of these patients likely have untreated lipo-lymphedema (which often results in skin infections), but are given inadequate doses of medications for treating the infection. This sets them up for chronic, worsening infections because the bacteria can mutate to a less-treatable form. 

Sometimes medical maltreatment of lipedema becomes life-threatening. One website tells the story of a woman with lipedema who developed cellulitis. She went to the Emergency Room several times with reddened legs (the "red socks" look), fever, and pain. She was sent home with inadequate care three times. The fourth time, she was admitted but it was too late; the infection had spread and she had become septic. She died the next day.

Lipedema itself is not fatal, but in its severe forms it can lead to mobility issues and secondary infections which can be life-threatening. The story above demonstrates why it is so important for lipedema patients to be proactive about care and INSIST on having their needs met. It also demonstrates why it is so important for care providers to be better educated about proper treatment of people with lipedema.

Unfortunately, usually the only thing most of them focus on is weight loss.

Weight Bias in Lipedema Care

Even when care providers DO recognize lipedema as a legitimate condition and offer treatments known to be effective, weight bias still impacts care.

Even doctors who specialize in lipedema treatment still hold many biased assumptions about lipedema patients' behavior and habits. They often prescribe unproven interventions based on these biased assumptions. Some even refuse care unless patients agree to weight loss or "rigorous weight control."

These care providers mean well. They sincerely want the best for their patients, but have been so indoctrinated with stereotyped assumptions and attitudes that it is difficult for them to see their own biases and how these impact care.

Lipedema specialists must painstakingly and honestly search their own attitudes and treatment recommendations for unconscious weight bias if care for lipedema patients is to improve.

Assumptions About Habits

Before diagnosis, lipedema sufferers are usually assumed to have "eaten themselves" into complications. They are constantly told to eat less and exercise more. When food diaries are presented showing normal intake, care providers accuse patients of lying, of lying to oneself, or of drastically under-estimating their intake. Women with lipedema often spend years and years on ever-stricter diets, achieving only small amounts of weight loss or even gaining weight while dieting and exercising, all while being blamed for being "non-compliant." 

Sadly, getting a lipedema diagnosis may not help that much.

Even care providers who know about and treat lipedema often have erroneous assumptions about patients' eating habits. One of the main treatises about lipedema says (my emphasis):

Many women describe their frustration as their condition deteriorates, often leading them to overeat and consequently gain weight. Thus it is not surprising that around half the patients end up suffering from obesity in addition to the lipedema.

Another major paper from Germany states:

Weight gain in lipedema is usually not predestined, but fundamentally determined by the general nutritional and exercise behavior. 

Here we see again the assumption that weight gain must ALWAYS be because of overeating ─ even when the patient has a condition that results in the abnormal deposition of fat. 

Many women with lipedema tell stories of a sudden gain in weight despite rigorous diet and exercise routines and no change of habits. Sudden, unexplainable weight gain is an extremely common symptom listed in the histories of countless women with lipedema, yet they are still being blamed for these gains by their lipedema care providers ─ the very people who should understand most.

The German paper cited previously that decries the diagnosis of lipedema as "trendy" goes on to contend that most fat "lipedema" patients are actually only fat, with lipo-hypertrophy (fat overgrowth) instead of real lipedema. It contends that treatment with Manual Lymph Drainage  (MLD) or other lipedema modalities is counter-productive, keeping them from the REAL business of losing weight (read bariatric surgery). The authors state:

Therapy options here are...long-term weight loss and exercise. In high-grade obesity this should be accompanied by medical and psychological support, ideally through an obesity center. Simple diets are not suitable. A long-term change of lifestyle and nutritional behavior is required. In case of morbid obesity surgical interventions such as gastric banding or gastric balloon insertion are often necessary...The physician’s prescription of MLD in this situation carries the risk of lack of action and compliance of the patient with respect to the urgently needed general measures such as weight loss and exercise.

While it's true that not all obese people have lipedema, this is another example of care providers minimizing possible medical explanations of extra weight because they are concerned it will interfere with fat people taking responsibility for their "unhealthy lifestyles" and avoiding drastic measures like bariatric surgery.

Unfortunately, many lipedema sites also promote these outdated stereotypes of fat people. One prominent source of information about lipedema on the internet states (my emphasis):

Medical management involves treating the hormonal disturbance as effectively as possible and providing nutritional guidance to avoid additional weight gain. Many of these individuals have endured years of ridicule because of their physical appearance and become recluses in their homes, further limiting their activity level. As lipedema progresses and the hypersensitivity increases, they feel less inclined to walk or exercise because of the pain. They inevitably gain more weight due to the inactivity and depression, often finding food their only comfort.

Really? Did a major medical site just promote the sweeping generalization that most people with lipedema "find food their only comfort"? Here we go again, assuming that severe presentations of the disease are simply caused by binge eating and emotional problems rather than the disease itself. 

Yes, there are some severe lipo-lymphedema cases who are house-bound emotional recluses with binge eating disorders, like those on certain highly-prejudicial TV shows. Years of dieting can develop into major eating disorders. But it's not true that this scenario applies to all ─ or even most ─ people with lipedema.  

MANY lipedema patients do not have eating disorders, many are extremely strict with their nutritional intakes, and most stay active and maintain a social life despite the challenges of lipedema.

Promoting the stereotype of the huge house-bound emotional recluse only adds to the bias that lipedema patients encounter. To see it promoted in medical resources is deeply disturbing.

Medical care providers have enough weight bias; it's time for online lipedema resources and medical texts to stop propagating such outdated and inaccurate stereotypes.

It is absolutely unconscionable that such stereotypes continue to be promoted within lipedema resources and medical texts. They need to be removed as soon as possible. 

Weight Loss and Diets as Panacea

Most caregivers who are unfamiliar with lipedema emphasize weight loss for treatment. They only see the patient's fatness, so they view the cure as dieting because they've been taught that obesity is due to poor habits. That's unfortunate but to be expected of caregivers who don't understand lipedema.

What's far more frustrating, however, are the caregivers who specialize in lipedema and lymphedema and who still make weight loss and dietary restrictions a main focus, despite no evidence showing that such interventions are helpful. 

In some practices, such interventions are even a requirement for further care or for treatment, like in some lymphedema practices.

Many lipedema specialists say they only promote dieting so that "non-lipedemic" fat is lost. They admit that dieting is unlikely to bring much loss in the lipedemic areas, but still contend that fatness outside of the hips/legs/arms must only be due to poor lifestyle and can be easily lost.

This assumption needs to be strongly questioned.

Of course lipedema patients need to be careful of lifestyle, but doctors are wrong to assume that fat elsewhere can only be due to poor lifestyle. As lipedema progresses in severity, many patients notice fat gain in supposedly non-lipedemic areas (abdomen, waist, breasts, neck, back), even in the presence of reasonable lifestyle choices. I believe that it will eventually be shown that this too is a by-product of lipedema and associated metabolism issues. In the meantime, these doctors need to listen to lipedema patients when they say that fat in these areas does not always result from poor lifestyle choices.

Lipedema specialists routinely place patients on strict "anti-inflammatory" diets, complete with forbidden foods and "good food/bad food" messages, despite no research showing that an anti-inflammatory diet is helpful. In addition, the fat-shaming language that some lipedema resources use when giving nutritional advice is problematic. Years of dieting mean that many people with lipedema have had brushes with eating-disordered behaviors; fat-shaming language and the push for weight loss in some lipedema resources can make this worse. 

Does this mean that an anti-inflammatory dietary approach can never be suggested? No, it's possible this approach might be helpful for symptom relief but accurate information is key. Patients can be told that some women have anecdotally reported improvement on anti-inflammatory diets, but the approach should not be presented as evidence-based medicine nor the only approach to treatment. Women should be informed that such dietary approaches are experimental and it is unknown whether they are effective.

The same goes for weight loss programs or bariatric surgery. These have not been studied in the context of lipedema and we don't really know what benefits or risks they entail. Since dieting is one of the most potent predictors of weight and fat gain, it could be that continuing to promote weight loss and restrictive intake among lipedema patients is actually only making things worse instead of better. There is no evidence that weight loss results in long-term improvement among lipedema patients; doctors just assume it will. In fact, some people report worse outcomes afterwards. 

Lipedema doctors need to ditch the shame and blame model. Some tell themselves they are fat-friendly and sympathetic but too many are still stuck in the mentality that fat in the "wrong" spot can only be due to lifestyle excesses and spend far too much time pressuring people for weight loss and restrictive nutrition. Patients who decline these interventions are deemed non-compliant and shamed. Some providers even try to force compliance by withholding treatments or access to care.

Lipedema doctors would do far better to promote a Health At Every Size® approach instead. They can emphasize the importance of a healthy lifestyle but without focusing on the scale, dieting practices, or restrictive nutrition as measures of "success" or compliance with treatment.  

Refusal of Care Without Weight Loss

One of the great ethical quandaries of modern medicine is whether there should be weight limitations for healthcare services.

Too often, access to healthcare is tied to weight loss. Fat people are regularly refused knee replacement surgery, organ transplants, and sometimes even pain medications unless they lose weight, have bariatric surgery, or agree to see a weight loss specialist.

Sadly, this refusal of care often extends to lipedema patients. 

Many lymphedema treatment programs see weight loss as an integral part of treatment. Some lymphedema therapists have been known to refuse treatment to "morbidly obese" patients (many of whom have lipedema) who will not agree to weight-management programs of some sort. One program requires patients to commit to:

...maintaining a constant weight or preferably losing weight during the course of treatment...Patients 'contract' for continued care by exhibiting positive behaviors regarding weight loss, attendance at bariatric support groups, Weight Watchers®, or other beneficial practices. 

The authors make it clear that patients are strongly encouraged towards bariatric surgery and conclude:

Based on clinician observation and experience, management of the morbidly obese patient with lymphedema requires that the obesity be addressed in a frank and supportive way. Many morbidly obese patients exhibit a strong element of denial regarding the disease of obesity. Obtaining treatment for obesity is a life-or-death decision but patients often focus more on the treatment of an obesity symptom – ie, edema – than the underlying problem that will shorten their life. Treatment of lymphedema must be linked to the treatment of obesity if long-term success is to be achieved. 

This is the typical response from care providers who have a strong weight bias: 

• They view the underlying problem as psychological, even when there is evidence of physical disease causing the increased fat
• They promote weight loss as the main solution, even when weight loss does not usually help lipedemic fat
• They use access to healthcare as blackmail to force people into weight loss diets or bariatric surgery

Although people with lipedema should always be encouraged to pursue healthy habits to minimize the possibility of further weight gain, weight loss should NEVER be a requirement for healthcare access, nor should patients be subjected to constant harassment if they have declined weight loss interventions.

Care providers need to recognize that unexplained weight gain is a part of the lipedema syndrome, that weight gain may have nothing to do with dietary habits, that some weight gain may be unavoidable, and that for some, weight loss efforts may actually result in worse outcomes in the long run. High-BMI people have the RIGHT to opt out of weight loss programs if they don't want them or feel they would be harmful. 

Treatment for lipedema and lipo-lymphedema should NEVER be contingent on having to agree to weight-loss treatment, bariatric surgery, or special dietary regimes.

This is respect for basic patient autonomy, yet it's quite telling that violations of this basic right still occurs regularly in the lipedema and lymphedema field. 

Conclusion

The most difficult challenges of lipedema involve getting diagnosed in the first place, then getting adequate health care and respectful treatment.

Lipedema is a very real clinical entity, but sadly is nearly unknown among medical professionals in many parts of the world. European doctors have more knowledge and experience with lipedema than doctors elsewhere, but even in Europe women report difficulty in getting diagnosed.

This means that millions of people around the world are suffering with lipedema but can't even get a diagnosis, let alone adequate treatment for it.

Weight bias, both on an institutional and individual level, has played a strong role in this. Lipedema has been recognized as a condition for 75 years, yet we still don't have an ICD diagnosis code for it and insurance still largely does not cover its treatment. Until that happens, people with lipedema will continue to be blamed for their weight and for complications that are associated with lipedema.

Unfortunately, even when caregivers do recognize lipedema, weight bias continues to interfere with its treatment. Some care providers mistakenly believe that there is no effective treatment and so the patient's lipedema worsens without intervention. Others order helpful treatments such as compression garments or lymph-sparing liposuction which insurance companies short-sightedly refuse to pay for.

Weight bias continues to affect even those who specialize in treating lipedema. Many continue to make negative assumptions about the eating habits and emotional health of people with lipedema, and too many lipedema resources are filled with negative stereotypes. It is time for lipedema specialists to look honestly at their own biases and assumptions, and it is long past time for offensive and harmful stereotypes to be removed from lipedema informational sites.

Some providers require weight loss in order to access basic treatment, despite the fact that lipedema makes weight loss extremely difficult and rebound gains are common. Lipedema patients should never be pressured into weight loss, bariatric surgery, or particular dietary approaches. These can be offered as an option, but should be not be a requirement for care. Patients always retain the right to autonomy over their medical decisions, including weight loss, surgery, or a particular nutritional approach; if they decline these interventions, they should not be penalized. 

Nor should weight-loss interventions or special dietary approaches be presented as evidence-based treatment. No studies showing the benefit of these for lipedema patients exist at this time. Care providers need to stop promoting anti-inflammation or paleo diets as the "best" way to avoid lipedema progression; limited anecdotal evidence suggests they might help, but we don't have actual proof of that and patients deserve full disclosure that hard evidence is lacking. 

Furthermore, true informed consent means that patients need to be presented with information on both the benefits AND the risks of a proposed treatment (i.e., weight loss). Care providers must be honest about the strong evidence that few people manage to lose to a "normal" BMI or keep the weight off for any meaningful length of time, that weight loss has its own risks, that weight loss often leads to weight cycling and greater rebound weights, and that weight cycling also has risks.  

In conclusion, to improve conditions for people with lipedema the medical profession urgently needs to take the following steps:

• Expedite and approve an ICD diagnostic code for lipedema
• Require that medical schools teach about lipedema
• Identify a medical specialty to spearhead and drive lipedema research
• Increase funding for lipedema research, especially into potential causes of lipedema
• Aggressively raise awareness of lipedema among general care providers 
• Raise awareness of and increase utilization of lipedema treatment options
• Require that insurance companies cover proven treatments for lipedema, including manual lymph drainage, compression garments, and lymph-sparing liposuction 
• Initiate an intensive educational campaign about best-practice treatment of secondary infections like erysipelas and cellulitis in people with lipedema and lymphedema 
• Aggressively investigate and promote awareness of proper dosing of antibiotics and other pharmaceuticals in people of size
• Intensively promote gold-standard research into potential treatments for lipedema from both "conservative" and "alternative" models
• Conduct long-term (not short-term) research on weight loss and anti-inflammatory or paleo nutritional approaches for lipedema
• Continue research on whether lymph-sparing liposuction prevents or delays lipedema progression and severity
• Eliminate weight-biased assumptions, fat-shaming language, and offensive fat stereotyping in lipedema resources
• Question assumptions that fat in non-lipedemic areas must be due only to "lifestyle" issues
• Eliminate biased guidelines that require weight loss or weight loss treatment in order to access medical treatments like lymphedema therapy or lymph-sparing liposuction

Lipedema patients have been underdiagnosed, undertreated, manipulated, mistreated, shamed, and blamed for too many years. It is long past time for some radical change in how lipedema patients are perceived and treated by the medical field.

Weight bias in lipedema treatment is insidious and extremely pervasive. This weight bias is a major barrier to improving care and outcomes for lipedema patients. 

I believe that most medical professionals are good-hearted people and genuinely want to help lipedema patients, but until they unflinchingly examine the effect of both personal and institutional weight bias on medical care for people with lipedema, progress will only be modest. 

References and Resources

Resources

*Trigger Warning: Many of these sites are not fat-friendly or promote dieting behaviors

• http://www.lymphedema-therapy.com/Lipedema.htm
• Cure Lipedema http://www.curelipedema.org/#
• Karen L. Herbst, PhD, MD http://www.lipomadoc.org/lipedema.html
• Fat Disorders Research Society, Inc. http://www.fatdisorders.org/
• Lymphedema Therapy http://www.lymphedema-therapy.com/Lipedema.htm
• United States National Library of Medicine, National Institutes of Health http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3309375/
• Wikipedia http://en.wikipedia.org/wiki/Lipedema
• Big Fat Legs http://www.bigfatlegs.com/
• Peninsula Medical http://www.lymphedema.com/lipedema.htm
• Lymphedema People http://www.lymphedemapeople.com/wiki/doku.php?id=lipedema
• My Lipedema http://www.mylipedema.com/lipedema.html
• Lipoedema Ladies (U.K.) - http://www.lipoedemaladies.com/ 
• WebMD article - http://www.webmd.com/women/guide/lipedema-symptoms-treatment-causes 

Research Articles

J Dtsch Dermatol Ges. 2013 Mar;11(3):225-33. doi: 10.1111/ddg.12024. Epub 2012 Dec 11. Thick legs - not always lipedema. Reich-Schupke S1, Altmeyer P, Stücker M. PMID: 23231593

Due to its increased presence in the press and on television, the diagnosis of lipedema is on the way to becoming a trendy diagnosis for those with thick legs. Despite this, one must recognize that lipedema is a very rare disease....

Lipedema, Part 5d: Alternative Medicine Treatments

Image from Lipoedema Australia Support Society (LASS) 

We have been doing a long series about Lipedema, sometimes known as "painful fat,"  "big leg," "riding breeches," or "two body" syndrome.

In lipedema (also spelled lipoedema), the fat cells in certain parts of the body experience overgrowth and swelling. It results in an abnormal accumulation of fat, particularly in the lower half of the body; often the arms are affected too.

As we have discussed, lipedema is rarely recognized by doctors, despite being discovered 75 years ago. Often it is thought to be simple obesity, or it is confused with "lymphedema," the accumulation of lymph fluid in the interstitial areas.

In Part One of this series, we discussed the typical features of lipedema and how differentiate between lipedema and lymphedema.

In Part Two of the series, we discussed how lipedema progresses, the different stages of progression, and why it's so important to be aware of lipedema

In Part Three of the series, we discussed the different types of fat distribution patterns, looked at some pictures to illustrate type and stage of lipedema, and detailed how lipedema is diagnosed.

In Part Four of this series, we examined possible causes of lipedema, as well as medical conditions often associated with it.

Now, in Part Five, we are discussing possible treatments for lipedema in detail. Because we want to give more detail about each option, we are breaking the treatments into several sub-posts:

• Traditional Medical Treatments 
• "Weight Control" and Special Nutritional Approaches (trigger warning)
• Tumescent Liposuction
• Alternative Medicine Treatments
• Treatment Options Summary

In Part Six, we will discuss practical ways to deal with and live proactively with lipedema.

But today, let's talk about possible treatments for lipedema from the "alternative medicine" world.

Then in the last Treatments post, we will then summarize what we have learned of the various lipedema treatment options.

Alternative Treatments

Traditional medical treatments have not been all that successful in treating lipedema, so many lipedema sufferers turn to alternative medicine as well. Many people seem to have the best success combining traditional treatments with alternative treatments.

These can include:

• Supplements and herbs
• Lymphatic Brushing
• Acupuncture
• Chinese Medicine
• CVAC™
• Vibration Plates
• Detox Procedures

Let's talk about each of these a little bit more in detail. 

Supplements and Herbs

Some doctors and advocates recommend certain supplements and herbs to help with lipedema. The three that are mentioned most often are Selenium, Butcher's Broom, and benzopyrones, but there are a host of others that are sometimes suggested as well.

The problem is that most of these have been used to treat secondary lymphedema or chronic venous insufficiency and then this use has been extrapolated for lipedema as well. While symptoms may cross over between these conditions, lipedema is not the same as lymphedema or venous insufficiency. It does not follow automatically that treatments helpful to these other conditions will also be useful ─ or even safe ─ for lipedema. 

Very little research specific to the use of these supplements with lipedema exists, so insert caveats. We just don't know how effective these are ─ or not ─ for lipedema. Still, some women are willing to experiment with these, so let's discuss the most common options. 

Selenium is a trace mineral that reduces fluid retention. It is often used with people who experience lymphedema after cancer treatment. It seems to be relatively effective in helping reduce secondary lymphedema. It has distinct advantages in that it is relatively cheap and seems to have a fairly low toxicity profile unless given in high doses. 

Limited research also suggests selenium may be helpful for PCOS and autoimmune hypothyroidism (Hashimoto's), conditions often found in conjunction with lipedema. However, a Cochrane research review found that the available favorable evidence for using selenium with autoimmune hypothyroidism was at high risk for bias, and that more neutral research was needed before forming conclusions.

Research suggests that elderly people with the lowest selenium concentrations in their blood have a higher mortality risk. On the other hand, some research has found that people with a high selenium intake are at increased risk for developing diabetes.

The benefits of selenium may be most marked in people with low selenium intake/blood levels, while its utility for those with normal levels is more questionable. If you are considering taking selenium, it seems logical that finding out what your selenium levels are ahead of time might be a reasonable precaution. It would also seem sensible to not take too high a dose, just in case.

The bottom line is that we need more research on selenium and its use specifically for lipedema and lymphedema.

Butcher's Broom is an herb (usually taken as a powdered extract in a capsule) that is thought to improve lymphatic flow. It is derived from the plant, Ruscus aculeatus. According to research, it "has been shown to bind as an agonist to alpha adrenergic receptors on lymph cells, increasing lymph fluid movement within lymph vessels."

Butcher's Broom has been shown to be modestly effective against chronic venous insufficiency, which is why some people have theorized that it might be helpful for lipedema. Some anecdotal stories suggest Butcher's Broom may be helpful for people with lipedema or Dercum's Disease. At least one case report documents significant improvement in a lipedema patient after use of Selenium and Butcher's Broom in conjunction with compression garments and Manual Lymph Drainage therapies. However, more research is clearly needed.

Benzopyrones (including coumarin) are a type of flavonoid that have been used with lymphedema patients. They were used outside of the U.S. in the 90s but were never approved within the U.S. They supposedly reduce vascular permeability and aid in the destruction of proteins so that protein fragments can pass more easily into blood vessels and be removed by the vascular system. In addition, benzopyrones may stimulate lymphatic activity.

Research on the efficacy of benzopyrones was conflicting and there were significant safety concerns because of liver toxicity with long-term use. A Cochrane review felt the quality of research trials were too poor to do a meta-analysis of the research. At this time, benzopyrones are not usually used for lipedema or lymphedema treatment.

Modifilan is a supplement that some lipedema patients report using. According to them, fat cells tend to accumulate debris and toxins, and this supplement helps detox the cells.

Wobenzym is another supplement used by some patients with lipedema. This one is is an enzyme that is reputed to "help unclog proteins" that have accumulated in a sluggish lymphatic system. There are detox regimens available online for lipedema lymph systems.

Curcumin, a substance in the spice turmeric (the dark yellow spice found in curries), is often used by women with lipedema because it is a potent anti-inflammatory. It has been shown to decrease blood sugar, slow or prevent the progression of prediabetes to diabetes, and decrease diabetic complications in some trials. It also may decrease arthritis symptoms and pain. However, it can decrease blood clotting so it should be used carefully if you are on blood thinners, aspirin, NSAIDs, etc.

In addition, many lipedema patients have experimented with other supplements like horse chestnut seed extract because it has been shown to be helpful with venous insufficiency and varicose veins. Medium-chain fatty acids such as those found in coconut oil are recommend by some.

Herbs and substances thought to have an anti-inflammatory effect often are suggested. These may include ginger root, milk thistle, brown and green seaweed, bio-rutin, cayenne pepper, and fish oil (with omega-3 fatty acids).

Dr. Karen Herbst, an endocrinologist and one of the top lipedema specialists in the U.S., suggests that people with lipedema consider taking selenium, along with bioflavonoids like horse chestnut seed extract, pine bark extract, grape seed extract, or quercetin (found in onions). She recommends alternating types of bioflavonoids and adding a potent anti-oxidant like N-acetyl cysteine (NAC).

Dr. Herbst also recommends strengthening the immune system; she uses cimetidine (available over the counter as Tagamet, a heartburn medicine) as an immune modulator, but notes that this can affect the liver, so liver enzymes must be monitored with its use. Cimetidine also has weak anti-androgen properties, so if you have PCOS and are on other anti-androgenic medications, beware of a possible additive effect. Because cimetidine can affect the liver, levels of other medications can also be affected, so a careful consult with a doctor is needed. As an alternative, she suggests "yeast Beta 1, 3-D glucan" to boost the immune system. Contact her directly (see link for contact info) if you'd like a personal consult to get exact recommendations for your unique needs.

Don't forget, some of the most potent bioflavonoids are the colorful fruits and vegetables. Eating a wide variety of these every day may be a powerful help in keeping things as normal as possible. Adding a little turmeric or ginger to your foods as a spice might also help. 

Lymphatic Brushing

To help the lymph system work more efficiently, Manual Lymph Drainage is done by professionals. However, there is also lymph drainage which you can do at home on yourself. The home version does not replace the professional version, but the pros really encourage patients to follow up with home techniques to keep making progress between sessions.

There are several different techniques recommended, but the most popular right now uses actual brushes. You can read more about these here and here and here.

However, remember that dry brushing is also a trendy fad in spas to "release toxins" and "break up cellulite," and doesn't have much research proving its efficacy.

Vibration Plates

Anecdotally, some women are using vibration on the body to try to break up fibrotic tissue, lipomas, and "flush out toxins and extra fluid." And of course, many of these vibration plate machines are advertising how great they are for weight loss and "breaking up the fat."

This sounds like a new variation on the old fat-vibrating machines from old TV and movie ads, so personally I am dubious about this treatment. However, the "new" versions are much less violent in their shaking and supposedly therefore safer.

However, some research suggests that vibration can increase blood flow and lymph flow in the lower body, as well as strengthen muscles modestly.

The Fat Disorders Research Society mentions vibration as a possible treatment for lipedema, especially for those with mobility issues who can't do normal exercises. However, they suggest that compression garments should not be worn during a vibration plate session, unlike other exercise.

If this really does turn out to be a helpful therapy option, then it could have significant implications for those whose advanced lipedema makes regular exercise difficult. However, I'd like to see some actual research on lipedema patients before I get too excited about this one.

CVAC™

CVAC is listed in some lipedema materials as a possible treatment, but with few details. CVAC™ stands for Cyclic Variations in Adaptive Conditioning. It reduces the fluid in tissues by "variable patterning of different atmosphere pressures around a person sitting in an altitude simulator." Basically, people are placed in a hypobaric chamber and then rapidly cycled through different pressures designed to simulate different altitudes, using "whole body cyclic pneumatic hypobaric compression."

This is a trendy treatment for athletes, who view it as an efficient way to increase oxygen-bearing capacity and improve performance. Many elite athletes are using it these days, and a few gyms even have these machines.

However, it is also being used for people with chronic diseases, especially those which may not permit them to do a lot of active exercise. The cycling through of different pressures allows exercise "at the cellular level," according to the device's website. Some patients with diabetic neuropathy have reported great improvement, and it may help improve insulin resistance and sleep as well.

There is a study on CVAC™ for people with Dercum's Disease, another Rare Adipose Disorder somewhat similar to lipedema, with suggestions that it might be helpful for people with lipedema too. Anecdotal stories suggest it does help reduce pain significantly in some people with Dercum's Disease. Only more study will tell if it is helpful for people with lipedema.

Acupuncture

In the lymphedema community, treatment with acupuncture would be considered an absolute no-no.

When people have severe lymphedema after cancer treatments, for example, they have to carefully avoid anything that might injure the affected limb. Taking blood pressure or putting an IV in a lymphedema-affected arm can make the lymphedema FAR worse. And any holes, even very small ones, could be potential conduits for bacteria, and infections are a very real risk in lymphedema due to depressed immunity. So lymphedema patients are taught to NEVER let needles of any kind be put into an affected limb.

This lymphedema rule has been extrapolated to lipedema without knowing whether that restriction is true for lipedema. For one thing, acupuncture needles are extremely fine and don't go in that far, so they probably do not represent the same degree of risk that a blood-draw or IV needles would pose. For another thing, until Stage 4, lipedema doesn't present the same way as lymphedema or have the same risks. As a result, it's hard to say how risky acupuncture might be for someone with lipedema. My best guess is that it might depend on the degree of their lipedema, frankly.

It's only anecdotal of course (from only one case!), but I personally have acupuncture treatments all the time, even in my lipedemic legs, and it does not seem to make things worse at all. Indeed, I find it helpful for easing much of the pain, muscle tightness, and other symptoms that go hand in hand with lipedema for me.

On the other hand, I have not found it effective for reducing a lipedemic flare or the edema I experienced after two of my children's births. Personally, I don't think it's really an effective treatment for reducing edema, but it can be useful for some of the musculo-skeletal issues that can go along with an altered gait from lipedema. My acupuncturist also works on optimizing my thyroid function and minimizing PCOS symptoms, and it does seem to help that somewhat.

If you have Stage 4 lipo-lymphedema, then it seems sensible that acupuncture on the affected areas might be contraindicated. (I don't have lipo-lymphedema, so perhaps this is why I can have acupuncture without problems.) However, acupuncturists can do "distal" points ─ points that are far away on unaffected areas, yet which can still treat the affected area. Some people are still not willing to risk even that much potential exposure to bacteria when they have lipo-lymphedema, and it's easy to understand why they are cautious.

Bottom line, it seems to be a personal decision whether to try acupuncture, but I wouldn't say across the board that it's contraindicated ─ as long as you don't have secondary lymphedema.

Although acupuncture can be expensive in a private clinic, there are community acupuncture clinics where group treatments are very affordable, and many Chinese Medicine schools also offer steeply discounted appointments. Even if your insurance doesn't cover acupuncture, there may still be a way to afford treatment.

On the other hand, if you don't feel comfortable using needles anywhere, then by all means avoid acupuncture. Just remember that if you are intrigued by the possibilities but don't want needles, you can still receive acupressure in non-painful areas, or you can consult a Chinese medicine practitioner on herbs and other options as well.

Chinese Medicine

Chinese Medicine views lipedema as having a "yin" constitution, or too much cold and damp, if I understand it correctly. The Spleen in particular is considered the source of the edema (not "spleen" in the traditional Western sense of a specific organ).

The Chinese Medicine approach uses herbs to help balance the constitution, suggests avoiding certain foods (soy, dairy, and others), suggests avoiding cold foods, using lots of dried ginger and certain other herbs, and getting plenty of exercise. To read more about Chinese Medicine's approach to lipedema, read here and here.

Personally, although I regularly receive acupuncture, I do not use much other Chinese Medicine. I have never found it particularly effective for me, and I'm too Western in my thinking to be comfortable with the concept of "qi" or "damp" or "Yin-yang." I also am hesitant about using herbs without knowing a great deal about their efficacy, toxicity, or potential interactions.

However, many people have tried Chinese Medicine and find it helpful. Again, a Chinese Medicine college is an affordable option if finances are a concern.

Detox Procedures

Many people with lipedema feel that their tissues do not clear proteins and toxins well because of the impairment of the lymph system. They feel these toxins build up along with the excess fluids, and that it's important to find ways to "flush away" these things. Whether this is true or not is not really proven, but it does seem somewhat plausible. So many "alternative" treatments focus on "detoxing" from these substances.

Some promote the idea of soaking in a bath with Epsom salts (magnesium sulfate), which are available very cheaply over the counter in drugstores. As long as the Epsom salts are only used for soaking (and not taken internally), the magnesium is absorbed through the skin and that makes it harder to overdose. Some people like to shower afterwards, just in case.

Oral magnesium supplements do have the potential to cause low blood pressure, diarrhea, headache, hypoventilation, heart issues, lightheadedness, allergic reactions, or even death in some cases, so never take it internally (either orally or in an enema) without a doctor's guidance.

If you can overdose with internal intake, it's theoretically possible this could occur with skin absorption too. As a precaution, don't overdo the dose you put in the bath, don't take too many Epsom salt baths close together, and don't stay in a long time. Be aware that some people do report dizziness or extreme tiredness after an Epsom salt bath; eat well and be well-hydrated before a bath as a precaution. If you are allergic to sulfas, have unstable blood pressure, brittle diabetes, or open wounds, you should probably not use Epsom salts. If in doubt, talk to your provider before trying one.

Some people with lipedema promote Detox Smoothies, which is juicing certain vegetables and herbs together to help clear lymph toxins through specific nutrients. Whether any of this is helpful is unknown and has not been studied at all. Juice-only smoothies are pretty low-risk, but you might be better off eating the whole fruit so you get the fiber as well as the juice. If you are going to do a juice smoothie, eat a little protein with it to even out the effect of fruit juice without fiber on your blood sugar.

Juicing just fruits and veggies is probably not harmful, but be careful adding herbs. Herbs can be very potent medicines. Know what the herb you are using does, know its proper dosage, know how it could interact with any other medication you are on, and be sure you have a safe unpolluted source for that herb. Above all, avoid using unproven radical detox regimens.

Summary

Because traditional treatments are not all that effective in treating lipedema, many people have turned to alternative medicine for further choices. Unfortunately, there is not a lot of research on these alternative medicine options so it's hard to know what's effective or not.

The most commonly-used alternative treatment is supplements and herbs. Selenium is the supplement with the most research behind it. It has been shown to be helpful in reducing lymphedema symptoms. Whether it helps lipedema or not is still up in the air, but some leading experts on lipedema feel comfortable recommending it routinely, as long as doses are reasonable.

Some lipedema experts are also suggesting Butcher's Broom now. The combination of Selenium and Butcher's Broom was shown to help one woman with lipedema in a recent case report. However encouraging this is, it is only one case report so it does need to be verified by other research.

Benzopyrones used to be routinely recommended for lymphedema patients in non-U.S. countries but their potential for liver toxicity has put them out of favor now. Some doctors are recommending bioflavonoids instead now.

Turmeric has been shown to be a potent anti-inflammatory, so many people with lipedema are trying it. Although we have no research specifically on turmeric for lipedema, it has the advantage of benefiting a number of other conditions.

Other substances that are sometimes used for lipedema include horse chestnut seed, quercetin, pine bark extract, modifilan, wobenzym, grape seed extract, cimetidine, NAC, ginger root, milk thistle, brown and green seaweed, bio-rutin, cayenne pepper, and coconut or fish oil.

Dry lymphatic brushing is all the rage these days. It is reputed to help continue the benefits of Manual Lymph Drainage massage at home, but I am unaware of any studies proving this. Still, it seems unlikely to harm so it may be worth trying.

Vibration Plates is another trendy treatment, although this one seems to have cycled back from previous years. If effective, it could offer significant benefit for those whose mobility has been affected by severe lipedema. But first, we need some research showing its effectiveness for lipedema!

CVAC™ is a new therapy that uses cycling atmospheric pressures in a hypobaric chamber to help reduce fluid in tissues and improve oxygenation. Although mostly used with elite athletes at this point, there does seem to be some therapeutic potential for chronic diseases. It has helped the severe pain that some people with Dercum's Disease experience, and Dercum's is very similar to lipedema in some ways. This seems like a very interesting possibility to explore, but with limited potential, since these hypobaric chambers are not widely available. Again, we need research.

Acupuncture is probably contraindicated for those who have developed lipo-lymphedema, but may be okay for those who have not developed secondary lymphedema. There is no research on it for lipedema. My own experience (which is only from one person, of course) suggests that it doesn't really help the edema or reverse the lipedema, but that it can be very helpful for musculoskeletal pain and tightness that can be a side effect of lipedema issues. If it helps keep you from needing pain medication, then it seems worth trying.

Some people have explored Chinese medicinal herbs and treatments for lipedema. Some really feel helped by it. Although I use acupuncture regularly, I have not been willing to experiment with unknown herbs for safety reasons. Again, it would be helpful to have some research on it.

Finally, "detox" procedures are all the rage these days. Beware their very trendiness, and avoid any radical detox regimens. However, Epsom salt baths might be reasonable thing to consider if you use a little common sense, and juicing is unlikely to be harmful as long as it's done sensibly too.

As with any condition, treatment doesn't have to be all-or-nothing allopathic (traditional medical) or alternative. Most people mix a little of everything together. Nearly every lipedema treatment is lacking in long-term research to back up its efficacy and safety, so it's a bit of a crap shoot figuring out what to try. Don't limit yourself to only allopathic treatments, but do use common sense in whatever you try.

References and Resources

Resources

*Trigger Warning: Many of these sites are not size-friendly. However, because they also contain valuable information about lipedema and its treatment, they are included here.

• http://www.curelipedema.org/# - Cure Lipedema, lots of info on treatment choices
• http://lipedmeasimplified.com - Website of Catherine Seo, a leading advocate for raising awareness about lipedema; has information about various treatment choices
• http://www.lipomadoc.org/lipedema.html - Website of Karen L. Herbst, PhD, MD, one of the most pre-eminent researchers on lipedema. She is an endocrinologist practicing in Arizona
• http://fatdisorders.org/fat-disorders/lipedema-lipoedema-description - Website of the Fat Disorders Research Society 
• http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3309375/ - United States National Library of Medicine, National Institutes of Health 
• http://www.nhs.uk/conditions/lipoedema/Pages/Introduction.aspx - United Kingdom's NHS website page on Lipedema 
• http://www.hanse-klinik.de/englisch/Lipoedema.pdf - article on lipedema from one of the foremost clinics in Germany that treats lipedema
• http://www.lipv.nl/zslnokycordero.pdf - journal article about lipedema with many pictures
• http://www.lipedemaliposuctioncenter.com/about-lipedema.html - Liposuction clinic specializing in lipedema patients 
• http://www.thelymphoedemacliniclondon.co.uk/pages/treatment-for-lipedema-and-lipo-lymphoedema.php - treatment options for lipedema and lymphedema
• http://blog.wegohealth.com/2014/09/15/the-phases-of-a-lipedema-diagnosis/ - Guide to navigating a lipedema diagnosis, written by Sarah Bramblette, a prominent lipedema activist

Lipedema Support Groups

• http://www.lipoedemaladies.com/ - U.K. support group for lipedema
• http://www.lass.org.au/ - Lipoedema Australian Support Society (LASS)
• http://www.talklipoedema.org/ - U.K. support and information group for lipedema

Websites About Those Dealing with Specific Lipedema Treatments

• lipladyfab.wordpress.com - blog of woman dealing with lipedema and undergoing liposuction
• https://www.facebook.com/lilithnixroadtorecovery/posts/537379969717549 - Facebook page of a woman with lipo-lymphedema (this link takes you to her biography and lipedema story)
• https://mylipedemajourney.wordpress.com/ - a thin woman's journey with lipedema and tumescent liposuction to treat it
• https://livingwithlipoedema.wordpress.com/ - a British woman's journey with lipedema, particularly focusing on its emotional effect and the treatments she has tried
• http://www.laurajdavis.com/blog/category/lipolymphedema - one woman's history of lipo-lymphedema, failed attempts at weight loss, and treatment difficulties

Herbs, Drugs, and Supplements

J Support Oncol. 2003 Jul-Aug;1(2):121-30. Current status of selenium and other treatments for secondary lymphedema. Bruns F1, Micke O, Bremer M. PMID: 15352655

...Drug therapy has included the use of diuretics, corticosteroids, and coumarin- or flavonoid-type compounds. Diuretics and corticosteroids may be useful in edema of mixed origin and in palliative circumstances but cannot be recommended for persistent lymphedemas. Coumarin and flavonoids reduce swelling in all types of lymphedema, but their long-term use is problematic. One promising step in drug therapy seems to be the introduction of free-radical scavengers, such as selenium. Present data demonstrate that selenium can enhance the benefits of physical therapy in radiation-induced lymphedemas. The very low toxicity profile of selenium and its cost effectiveness are further arguments for its use in lymphedema treatment.

Acta Pharmacol Sin. 2012 Feb;33(2):155-72. doi: 10.1038/aps.2011.153. Rare adipose disorders (RADs) masquerading as obesity. Herbst KL. PMID: 22301856

...People with RADs [Rare Adipose Disorders] do not lose SAT [subcutaneous adipose tissue] from caloric limitation and increased energy expenditure alone...Treatment recommendations focus on evidence-based data and include lymphatic decongestive therapy, medications and supplements that support loss of RAD SAT....