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Patient Guide: Treatment of Lipedema and Lipo-Lymphedema

By: Ryan Davey, PhD  
Last Updated: August 16, 2018
Editors: Ryan Davey, PhD and Lindsay Davey, MScPT, MSc, CDT

We are still waiting for research to give us a more complete picture of what causes lipedema, and so not surprisingly, we are also still waiting for a cure. But in the meantime lipedema treatment options exist that can help you control your symptoms and prevent progression to lipo-lymphedema, an advanced stage of the disease that includes the symptoms of lymphedema.

The goal of lipedema and lipo-lymphedema treatment is two-fold:

  1. To improve patient quality of life by managing the symptoms of lipedema.
  2. To prevent worsening of the condition, and the development of an advanced stage known as lipo-lymphedema.

Unsure if you have lipedema? Find out here: Patient Guide to Self-Diagnosing Lipedema and Lipo-Lymphedema.

How to treat lipedema

Background

Your treatment plan depends on your stage of lipedema, how severely you experience your symptoms, your goals, and of course should incorporate current clinical treatment guidelines for lipedema.

Most importantly, you and your health care team need to be on the same page so that you can set realistic treatment goals and avoid discouragement.

In order to set appropriate goals and achieve them you’ll need a clear understanding of:

  1. What lipedema is, and your particular symptoms and stage of progression. Our previous post on self-diagnosing lipedema and lipo-lymphedema describes in detail the symptoms of lipedema and how cumulative physiological changes lead to a worsening of symptoms. Our aim in that post was to create a comprehensive and reliable source of information to help you understand what lipedema is, which symptoms you have (and don’t have) and what stage of progression you are at.
  2. Available treatment options. We’ll discuss these bellow.
  3. The intended goal of each treatment option. We’ll discuss these below.

Available Lipedema treatment options and how they help

Lipedema treatments fall into two general categories: ‘conservative’ treatments that are typically safe and easy to implement, and ‘invasive’ treatments (surgery). These treatment options and how they can help are described in detail below, but for a quick overview see Figure 1.

I) CONSERVATIVE TREATMENT OF LIPEDEMA

Conservative treatments can not cure lipedema, nor can they eliminate your symptoms. Instead, conservative treatments can help you manage your symptoms, and reduce the likelihood of further disease progression.

Each of the treatment options listed below act to help decrease the size of the affected limb, either by reducing the volume of fat (adipose tissue) or fluid. Lipedema is not just a disease of abnormal fat accumulation; it is also a disease of abnormal fluid accumulation.

Lipedema is believed to advance, and its symptoms worsen, in part through a vicious cycle whereby fat deposition and swelling increases the amount of new fat deposition and swelling.  Fluid accumulation can eventually overburden the lymphatic system and culminate in lipo-lymphedema, a condition that combines the symptoms of lipedema and lymphedema. For a more in-depth description, please see our post on self-diagnosing lipedema.

Managing limb volume by reducing fat and fluid accumulation can thereby help reduce symptoms AND prevent disease progression.

Conservative treatments for managing limb volume and how they help:

1. Exercise Therapy
  • Regular exercise is beneficial and is widely recommended.
  • Exercise can work two-fold: first it can increase fluid drainage from the limb by increasing the activity of the venous system, and second it can help reduce the risk of obesity. Swelling and obesity both act to exacerbate lipedema and promote disease progression.
  • Exercise activities should be chosen thoughtfully. Exercise should be (1) enjoyable by the patient so that it can be performed regularly and become routine, (2) do not cause pain or risk of injury. Regular purposeful walking, swimming and cycling can be great options.
2. Weight Loss
  • Weight loss will NOT reduce abnormal fat deposits caused by lipedema. Patients with lipedema can lose weight until they have very little upper body fat, even to the point of being “skinny”, but this has no impact on their abnormal fat deposits caused by lipedema. Lipedema is not the same as obesity, and cannot be cured through weight loss.
  • Weight loss can help PREVENT the worsening of lipedema, in overweight individuals. For a patient with otherwise normal body fat composition, weight loss will have no effect on their lipedema, as described above. However, patients should strive to maintain an appropriate body weight, and lose weight if they are overweight or obese as obesity will exacerbate the symptoms of lipedema and lymphedema. In fact, extreme obesity can even be a cause of lymphedema on it’s own. This is because excess fat accumulation promotes additional fluid build-up (and in some cases also physically deform lymphatic vessels) which contributes to overburdening the lymphatic system and resulting swelling and lipedema symptom progression.
3. Compression garments / compression bandaging
  • Specialized compression garments or bandaging can help reduce the accumulation of fluid that occurs with lipedema, and prevent further accumulation. These garments are the same as those used for lymphedema management, and differ from regular tensor bandages and athletic compression garments. The more swelling you have, the greater the benefit of compression. Since compression therapy is a central tool of lymphedema management, it is particularly effective in treating cases of lipo-lymphedema where normal lymphatic function is impaired and or insufficient to eliminate excess lymph fluid.
  • Compression CAN help reduce feelings of tightness and pain by reducing swelling.
  • Compression CAN help improve mobility. Garments can to some extent help reposition and redistribute the excess tissue in many cases, which can help improve mobility while it is worn (ref 1). Increasing mobility has obvious quality of life and health benefits. In advanced cases of lipo-lymphedema, where swelling can directly contribute to mobility impairment, compression can in turn directly improve mobility.
  • Compression CAN help prevent disease progression. Since compression can help maintain smaller limb volume, and increased limb volume exacerbates the condition, it can be helpful in preventing lipedema progression.
  • Compression therapy is most effective when delivered in combination with Manual Lymphatic Drainage, a specialized form of massage.
  • Compression CANNOT reduce the amount of adipose tissue (fat) that is already present.
  • Compression garments are widely recommended. Since compression garments are beneficial while also being relatively easy to implement, and safe, it is a widely recommended treatment tool for managing lipedema.
  • What compression garment would be best for you? We are often asked for advice on buying compression garments. Without seeing you in person we cannot comment on whether or not you would benefit from compression, what level of compression would be optimal, or what shape/type of compression garment might work best for you. For the best advice, seek out a certified combined decongestive therapist in your area who is knowledgeable about lipedema. With that said, I understand that many people live in an area where local expertise can’t be found or is otherwise inaccessible to them. You may also wish to be proactive while waiting for a formal diagnosis. If this applies to you, consider purchasing a more ‘generic’ compression garment that is high-waisted, full-length to the ankle, and offers a low to moderate level of compression. Choosing a garment with these features should reduce your risk of unintended complications and should also be significantly less expensive than purchasing a more specialized or customized compression garment (although it may also be less effective). There are a number of reasonable options that can be purchased fairly easily, for example: the Bioflect Compression Legging which offers a mild level of compression (12-17 mmHg) combined with fabric properties that the manufacturer claims will micromassage superficial lymphatics and reflect far infrared energy back into the leg.
    Bioflect lipedema compression leggings.

    An example of a compression garment that offers a high-waist, is full-length to the ankle, and offers a low-to-moderate level of compression.

    Another easily available option is the CzSalus Compression Legging. This garment offers a bit more compression, although still a fairly moderate 18-21 mmHg, and includes partial foot coverage – which is likely unnecessary. Compression of the foot is certainly beneficial for lymphedema or lipo-lymphedema patients whose swelling typically involves the foot, but it offers no real advantage for classic lipedema patients whose feet are typically unaffected.  If you think you might be comfortable with a higher level of compression, 20-30 mmHg and 25-30 mmHg leggings are also available. Although, if you have never worn compression before it is probably advisable to start with a lower level of compression. [Small disclaimer: if you purchase a garment through one of these links we may receive a very small fee which we use to support our blog, but feel free to look around for a garment that suits you best. Better yet, ask a local therapist for advice before making a purchase.]

  • If you do decide to wear a compression garment, discontinue use immediately and see your therapist if you experience skin sensitivity, irritation, sores, infection, pain or discomfort, or an increase in swelling anywhere in your limb. It is also advisable to wash the garment every day or two. Washing by hand will help it maintain its shape and elastic properties.
4. Manual Lymphatic Drainage (MLD)
  • MLD CAN help reduce swelling. Like compression garments and bandaging, MLD works most effectively on patients with greater levels of swelling. It therefore has little utility for reducing swelling in early cases of lipedema, where excess fluid accumulation is not yet observed and normal lymphatic function is still maintained. MLD is particularly effective in treating cases of lipo-lymphedema, as MLD is a central tool of lymphedema management. It is delivered through specialized hands-on massage by a certified practitioner that acts to draw the accumulated fluid out of the limbthrough lymphatic channels to return it back into circulation. MLD should be delivered in conjunction with compression therapy to help maximize its effect and minimize patient expense.
  • MLD CAN help reduce pain and bruising. MLD, especially when delivered with appropriate compression garments / bandaging has been observed to significantly reduce both the pain (ref 2) and susceptibility to bruising (ref 3) that is typical of lipedema. Even in early cases of lipedema where MLD is not needed to reduce swelling, MLD still appears to relieve pain and promote well being (ref 1 and 4). The authors of one study commented: “There is hardly a therapy prescribed by physicians that promotes well-being more and is therefore demanded vehemently by patients.” (ref 4).
  • MLD CAN help improve mobility in advanced cases of lipo-lymphedema, where swelling can directly contribute to mobility impairment.
  • MLD CAN help prevent disease progression. At more advanced stages of lipedema, where noticeable swelling is present, MLD can help maintain smaller limb volume. Since increased limb volume can lead to a worsening of the condition of lipedema, MLD can be helpful in preventing its progression.
  • MLD CANNOT reduce the amount of adipose tissue (fat) that is already present.
  • MLD works hand-in-hand with compression, by reducing limb volume before compression garment fitting, in order to maximize the benefits of the compression. Compression garments are particularly effective at preventing additional fluid accumulation, but are also effective at reducing existing swelling, depending on the level of compression used. Compression garments are composed of “short-stretch” materials that have a range over which they stretch before becoming inelastic, and they are sized for each person to suit their particular limb’s needs.  It can be detrimental to size them too tightly, and not effective if they are sized too loosely. Patients are therefore measured for their compression garment(s) ideally after a fluid reduction phase of treatment, involving Manual Lymphatic Drainage massage.
5. Intermittent Pneumatic Compression (IPC)
  • IPC is a device that reduces limb swelling. It is primarily prescribed for the treatment of venous insufficiency, and sometimes lymphedema. It is basically a sleeve with air chambers and a pump system that applies sequential air pressure to squeeze the limb and push fluid out of it.
  • It may help reduce swelling for some lipedema patients where noticeable swelling is present. It can be used by some patients as a supplement to compression, MLD and exercise therapy, if these are deemed insufficient.
  • Use of this device should be assessed on a case-by-case basis, as it will not be effective for some patients, or may be too painful for patients who are particularly pain sensitive.
  • There is a risk of complications for some patients. Incorrect use could in some cases lead to swelling in the genitals and fluid cysts (ref5).

II) INVASIVE TREATMENT OF LIPEDEMA

For patients who show no improvement in symptoms with conservative treatment, or who continue to see disease progression, they may consider surgery as an option.

1. Liposuction and Lipectomy
  • Surgery, and in particular liposuction, may be a treatment option for some to reduce the abnormal fat deposits caused by lipedema. It is usually performed in multiple sessions. Following liposuction women will typically benefit from compression therapy and MLD, and should strive to maintain an active lifestyle and manage their weight to help delay the return of the condition. Reports suggest that for as many as 65% of patients, liposuction can decrease the need for ongoing conservative management (ref 6). Likewise, lymphedema liposuction has been shown to be remarkably effective at reducing the adipose tissue buildup that dominates advanced (stage 3) cases of lymphedema, and with appropriate ongoing management, disease re-progression can be prevented.
  • Surgery appears to also reduce the tendency to bruise, and the symptoms of pain with pressure in lipedema patients (ref 7).
  • Surgery can improve patient mobility by removing fat deposits that are physically impairing mobility.
  • Surgery is NOT a cure, and will not prevent further fat deposition. Many patients will revert to their original condition within a few years. Conservative measures described above should be followed to help delay its return.
  • Surgery cannot alleviate the lymphedema component, if present. Lymphedema resulting from lymphatic damage that was present before the operation, will remain afterwards.
  • Surgery can have complications, and you may not qualify to have it covered by health insurance. You should discuss this option with your family physician, including the potential complications, and your insurance eligibility. It is important to note that complications exist, and this may include the possibility of damaging the lymphatic system and developing secondary lymphedema (ref 8).

III) SUMMARY OF LIPEDEMA TREATMENT OPTIONS

Lipedema treatments options and how they work

Fig1: Overview of lipedema treatment options and how they act to reduce symptoms.

 

How NOT to treat lipedema

Diuretics and laxatives are entirely ineffective against lipedema, as is weight loss in patients with otherwise healthy levels of body fat.

Sharing is caring! If you have any questions or comments, please submit them below :)

References:

  1. Reich-Schupke S., Altmeyer P., Stucker M. Thick legs – not always lipedema. J Dtsch Dermatol Ges. 2013 Mar;11(3):225-33. https://doi.org/10.1111/ddg.12024
  2. Szolnoky G., Varga E., Varga M., et al. Lymphedema treatment decreases pain intensity in lipedema. Lymphology. 2011 Dec;44(4):178–182. abstract
  3. Szolnoky G., Nagy N., Kovacs R.K., et al. Complex decongestive physiotherapy decreases capillary fragility in lipedema. Lymphology. 2008 Dec;41(4):161–66. abstract
  4. Meier-Vollrath I., Schneider W., Schmeller W. Lipödem: Verbesserte Lebensqualität durch Therapiekombination. Dtsch Ärztebl. 2005;102: A1061–67.
  5. Wagner S. Lymphedema and lipedema – an overview of conservative treatment. Vasa. 2011 Jul;40(4):271–79.  https://doi.org/10.1024/0301-1526/a000115
  6. Warren Peled A., Kappos E.A. Lipedema: diagnostic and management challenges. Int J Womens Health. 2016 Aug 11:8:389-95. http://doi.org/10.2147/IJWH.S106227
  7. Schmeller W., Hueppe M., Meier-Vollrath I. Tumescent liposuction in lipoedema yields good long-term results. Br J Dermatol. 2012 Jan;166(1):166: 161–68.  https://doi.org/10.1111/j.1365-2133.2011.10566.x
  8. Suga H., Araki J., Aoi N., et al. Adipose tissue remodeling in lipedema: adipocyte death and concurrent regen­eration. J Cutan Pathol. 2009;36(12):1293–1298.  https://doi.org/10.1111/j.1600-0560.2009.01256.x

21 Comments

  1. Michele Whitworth Michele Whitworth says:

    Can u please tell me where i can get diagnosed in ont..(barrie area possible)??

  2. Lindsay Davey Lindsay Davey says:

    Hello Michele,
    I am happy to help. There are about 5 or 6 CDT therapists listed on the Toronto Lymphocare Website for the city of Barrie (under their Find A Therapist link). Also, you could search by city on the Vodder International website, which also lists certified CDT therapists. I hope that helps!
    Sincerely, Lindsay Davey

  3. Sharon Sharon says:

    Could I please have the links to the places you mention above. Im trying to find services around the Ottawa region and or physiotherapists that may specialize or have knowledge of this disease…doctors are no help.

  4. Lindsay Davey Lindsay Davey says:

    Hello Sharon,
    Here are the links to the websites I mentioned:
    http://www.torontolymphocare.com/html/contact.html
    https://www.vodderschool.com/find_a_therapist
    Best Wishes,
    Lindsay

  5. Marianne Marianne says:

    Please refer your patients to learn more a Lipedemaproject.org and fat disorders.org   They have a list of physicians who diagnose and their is about 12-15 surgeons who do lymph-sparing liposuction in the USA.

  6. Stefania Stefania says:

    Can someone please inform me as to what surgeons there are who provide this type of liposuction. Your assistance will be greatly appreciated

  7. Lindsay Davey Lindsay Davey says:

    Hello Stefania,
    It would be a plastic surgeon who you would seek a consultation with, regarding pursuing this form of liposuction. I’m sorry that I don’t have specific names to pass along. Best of luck!
    Lindsay Davey

  8. Louisa Louisa says:

    Is there any evidence that treating chronic venous insufficiency (CVI) through vein ablation can help lipedema? Could CVI – for example, as a result of EHlers-Danlos Syndrome – be a cause of lipedema? 

  9. Gertrude Venene Schnebly Gertrude Venene Schnebly says:

    I have Lypo-Lymphedema,just diagnosed two weeks ago. I have been getting massage for Lymphedema for over a year now. In spite of being meassured for compression garments, they hurt my legs so badly, l have to take them off after just an hour or so, especially when I’m walking very far. I love to walk, in spite of the legs and feet pains I have had most of my life, from Fibromyalgia, since early childhood and Diabetes type 2 and osteoarthritis as I have aged. I will be 73 on May 2nd and still walk several miles a week even in Anchorage, Alaska snow, and in the malls, when it’s to cold.

  10. Lindsay Davey Lindsay Davey says:

    Hello Gertrude,
    Thank you sincerely for sharing your story, and I apologize for the lengthy delay in my reply – we were having issues with our comments forum in the early new year, and I see now that I missed some comments at that time. Your comments about the compression garments being painful on your legs is helpful, as with lipo-lymphedema this can be a factor. We always recommend wearing them a bit more each day to increase tolerance, until your body gets used to them. That, or do speak to your fitter about whether there are adjustments that could be made to make them more comfortable. I’m thrilled to hear that you love to walk, that bodes very well for the long-term management of lipo-lymphedema, particularly with diabetes and osteoarthritis also at play. I’m pleased you have the massages in place, which should help maintain your status, and with any luck, improve the swelling component. Wishing you the very best Gertrude. Sincerely, Lindsay Davey

  11. Ryan Davey Ryan Davey says:

    Interesting question Louisa. Any condition that increases the fluid in an affected limb would be expected to worsen lipedema symptoms and promote progression, this would include CVI. The underlying cause of lipedema seems to be inheritable, and appears to include a vascular dysfunction component that predisposes the individual to developing the disease. So CVI (as a result of Ehlers-Danlos Syndrome or otherwise) might be able to initiate onset of the disease in people who are not yet symptomatic, or make it worse in those who are, but I would not expect CVI to be able to cause lipedema in otherwise normal people.

  12. Linda Robinson Linda Robinson says:

    Thank you for this helpful overview. I was diagnosed with lipo-lymphedema at age 77(2015) and have benefited from bandaging and from learning MLD, which I use in conjunction with donning compression stockings. I have been on a ketogenic diet to possibly reduce lipedema fat, but understand that is a hope only. Do you have any comments on the diet?
    Also, using a pneumatic pump on my legs re-contoured my legs, to thin ankles and bulging calves. My stockings now catch on the bulge and hurt. Thigh swelling limits my mobility.

  13. Ryan Davey Ryan Davey says:

    Hi Linda,

    That’s great that you’ve learned some MLD and consistently use compression, keep it up :) As you know, no data exists to show that dieting (ketogenic or otherwise) can significantly reduce the abnormal fat deposits caused by lipedema. However, the ketogenic diet, or any other diet, exercise regimen, or other strategy that works for you to help you lose excess body fat and achieve a healthy weight would be expected to provide some benefit to your condition – by reducing the extra fluid burden caused by being overweight. Once you reach a healthy body weight (if you haven’t already), additional weight loss is not likely to be beneficial. In terms of the pneumatic pump, it seems to work (or not) on a case-by-case basis. It can also be too uncomfortable or painful for some patients with lipedema. If you are not getting a good result from it, or if it is causing discomfort, you should consider not using it. As always, it’s best to speak in person with a therapist trained in CDT, they can give you the best advice.

  14. Carrie Lanier Carrie Lanier says:

    I’m almost certain that my 15 yr old daughter has lipedema. Do you know of any doctors that will diagnose her near the Dallas/Fort Worth, Texas USA area?

  15. Julia Julia says:

    My 17 year old daughter has all the simptoms if Lipedema. It just started less then 1 year ago, but it is getting worse each week. Pediatrician doesn’t know what to do. Is there a specialist in Boston (MA) area? Can endocrinologist be helpful?  

  16. Elisabeth Carlsen Elisabeth Carlsen says:

    I got my diagnose in nov. 2017. I’m 64 yo.  
    I really appreciate your information about this disease. 
    I have increasing PRO-INSULIN C-PEPTIDE and steatosis. But my blood sugar is still normal. My endocrinologist has put me on METFORMIN. 
    I would like to know: Is there any genetic testing that can reveal mutations in LIPOEDEMA?

  17. Ryan Davey, PhD Ryan Davey, PhD says:

    Hi Carrie, I can’t recommend anyone specifically, but you could try checking out the lipedema provider directory found on lipedemaproject.org for a doctor in your area. Best of luck, Ryan

  18. Ryan Davey, PhD Ryan Davey, PhD says:

    Hello Julia, I can’t recommend anyone specifically, but you could try checking out the lipedema provider directory found on lipedemaproject.org for a doctor in your area. An endocrinologist knowledgeable about lipedema would be helpful, but endocrinologists in general aren’t specialists in lipedema. You should ideally seek out someone who regularly handles lipedema cases. Often times these physicians are specialists in related fields as well, such as lymphedema, vascular disorders, or endocrinology, but could also be plastic surgeons or general physicians. Best of luck, Ryan

  19. Ryan Davey, PhD Ryan Davey, PhD says:

    Hi Elisabeth,

    It’s great that you are working with an endocrinologist knowledgeable about lipedema. Unfortunately there is currently no genetic test that can reveal your mutation, or confirm your diagnosis. The genetic basis of lipedema is poorly understood, although a hereditary component is suspected (meaning that you may have inherited a mutation in a gene involved). Best of luck, Ryan

  20. Michelle Whear Michelle Whear says:

    Please someone help me find the Drs whom know how to treat and perform surgery on lipedema. I need help and live in Massachusetts.

  21. Hi Michelle,

    Try searching for a doctor in the lipedema provider directory found at this link: lipedemaproject.org/lipedema-lipoedema-lipodem-provider-directory/

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