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....

Seventh Annual Turkey Awards: Astronomical Cesarean Rates in Women of Size

Well, it's long past time for our seventh annual Well-Rounded Mama's Turkey Awards! Somehow 2014 got away from me, so we are doing this in spring of 2015, as our finale for Cesarean Awareness Month.

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:

1. fat-phobic care providers
2. scare-mongering and shaming tactic
3. jumping to conclusions about risks
4. scorched earth tactics
5. prenatal weight gain extremism
6. fat-phobic attitudes around treatment of PolyCystic Ovarian Syndrome (PCOS)

This year it's time to shine a critical spotlight on the astronomically high cesarean rates in high-BMI women in some studies, and the failure of some care providers to take any responsibility for the management policies that have led to these astoundingly-high rates.

Many studies decry the abysmally high c-section rates in "morbidly obese" women, but for the most part only use it to call for more stringent weight loss campaigns, rather than recognizing their own role in creating these rates.

These atrocious c-section rates will continue (and even escalate) until care providers can:

• Acknowledge their own responsibility in creating these high rates
• Examine objectively common protocols for managing pregnancy and birth in women of size and evaluate whether these protocols are helping or harming
• Find other tools for lowering cesarean rates besides expecting women to lose weight

This doesn't mean that women of size have no responsibility for their health habits. Of course they do, as all people do. Women should optimize their health habits before and during pregnancy in order to improve outcomes. There is nothing wrong with encouraging reasonable health habits.

But "obesity" is a complex thing. It can be the result of poor lifestyle choices, but often it is the result of genetics, medical conditions like PCOS or lipedema, or certain medications. Sometimes we don't know why some people are fat and others are not. What we DO know is that it is statistically very unlikely that most women of size will be able to "normalize" their BMI before pregnancy...or even close. 

If care providers are serious about lowering cesarean rates in women of size, they need to expand the discussion beyond the usual rhetoric of shaming, blaming, and putting women on diets. 

It's time for a more realistic approach that doesn't rely on finger-pointing and improbable weight loss expectations, but instead uses concrete steps that can be done right now, regardless of whether or not women lose weight. 

Unconscionably High Cesarean Rates

First, let's look at some studies that show just how bad the problem has gotten.

Check out this study from 2013 which documented cesarean rates in high-BMI women in Tennessee. Note the underlying high cesarean rates in every group in this institution; it's not just fat women that are getting cut. But then note how this cesarean-oriented culture results in especially high rates in "morbidly obese" women:

• "Underweight" women (BMI less than 18.5) -  26.0%
• "Normal Weight" women (BMI 18.6 - 24.9) -  31.4%
• "Overweight" women (BMI 25 - 29.9) -           39.1%
• "Obese" women (BMI 30 - 34.9) -                    40.8%
• "Morbidly Obese" women (BMI 40+) -            56.6%

This reminds me of a similar study from Kentucky, showing cesarean rates in morbidly obese women near 60% also.

You can find studies with even higher rates too, like this very large, multi-state study from more than a decade ago which found a c-section rate of 71% for women with a BMI of 52 or more.

Or a more recent study that found a nearly 70% c-section rate in women with a BMI of 35 or more.

Then there's this study from Michigan, which had a total cesarean rate of MORE THAN 80% for women with a BMI over 50. Seriously....they had a vaginal birth rate of only 19% in this group! Absolutely inexcusable. But of course the authors promptly blamed it on the women themselves and made an even stronger call for pressuring women for "weight control" before pregnancy.

I'm all for improving health before pregnancy, whatever your size, but this doesn't necessarily mean "weight control." I wish more care providers understood that the two things don't necessarily equate. I also wish they realized that these pushes for "weight control" often end up with rebound gain, making the patient fatter in the long run rather than thinner. When will doctors realize that the prescription they typically give for "getting healthier" actually often results in more weight rather than less?

But that's not what bothered me the most. What really bothers me is that none of these authors acknowledge IN ANY WAY that they or their policies could have any role in these insanely high cesarean rates. They only blame the women and call for weight control.

My question is...WHERE IS THE ACCOUNTABILITY FOR THESE EXTREME RATES? 

Lack of Accountability and Concern

Why aren't hospitals having their feet held to the fire for 60-80% c-section rates in obese women??? Why doesn't anyone care about all these women being cut?

Where is the concern for obese women's health with all this surgery? 

We know that surgery has more complications for high-BMI people; this is also true for cesareans. You'd think care providers would be doing all they could to lower cesarean rates rather than just passively accepting these sky-high rates and hoping against hope that fat women will lose weight before pregnancy next time.

Yes, we get it. As a group, fat women have more risks, more complications, and they are much harder to do surgery on if a cesarean is needed. I don't blame providers for being honest about the potential complications involved in serving high-BMI women and therefore wanting to see fewer extremely fat women because of the potential complications in attending them. I totally get that.

But some seem to use cesareans as a punishment for daring to be Pregnant While Fat. 

Many just sign fat women up for planned cesareans before labor even starts, or induce so many that it's no wonder their cesarean rate is so high. That's not good medicine. Providers are there to serve ALL women, even the more challenging cases, and to serve them with respectful care that doesn't add more risk.

The silence from researchers and care providers on this issue is deafening.

• Where is the research that questions such high cesarean rates in obese women? 
• Where are the community care providers who are protesting and saying that this rate of cesareans in women of size is totally unacceptable?
• Most importantly, where is the research that is actively trying to find ways to lower the cesarean rate in obese women?

The authors of studies like these throw up their hands like they are powerless against the tide of fatness and they have no choice but to cut because everyone knows that fatness interferes with the ability to give birth vaginally. These women brought it on themselves, right?

To which I say, BALONEY. 

Historically, fat women did not have such astronomically high cesarean rates, and often their cesarean rates were similar or slightly higher than "normal" BMI women. The picture is far different today.

One German study we discussed recently showed that while cesarean rates have increased in all groups over time, they've increased the most in "morbidly obese" women. Look at their comparison of cesarean rates between 1990 and 2012 by BMI group:

Category            1990           2012         Increase

Underweight       14.4%        27.9%       13.5%
Normal               16.1%        31.4%       15.3%
Overweight         19.5%       38.8%        19.3%
Obese I               22.3%       45.1%        22.8%
Obese II              25.0%       50.2%        25.2%
Obese III             26.9%       55.2%        28.3%

Cesarean rates have increased across the board in all groups, but the increase in cesarean rates in "normal" weight women was 15.3%, whereas the increase in Obese Class III women was 28.3%.

In just 22 years, the cesarean rate in Class III Obese women went from 26.9% to 55.2%.

Why? What changed? These stats compare women of the same size, so it wasn't the women who changed. Most likely it was the management of those women that changed, and the fear levels around their pregnancies.

If the cesarean rate in higher weight women has increased from 27% to 55% in 22 years, how far will it go in the next 20 years?

SOMETHING has to change in order to alter that trajectory. Let's start having a conversation about realistic things that can be done to change it.

Cesarean Practice Rate Variation Among Obese Women

As I've pointed out before, there was a large recent British study that found a 30% cesarean rate in "super-obese" women (BMI 50 or more) who were given a chance to labor. Yes, 70% of these super-obese women were able to give birth vaginally ─ when given the chance to do so. 

Yet hospitals in Kentucky and Tennessee, as cited above, had c-section rates of around 60%, nearly TWICE the British rate. And the Michigan study had rates even higher than that. Why?

These differences suggest that there are key differences in how high BMI women are being managed that is resulting in such wide variations in cesarean rates in this group, both over time and by location.

The good news is that means that there ARE things that can be done to lower the cesarean rate in higher weight women. So why isn't anyone studying what the Brits are doing that helps them have half the rate of c-sections in this group? (And I bet that their rates could be lowered, too, as the U.K. is certainly no haven for size-friendliness either.) Why isn't anyone studying what changed in the management of obese women in the previously-mentioned German  study that made their cesarean rates go up so much?

It's time for care providers to start focusing on the cesarean practice rate variation in obese women and learning from it.

Once we acknowledge that there is a wide range in the obese cesarean rate, we can more easily start studying the things that help lower the risk for cesarean in this group, and hospitals can work on meaningful changes that will improve outcomes. But I have yet to see one study that seriously addresses this issue.

Why Not Diets?

Sadly, the response of the obstetric community has mostly been one of shaming, blaming, and diets instead of willingness to look more closely at these patterns.

Of course, there are good providers are appalled at the poor treatment many women of size experience, and many try their hardest to provide gentle, respectful care to women of size. BRAVO to them.

However, too many providers still believe the myths around fatness and pregnancy, like the popular "soft tissue dystocia" theory. Many are convinced that the only real way to lower the cesarean rate in obese women is to get them to lose weight first.

Many will undoubtedly protest that it is a care provider's job to promote healthy habits and to help patients be healthier, so of course they should be pushing them to lose weight. After all, why not?

It's true that care providers should be promoting healthy habits...but it doesn't follow that losing weight is the result. This is part of the common misperception that fat people are only ever fat because they are "doing something wrong" and that fatness is always a voluntary choice based on laziness and lack of healthy habits.

Nope, obesity is far more complex than that ─ but that doesn't fit in with the narrative many care providers want to hear. They only want to blame fat people for their fatness, rather than acknowledging that the truth is much more tangled.

Should caregivers promote healthy habits? Absolutely ─ for women of all sizes. Programs that gently promote reasonable nutrition and exercise are fine, but they should apply to all women since poor lifestyle can be found in every body size. And contrary to public opinion, many fat people have very normal habits.

Let's stop buying into the illusion that promoting healthy habits will automatically result in permanent weight loss and a "normal" body size in everyone. It won't, and there is LOADS of research to support that.

While some providers acknowledge that "normalizing" BMI is very unlikely for most obese people, many still suggest pursuing a 5-10% weight loss. Some higher-weight people may choose to do this because some research suggests that a small weight loss can be at least temporarily beneficial.

However, the hard truth that most care providers don't want to face is that such weight loss often triggers weight cycling, which is a strong predictor of greater weight gain over time and which may also increase the risk for other health problems.

What care providers don't want to acknowledge is that even modest weight-loss attempts are basically a game of Russian Roulette, where high BMI people balance the possibility of temporary health improvements against the strong likelihood of regain and often, worsened health in the long run. 

While many people of size are happy to pursue weight loss, many with a strong history of weight cycling are not willing to risk further bouts on the yo-yo merry-go-round. This choice, too, must be respected. Improving the health and outcomes of obese people should not rest solely on weight loss.

Deal with the reality of the complexity of obesity and develop some alternative strategies to lower the cesarean rate in this group besides demanding weight loss.

Consider Other Solutions

If weight loss is the only tool in the toolbox for lowering the cesarean rate in obese women, then evidence suggests it's a doomed effort since most women don't lose weight permanently and many become pregnant unexpectedly without losing weight first. Cesarean prevention needs other tools in the toolkits besides weight loss.

Most importantly, caregivers need to acknowledge that how obese women are managed during labor significantly impacts the resulting cesarean rate. 

They need to actively pursue programs that try to reduce the cesarean rate in this group, and once they do, they need to evaluate the results of those programs to see if their efforts actually work. They also need to acknowledge the impact of their own beliefs and biases on cesarean rates and any intervention to reduce them.

Sometimes improvements may be less about the actual intervention itself and more about the providers' belief that it will improve outcome, which then changes their surgical threshold or use of other interventions.

For example, some studies have shown lower cesarean rates in obese women who gain less weight during pregnancy. The question is whether this is a real effect of lower weight gain itself, or whether the woman's lower weight gain then changed her provider's threshold for intervention. Caregivers are usually not blinded to a woman's weight gain; they may manage those who gained more weight with greater interventions and a different surgical threshold than those who gained less weight.

A similar effect may be true for those who manage to lose weight between pregnancies. Is it really the weight loss that makes a difference or is it the provider's perception of lower risk and therefore less use of interventions?

Providers' beliefs about fatness influence their management of fat women, and that in turn influences the cesarean rate. These factors must be untangled carefully in research if outcomes are to be improved.

The British and German studies discussed above show that cesarean rates do not have to be excessive in very obese women. It's time that a serious effort is made to actually lower c-section rates in higher-weight women, especially where they are particularly excessive. The good news is that a few providers have started to ask the important questions on how to do this.

Start with the Basics

To start lowering the cesarean rate for high-BMI women, care providers first need to start applying the lessons they have learned in reducing cesarean rates in average-sized women to the management of women of size.

For example, the American College of Obstetricians and Gynecologists (ACOG) and the Society for Maternal-Fetal Medicine (SMFM) recently recommended several steps to help lower the primary cesarean rate, including:

• Allowing prolonged latent (early) phase labor
• Considering cervical dilation of 6 cm (instead of 4 cm) as the start of active phase labor
• Allowing more time for labor to progress in the active phase
• Allowing women to push for at least two hours if they have delivered before, three hours if it’s their first delivery, and even longer in some situations, for example, with an epidural
• Using techniques to assist with vaginal delivery, which is the preferred method when possible. This may include the use of forceps, for example
• Encouraging patients to avoid excessive weight gain during pregnancy

These steps are widely acknowledged as helping to lower cesarean rates, but somehow are rarely applied to women of size when they labor (except, of course, the advice to avoid excessive weight gain, which women of size hear constantly).

The first step towards lowering cesarean rates in obese women is to allow more time in labor as long as mother and baby are doing well. 

Most cesareans performed on high BMI women are done in the first stage of labor, not once these women reach the pushing stage. Studies have shown that labor is often terminated earlier in women of size, sometimes before active labor is even really achieved, and that more patience in labor may be particularly important with obese patients.

One famous VBAC and obesity study, for example, found only a 13% VBAC rate in women over 300 lbs. and has been widely used to deny VBACs to women of size. When you look more closely at the data, however, you see that nearly all these women had their VBACs induced (which decreases the chances of success) and that their trials of labor were terminated at an average of 4.5 cm of dilation, which was barely into active labor even by the definitions of the time (4 cm). By the new guidelines, they wouldn't even have been considered in active labor. The providers paid lip service to the idea of VBAC in these women but barely gave them a chance to really labor.

Happily, a few researchers have begun to encourage allowing more time in labor for women of size. That's a great step in the right direction but we need more than a vague theoretical encouragement. Most providers don't follow the expanded guidelines yet, and particularly not for women of size. Hospitals need to develop accountability programs where they track the labors of high BMI women to see if they are being given adequate time in labor before surgical intervention.

Another important idea is to increase doula utilization among women of size. While the ACOG/SMFM document didn't list doula support in their top recommendations for preventing primary cesareans, they do acknowledge later on that doulas/continuous labor support is one of the most effective and least interventive ways to lower the cesarean rate, stating:

Published data indicate that one of the most effective tools to improve labor and delivery outcomes is the continuous presence of support personnel, such as a doula. A Cochrane meta-analysis of 12 trials and more than 15,000 women demonstrated that the presence of continuous one-on-one support during labor and delivery was associated with improved patient satisfaction and a statistically significant reduction in the rate of cesarean delivery. Given that there are no associated measurable harms, this resource is probably underutilized.

Care providers should be encouraging higher-weight women to hire doulas and helping establish programs for low-cost doula support for those who cannot afford a private doula. Yet many women of size go without doula support, despite consumer-based programs to connect them with size-friendly doulas. Doula support is underutilized by women of size; this is an area ripe for change.

Interventions for big babies are another major factor driving cesarean rates in obese women. In my many years of collecting the birth stories of women of size, I've noticed that many fat women are pressured into planned cesareans or inductions based on dubious fetal weight estimates. These interventions have not been shown to improve the outcome and often worsen it, yet they are still extremely common interventions in higher-weight women.

In one of my favorite parts of the consensus statement, ACOG and SMFM state (my emphasis):

Suspected fetal macrosomia is not an indication for delivery and rarely is an indication for cesarean delivery. To avoid potential birth trauma, the College recommends that cesarean delivery be limited to estimated fetal weights of at least 5,000 g in women without diabetes and at least 4,500 g in women with diabetes...Screening ultrasonography performed late in pregnancy has been associated with the unintended consequence of increased cesarean delivery with no evidence of neonatal benefit. Thus, ultrasonography for estimated fetal weight in the third trimester should be used sparingly and with clear indications.

They stop just short of telling doctors to STOP doing fetal weight estimations late in pregnancy, but they are certainly hinting broadly in that direction. And they are pretty clear that barring a very big baby (~11 lbs.) in a non-diabetic woman (or nearly 10 lbs. in a diabetic mother), doctors should not be performing a cesarean for "big baby." Yet care providers routinely do fetal weight estimations in obese women and then scare them into having a planned cesarean or induction based on the results.

So right there are three major things that ACOG/SFMFM recommend to lower the cesarean rate that probably are particularly applicable to high BMI women. Yet far too often, caregivers apply these recommendations to other women but not to women of size.

It's past time for caregivers to apply their own advice to the management of obese women too.

Re-examine Management Practices of Obese Women

The suggestions from ACOG and SFMFM are good starts, but they don't go far enough. We need a plan of action specific to higher-weight women to reduce cesarean rates in this group.

The problem is that all we have is guesswork to guide us in how to do this. There is NO study that has prospectively studied a strategy to lower the cesarean rate in high BMI women...and isn't that fact alone quite telling?

Given cesarean rates of 50%, 60%, 70%, and even 80% in this group, not to mention the higher complication rates of people of size after surgery, why hasn't this been studied?

Thankfully, a few studies in recent years have made some suggestions by extrapolating from what data we do have. Based on the evidence, my suggestions for lowering the cesarean rate in women of size would include:

• A strong emphasis on preventing the first cesarean, especially scheduled cesareans that occur before labor. There is often an assumption that fat women can't birth vaginally, so an "elective" cesarean is often planned, even in those who are not first-time mothers. But research shows that many higher-weight women can birth vaginally when allowed to labor

• Less early induction of labor unless it is truly medically indicated. As we discussed recently, obese women are often induced at extremely high rates; many of these are based more on fear than on true medical necessity. Research suggests that high induction rates are the beginning of high cesarean rates, and that when induction is controlled for, the differences in cesarean rates are much smaller or disappear entirely. Therefore, reducing non-indicated inductions will probably help reduce cesarean rates in this group

• Dating pregnancies more accurately in women of size with longer menstrual cycles. Many inductions in obese women are related to "postdates" pregnancies. Many of these may not actually be postdates at all because providers did not adjust for a longer menstrual cycle

• When induction is used, wait until the mother's cervix is ripe and ready for labor. Research strongly suggests that obese women are often induced when their cervix is less ripe and that this is linked to the higher failure rate of induction of labor in this group

• Reduction in the overuse of common interventions in obese women, like early breaking of water, early epidurals, and routine pitocin augmentation. For example, some research suggests that keeping the waters intact early in labor may help lower chances for a primary cesarean. Re-examine whether these common protocols for managing labor in women of size actually help or hurt

• Encouraging women of size to stay home longer in early labor, since research shows that coming into the hospital too early is strongly associated with higher intervention and higher cesarean rates. Yet women of size are often hospitalized earlier in labor. Since obese women tend to have longer and slower-moving labors on average, and since doctors often have a lower threshold for surgical intervention in this group, going in too early may be particularly harmful

• Giving women of size MUCH more time and patience in labor. As discussed above, obese women have a slower dilation curve and a longer first stage of labor. They may simply need extra time in labor before surgical intervention

• More utilization of midwifery care for obese women with minimal health complications, since midwifery care has often been shown to lower cesarean section rates. Yet the current trend is to force even healthy obese women with no complications into the care of obstetricians and high-intervention bariatric obstetrics specialty centers. Recognize that many otherwise-healthy obese women have generally good outcomes in pregnancy and can benefit from midwifery care

• Strongly encouraging use of doulas and professional labor support for women of size. As noted above, labor support has been shown to decrease the rate of cesareans in a number of studies. If a woman of size cannot afford her own doula, make low-cost or free doulas available 

• A re-emphasis on the importance of properly-sized equipment like blood pressure cuffs, since miscuffing remains a problem and anecdotal evidence suggests it sometimes results in cesareans, early inductions, or other interventions for falsely high blood pressure

• More attention to preventing and treating fetal malposition in women of size (who may be more at risk for fetal malpositions). The utility of regular chiropractic care in this group should be studied, and more caregivers should be trained in how to turn malpositioned babies during labor, as this has been shown to significantly reduce cesarean rates

• More freedom of movement in labor and utilization of alternative positions in pushing, instead of immobilizing the obese woman in bed. Research shows that a more upright position in labor can shorten labor and lower the risk for cesarean, and alternative birth positions may also help create more space in the pelvis or even help encourage a malpositioned baby to turn

• Encouragement of alternative methods of pain relief, including utilization of immersion in water (many hospitals strongly encourage or require early epidurals in women of size; women of size are not permitted to access birthing tubs in many hospitals)

• Less use of late ultrasounds for estimating fetal weight, as noted in the ACOG/SFMFM guidelines above, because they tend to be inaccurate, do not improve outcome, and have been shown to increase the cesarean rate independent of actual birth weight

• A revival of VBAC access for high BMI women, and more patience during their VBAC "trial of labor." Many obese women are not "allowed" to VBAC or are talked out of it. Even when they try a VBAC, induction is common, which decreases the chance of VBAC and may increase the chance for uterine rupture. In addition, more than half of their VBAC labors are cut short, often before they even reach active labor. More support for a VBAC trial of labor, fewer inductions, and a lot more patience during labor is needed to help reduce the high rate of repeat cesareans in women of size

Summary

Research is clear that while cesareans can save lives when used appropriately, they also present more harm than benefit when used too liberally.

The risks of cesareans are particularly strong in obese women, yet cesarean rates in this group have been reaching unconscionable heights lately. Rates of 50-80% are not uncommon. Although some of these cesareans are medically necessary, it's very doubtful that all ─ or even most ─ of them are.

Most care providers and researchers shrug off the extreme cesarean rates in women of size as a natural consequence of their obesity, and imply that this is simply the price they pay for daring to have a baby without losing weight first. They call for increased weight loss interventions before pregnancy rather than looking more deeply into the issue.

But focusing on weight loss to lower the cesarean rate will not result in much change because of the high failure rate of most weight loss attempts. In addition, it may result in more obesity rather than less for many women. Instead, re-evaluating how obese women are managed in labor can likely make a bigger dent in cesarean rates.

Historically, cesarean rates in higher-weight women were much lower than they are today. The cesarean rate has increased markedly in obese women in recent years, and there is a great deal of variation in the obese cesarean rate between institutions. This means that many fat women can give birth vaginally under the right conditions, and a high cesarean rate is not an inevitable outcome of obesity. It also likely means that there are ways to lower the cesarean rate in higher-weight women ─ if we are willing to study how and make change a priority.

Far too many of the cesareans in women of size today are “iatrogenic”— that is, influenced more by the attitudes and management protocols of the care providers than by the woman’s size. Far too many high BMI women are sectioned before labor even starts, induced before their bodies are ready, or have their labors cut short because of impatience or fear. But research has shown that women of size can give birth vaginally if they are just given a real chance to do so.

With a little research and some brutally honest introspection about management of this group, the cesarean rate in women of size can likely be reduced considerably. A few brave researchers have begun to speak out about this, but others continue to hide their heads in the sand and make excuses.

It's time for care providers to be held accountable for astronomical cesarean rates in women of size. And it's long past time for them to start actively working on ways to lower the cesarean rates in obese women besides focusing on weight loss.

References

Extreme Cesarean Rates in Women of Size

Tenn Med. 2013 Jan;106(1):35-7, 42. Association between cesarean delivery rate and body mass index. Berendzen JA, Howard BC. PMID: 23477241

...Twenty-six percent of underweight and 31.4 percent of normal weight women required cesarean delivery, while 39.1 percent of overweight, 40.8 percent of obese and 56.6 percent of morbidly obese women required cesarean delivery....

Am J Perinatol. 2011 Oct;28(9):729-34. doi: 10.1055/s-0031-1280852. Epub 2011 Jun 9. Extreme morbid obesity and labor outcome in nulliparous women at term. Garabedian MJ1, Williams CM, Pearce CF, Lain KY, Hansen WF. PMID: 21660900

...Using Kentucky birth certificate data...we examined the prevalence of CD by body mass index (BMI; in kg/m2)...CD was most common among women with a prepregnancy BMI ≥ 50 (56.1%)....

Obstet Gynecol. 2014 May;123 Suppl 1:159S-60S. doi: 10.1097/01.AOG.0000447159.35865.07. Perinatal outcomes in the super obese: a community hospital experience. Papp MM1, Lindsay A, Mariona F, Chatterjee S. PMID: 24770057

...Ongoing observational study involving pregnant women with body mass index equal or above 50 kg/m. The study was approved by the Wayne State University institutional review board...A total of 44.24% were delivered by primary cesarean delivery, 36% by repeat cesarean delivery, and 19% by vaginal delivery...[Kmom note: That's an 80% cesarean rate!] Public health officials and clinicians must join efforts to increase the population awareness of the implications of obesity during pregnancy and the postpartum period. The effect of maternal obesity on the offspring should prompt a community effort to improve preconception health and weight control to improve the maternal and neonatal health.

Am J Obstet Gynecol. 2012 May;206(5):417.e1-6. doi: 10.1016/j.ajog.2012.02.037. Epub 2012 Mar 7.
Maternal superobesity and perinatal outcomes. Marshall NE1, Guild C, Cheng YW, Caughey AB, Halloran DR. PMID: 22542116

OBJECTIVE: The purpose of this study was to determine the effect of maternal superobesity (body mass index [BMI], ≥ 50 kg/m(2)) compared with morbid obesity (BMI, 40-49.9 kg/m(2)) or obesity (BMI, 30-39.9 kg/m(2)) on perinatal outcomes. STUDY DESIGN: We conducted a retrospective cohort study of birth records that were linked to hospital discharge data for all liveborn singleton term infants who were born to obese Missouri residents from 2000-2006. We excluded major congenital anomalies and women with diabetes mellitus or chronic hypertension. RESULTS: There were 64,272 births that met the study criteria, which included 1185 superobese mothers (1.8%). Superobese women were significantly more likely than obese women to have preeclampsia (adjusted relative risk [aRR], 1.7; 95% confidence interval [CI], 1.4-2.1), macrosomia (aRR, 1.8; 95% CI, 1.3-2.5), and cesarean delivery (aRR, 1.8; 95% CI, 1.5-2.1). Almost one-half of all superobese women (49.1%) delivered by cesarean section, and 33.8% of superobese nulliparous women underwent scheduled primary cesarean delivery....

BJOG. 2011 Mar;118(4):480-7. doi: 10.1111/j.1471-0528.2010.02832.x. Epub 2011 Jan 18. Planned vaginal delivery or planned caesarean delivery in women with extreme obesity. Homer CS1, Kurinczuk JJ, Spark P, Brocklehurst P, Knight M. PMID: 21244616

OBJECTIVE: To compare the outcomes of planned vaginal versus planned caesarean delivery in a cohort of extremely obese women (body mass index ≥ 50 kg/m(2))...Five hundred and ninety-one extremely obese women delivering in the UK between September 2007 and August 2008...This study does not provide evidence to support a routine policy of caesarean delivery for extremely obese women on the basis of concern about higher rates of delivery complications, but does support a policy of individualised decision-making on the mode of delivery based on a thorough assessment of potential risk factors for poor delivery outcomes. [Kmom note: The cesarean rate was 30% in women with a BMI of 50+ who were allowed to labor.]

Lowering Cesarean Rates in Obese Women

J Midwifery Womens Health. 2014 Jan 8. doi: 10.1111/jmwh.12073. [Epub ahead of print] Intrapartum Management Associated with Obesity in Nulliparous Women. Carlson NS, Lowe NK. PMID: 24400789

...Nulliparous obese women are at higher risk for unplanned cesarean birth when compared with their normal-weight counterparts, and much of this increased risk is associated with labor management differences...Intrapartum interventions used significantly more often for healthy, obese nulliparous women when compared with normal-weight women were induction of labor, augmentation of labor, and cesarean birth. It is unclear if assisted vaginal birth occurs more frequently among obese women. Epidural anesthesia, artificial rupture of membranes prior to 6 cm of cervical dilation, and early hospital admission were shown in separate studies to be used more often in obese women. Intrapartum interventions were used more frequently in obese women in a dose-dependent manner by body mass index...Implications for clinical practice from this systematic review are that healthy, nulliparous obese women are exposed to common intrapartum interventions more often than normal-weight women. In the absence of evidence on the use of appropriate use of intrapartum interventions in this population, health care providers should carefully monitor management choices when working with healthy, nulliparous obese women.

J Obstet Gynaecol Can. 2011 May;33(5):443-8. Higher caesarean section rates in women with higher body mass index: are we managing labour differently? Abenhaim HA, Benjamin A. PMID: 21639963

BACKGROUND: Higher body mass index has been associated with an increased risk of Caesarean section. The effect of differences in labour management on this association has not yet been evaluated. METHODS: We conducted a cohort study using data from the McGill Obstetrics and Neonatal Database for deliveries taking place during a 10-year period...RESULTS: Data were available for 11 922 women, of whom 2289 women had normal weight, 5663 were overweight, 3730 were obese, and 240 were morbidly obese. After adjustment for known confounding variables, increased BMI category was associated with an overall increase in the use of oxytocin and in the use of epidural analgesia, and with a decrease in use of forceps and vacuum extraction among second stage deliveries. Higher BMI was also found to be associated with earlier decisions to perform a Caesarean section in the second stage of labour. When adjusted for these differences in the management of labour, the increasing rate of Caesarean section observed with increasing BMI category was markedly attenuated (P less than 0.001). CONCLUSION: Women with an increased BMI are managed differently in labour than women of normal weight. This difference in management in part explains the increased rate of Caesarean section observed with higher BMI. 

J Matern Fetal Neonatal Med. 2013 Apr;26(6):547-51. doi: 10.3109/14767058.2012.745506. Epub 2012 Nov 28. Cesarean delivery in obese women: a comprehensive review. Wispelwey BP1, Sheiner E. PMID: 23130683

...A thorough review of the literature indicates that a decreased cervical dilation rate, an increased induction rate, the presence of comorbid conditions, concern about shoulder dystocia, and weight gain in excess of recommendations during pregnancy all may contribute to the high rate of CD in obese women. Obese women are at increased risk of CD-related complications including anesthetic complications, wound complications, venous thromboembolism (VTE), and failure of vaginal birth after CD. CONCLUSIONS: Given the excess risks associated with CD in obese women, and that some of the rationale for the procedure (e.g. slower labor, concern about shoulder dystocia) may not be justified based on current evidence, a reassessment of the threshold at which obese women are recommended for CD is necessary. 

Induction of Labor and Cesareans in Women of Size

Am J Obstet Gynecol. 2014 Aug 6. pii: S0002-9378(14)00814-X. doi: 10.1016/j.ajog.2014.08.002. The risk of prelabor and intrapartum cesarean delivery among overweight and obese women: possible preventive actions. Hermann M1, Le Ray C2, Blondel B3, Goffinet F2, Zeitlin J3. PMID: 25108139

...We modeled relative risks (RRs) and risk differences of prelabor and intrapartum cesarean delivery by prepregnancy body mass index (obese, ≥30 kg/m2; overweight, 25-29.9 kg/m2; normal weight, 18.5-24.9 kg/m2) in a nationally representative sample of 12,297 French women...Risks of prelabor cesarean delivery were elevated only for obese multiparous women. This reflected not only a higher prevalence of previous cesarean delivery (26.4% vs 17.9% for normal-weight women) but also higher risks of prelabor cesarean delivery for multiparous women with no previous cesarean delivery after adjustment for medico-obstetric factors (RR, 1.82; 95% confidence interval [CI], 1.25-2.64)... Increased intrapartum cesarean delivery risks for primiparous women were related to more frequent labor induction (42.6% vs 23.8% for normal-weight women). CONCLUSION: It may be possible to reduce primary and thus repeat cesarean delivery rates among obese women by preventive actions targeting labor induction in primiparous women and prelabor cesarean deliveries in multiparous women. Further research is needed on the impact of limiting inductions on cesarean delivery risks for obese primiparous women.

Acta Obstet Gynecol Scand. 2013 Dec;92(12):1414-8. doi: 10.1111/aogs.12263. Maternal obesity and induction of labor. O'Dwyer V1, O'Kelly S, Monaghan B, Rowan A, Farah N, Turner MJ. PMID: 24116732

...Compared with women with a normal BMI, obese primigravidas but not obese multigravidas were more likely to have labor induced...In obese primigravidas, induction of labor was also more likely to be associated with other interventions such as epidural analgesia, fetal blood sampling and emergency cesarean section. In contrast, induction of labor in obese multigravidas was not only less common but also not associated with an increase in other interventions compared with multigravidas with a normal BMI. CONCLUSIONS: Due to the short-term and long-term implications of an unsuccessful induction in an obese primigravida, we recommend that induction of labor should only be undertaken for strict obstetric indications after careful consideration by an experienced clinician.

BMC Pregnancy Childbirth. 2014 Dec 20;14(1):422. [Epub ahead of print] Pre-pregnancy Body Mass Index (BMI) and delivery outcomes in a Canadian population. Vinturache A, Moledina N, McDonald S, Slater D, Tough S. PMID:25528667

...This study is a secondary analysis of the All Our Babies Cohort, a prospective, community-based pregnancy cohort in Calgary, Alberta...(n=1996)...Spontaneous onset of labour was recorded in 71.2% of women with normal pre-pregnancy BMI, whereas 39.3% of overweight and 49% of obese women had their labour induced. For women with spontaneous labour, pre-pregnancy BMI was not a significant risk factor for mode of delivery, controlling for covariates. Among women with induced labor, obesity was a significant risk factor for delivery by C-section (adjusted OR 2.2; CI 1.2-4.1)....

Am J Perinatol. 2013 Jan;30(1):75-80. doi: 10.1055/s-0032-1322510. Epub 2012 Jul 26. Interaction between maternal obesity and Bishop score in predicting successful induction of labor in term, nulliparous patients. Zelig CM1, Nichols SF, Dolinsky BM, Hecht MW, Napolitano PG. PMID: 22836819

STUDY DESIGN: Retrospective cohort study. Prospectively collected database utilized to determine the optimum Bishop score within each prepregnancy body mass index (BMI) category of term, nulliparous patients undergoing IOL....For the total group (n = 696), Bishop score ≥ 5 was most predictive of success (75% versus 56%, p < 0.0001). Within each BMI category, Bishop score ≥ 5 remained most predictive...CONCLUSION: The optimum Bishop score for predicting successful IOL in nulliparous patients was 5 regardless of BMI class. The higher IOL failure rate observed in obese women was associated with lower starting Bishop scores and was compounded by higher failure rates in obese women with Bishop scores < 3.

Aust N Z J Obstet Gynaecol. 2011 Apr;51(2):172-4. Impact of morbid obesity on the mode of delivery and obstetric outcome in nulliparous singleton pregnancy and the implications for rural maternity services. Green C, Shaker D. PMID: 21466521

...We conclude that morbid obesity is associated with a significantly higher risk of pre-existing medical conditions, developing antenatal complications, induction of labour, caesarean section and greater birth weight. However, there was no significant difference in caesarean section rates when adjusted for induction of labour....

Longer Labors, More Patience Needed

Am J Perinatol. 2012 Feb;29(2):127-32. doi: 10.1055/s-0031-1295653. Epub 2011 Nov 21. Effect of obesity on length of labor in nulliparous women. Hilliard AM1, Chauhan SP, Zhao Y, Rankins NC. PMID: 22105434

We compared the duration of labor among nulliparous women with varying body mass index (BMI). Laboring nulliparous women at >37 weeks were included. First visit BMI was used to categorize weight as normal (≤24), overweight (25 to 29.9), or obese (≥30 kg/m(2))...Duration of first stage of labor was significantly longer for obese versus normal-weight women (26.76 ± 0.77 versus 23.87 ± 0.66 hours; p = 0.024) but not between normal versus overweight women (p = 1.00) or overweight versus obese women (p = 0.114). The cesarean delivery rate was significantly different in the three groups (p = 0.0001), highest among obese (47%) and lowest in normal-weight women (24%). When adjusted for age, hypertension, and induction, the likelihood of completing stage I was significantly less among obese nulliparous than those with BMI < 24 kg/m(2) (hazard ratio 0.73, 95% confidence intervals 0.54, 0.99). Compared with those with BMI < 24, the duration of stage I is significantly longer among obese women, even when adjusted for maternal age, induction, and hypertension.

Am J Obstet Gynecol. 2011 Sep;205(3):244.e1-8. doi: 10.1016/j.ajog.2011.06.014. Epub 2011 Jun 23. Contemporary labor patterns: the impact of maternal body mass index. Kominiarek MA1, Zhang J, Vanveldhuisen P, Troendle J, Beaver J, Hibbard JU. PMID: 21798510

...A total of 118,978 gravidas with a singleton term cephalic gestation were studied. Repeated-measures analysis constructed mean labor curves by parity and BMI categories for those who reached 10 cm. Interval-censored regression analysis determined median traverse times, adjusting for covariates in vaginal deliveries and intrapartum cesareans. RESULTS: In the labor curves, the time difference to reach 10 cm was 1.2 hours from the lowest to highest BMI category for nulliparas. Multiparas entered active phase by 6 cm, but reaching this point took longer for BMI ≥40.0 (3.4 hours) compared to BMI <25.0 (2.4 hours). Progression by centimeter (P < .001 for nulliparas) and from 4-10 cm (P < .001 for nulliparas and multiparas) increased as BMI increased. Second stage length, with and without an epidural, was similar among BMI categories for nulliparas (P > .05) but decreased as BMI increased for multiparas (P < .001). CONCLUSION: Labor proceeds more slowly as BMI increases, suggesting that labor management be altered to allow longer time for these differences.

Eur J Obstet Gynecol Reprod Biol. 2013 Nov;171(1):49-53. doi: 10.1016/j.ejogrb.2013.08.021. Epub 2013 Aug 29. Maternal body mass index and duration of labor. Carlhäll S1, Källén K, Blomberg M. PMID: 24041847

Historical prospective cohort study including 63,829 nulliparous women with a singleton pregnancy and a spontaneous onset of labor, who delivered between January 1, 1995 and December 31, 2009...Overweight and obese women were compared to normal weight women regarding duration of active labor. Adjustments were made for year of delivery, maternal age and infant birth weight. RESULTS: The median duration of labor was significantly longer in obese women (class I obesity (BMI 30-34.9) = 9.1h, class II obesity (BMI 35-39.9) = 9.2h and class III obesity (BMI > 40) = 9.8h) compared to normal-weight women (BMI 18.5-24.9) = 8.8h (p < 0.001). The risk of labor lasting more than 12h increased with increasing maternal BMI: OR 1.04 (1.01-1.06) (OR per 5-units BMI-increase).The risk of labor lasting more than 12h or emergency cesarean section within 12h, compared to vaginal deliveries within 12h, increased with increasing maternal BMI. Duration of the second stage of labor was significantly shorter in obese women: in class III obesity the median value was 0.45 h compared to normal weight women, 0.55 h (p < 0.001). CONCLUSION: In nulliparous women with a spontaneous onset of labor, duration of the active phase of labor increased significantly with increasing maternal BMI. Once obese women reach the second stage they deliver more quickly than normal weight women, which implies that the risk of prolonged labor is restricted to the first stage of labor. It is clinically important to consider the prolonged first stage of labor in obese women, for example when diagnosing first stage labor arrest, in order to optimize management of this rapidly growing at-risk group of women. Thus, it might be reasonable to adapt the considered upper limit for duration of labor, according to maternal BMI.