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Joachim Zuther, Lymphedema Specialist. Read more
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A Closer Look at Lipedema and the Effects on the Lymphatic System

 

Lipedema is characterized by symmetric enlargement of the limbs, generally affecting the lower extremities extending from the hips to the ankles secondary to the deposition of fat; upper extremities are affected in 30% (1) of the cases.

Lipedema is not rare and not caused by a disorder of the lymphatic system, but is commonly misdiagnosed as bilateral lymphedema, extreme cellulitis, or morbid obesity.

Most commonly used synonyms for lipedema include:

  • Adiposalgia/Adipoalgesia
  • Adiposis dolorosa
  • Lipalgia
  • Lipomatosis dolorosa of the legs
  • Lipodystrophia dolorosa
  • Painful column leg

This condition almost exclusively affects women; according to an epidemiologic study by Földi E. and Földi M.(2), lipedema affects 11% of the female population, and literature suggests that lipedema is associated with extensive hormonal disorders or liver dysfunctions if present in males.

Lipedema is a painful fat disorder and if left untreated can cause multiple secondary health problems, to include mobility issues and lymphedema. The quality of life, emotionally and physically, for individuals affected by lipedema is often decreased due to the fact that the condition is typically dismissed as simple obesity by clinicians unfamiliar with the symptoms.

The underlying cause for the development of lipedema remains unknown; it is thought to be associated with hormonal disorders and can be hereditary with 14% of affected individuals having a family history of lipedema (3). Lipedema can develop early in puberty; however, the mean age of diagnosis is approximately 35.

Lipedema can be diagnosed based on clinical criteria (history, typical clinical features) and by physical examination rather than with diagnostic tests.

Clinical Features:

  • Symmetrical distribution of fat between the hips and ankles, the feet are not involved
  • Ring of fatty tissue overlapping the tops of the feet
  • Tissue has a soft rubber-like feel in early stages
  • Initially, the skin color is normal
  • Typical bulges of fatty tissue on the medial thigh (above the knee and close to the groin) are seen in later stages
  • Small fatty lumps (nodules) within the tissues start to form in later stages
  • In the early stages of lipedema the upper part of the body may be slender
  • Weight loss does not have an effect on the areas affected by lipedema
  • Swelling (edema) is common in the second half of the day and includes the feet, but decreases in the early stage with elevation and night-time rest
  • Pain, tenderness, sensitivity to pressure
  • Easy bruising

For the purpose of this forum, the additional swelling that develops in the later hours of the day in lipedema is of particular interest and is indicative for the involvement of the lymphatic system if lipedema remains without proper management.

Corkscrew-like appearance of lymph collectors in lipedema

The excessive amount of fatty tissue present in lipedema compresses the lymph collectors of the superficial lymphatic system, which are embedded in the fatty subcutaneous tissue. Lymphangiographic imaging shows that the lymph collectors within the proliferated fatty tissue have a coiled or corkscrew-like appearance rather than passing fairly straight towards the lymph nodes as is the case in healthy tissue. This can result in a reduced transport capacity of the lymphatic system in the affected area.

If the capacity of the lymphatic system is reduced to such an extent that it becomes unable to perform one of its basic functions, the removal of water from the tissues, fluid will accumulate and “real” edema develops in addition to lipedema.
In the initial stages the swelling may recede with elevation and rest, but over time and without adequate treatment (compression, elevation, exercise), the constant strain on the lymphatic system may cause damage to the lymphatic vessels, leading to further reduction of its transport capacity, and swelling may be constantly present.

Lipo-lymphedema

As a result of prolonged overstrain of the lymphatic system, lymphedema may develop secondary to lipedema (lipo-lymphedema), thereby increasing the complexity of treatment. If lipo-lymphedema remains without treatment, it will progress through the same stages as primary or secondary lymphedema.

Treatment

Active treatment for lipedema is necessary because early diagnosis and treatment can determine the individual’s long-term prognosis. Therapy for lipedema can be largely divided into conservative treatments to reduce edema, and surgical treatments such as liposuction.
Main goals in the conservative treatment of lipedema are to decrease pain and hypersensitivity, increase mobility and to prevent, or if already present, to address the edematous component associated with lipedema. If lipedema, or lipo-lymphedema is associated with obesity, nutritional guidance must be provided to reduce weight and avoid further weight gain.

Conservative approaches include complete decongestive therapy (CDT); CDT does not address proliferated fatty tissue, but contributes to the reduction of edema and the prevention of the manifestation of lipo-lymphedema. The various components of CDT also contribute to reducing pain and hypersensitivity to pressure.
In most cases it is necessary to apply a lower level of compression (bandages and compression garments) due to pain and hypersensitivity in the affected areas. Compression garments generally have to be custom-made to the individuals’ measurements. If the use of compression garments is discontinued, edema will return.

Surgical treatment may be considered for patients with lipedema who do not respond to conservative treatment. Liposuction is currently the standard surgical treatment method; however, this procedure may cause bleeding and secondary damage to lymph vessels resulting in persistent swelling. New and more advanced techniques may reduce these risks; however, individuals considering this approach should ensure that the performing physician is experienced and follows internationally established guidelines.

Postoperatively, there is generally an increased tendency for swelling, thus CDT should be initiated or continued within a few days of the procedure.

In the presence of additional lymphedema (lipo-lymphedema) the treatment protocol for complete decongestive therapy corresponds with that for primary lymphedema. CDT shows good long-term results in lipo-lymphedema; however affected individuals need to understand that, although the lymphedemateous component responds well and generally relatively fast to CDT, the lipedema itself, i.e. the reduction of fatty tissue responds more slowly, and sometimes not at all. According to several authors, reduction of the excessive fatty tissue in lipedema is possible if compression garments are worn constantly.

To view educational videos on lipedema, click here

Click here for a PDF Version of this Article

Do you need more information on other topics on lymphedema? Use the “Index” list on the left side of this page and select the article you are interested in. You can also use the “Select Category” window on the right of this page and select the topic you are interested in. Once selected, a new page will load with a number of articles related to the topic you chose. Click on any headline of the articles and the entire article will load up for you to read.

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(1) Herpertz, U. (1995) Das Lipödem. Lymphologie19, 1-11

(2) Földi, E., and Földi, M. (2006) Lipedema. In Földi’s Textbook ofLymphology (Földi, M., and Földi, E., eds) pp. 417-427, Elsevier GmbH,Munich,Germany

(3) Child AH, Gordon KD, Sharpe P, Brice G, Ostergaard P, Jeffery S, Mortimer PS. Lipedema: an inherited condition. Am J Med Genet A. 2010;152A:970–976. [PubMed]

Additional Reading:

http://www.hanse-klinik.com/englisch/Lipoedema.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3309375/

 

103 comments to A Closer Look at Lipedema and the Effects on the Lymphatic System

  • Natalie

    Thank you for this informative article, I really appreciate it. I have lipedema, I am 5 feet 6 inches and 135 and weight reduction has not reduce my lipedema. I also have to have the vnus closure procedure done for venous insufficiency. I plan on having liposuction on my lower legs and ankles. What procedure do you recommend having done first?

    • Joachim Zuther

      Dear Natalie: I regret that I am unable to make a recommendation. This is clearly something your physician has to decide

  • Nicole McKercher

    Hi Dr Zuther,

    Thank you so much for writing such a comprehensive article on Lipedema.

    I am 35 and have had Lipedema since puberty and I live in Toronto, Canada.

    My doctor and now Hormone Specialist that I’m seeing are trying thier best to support me however until I had them google “Lipedema” they had never heard of it.

    Do you know of anyone specializing in Lipedema or even who knows about it in Canada? I will travel outside Canada if necessary but I’m still hopeful I will find someone in my own country that can diagnose and treat me.

    Nicole

    • Joachim Zuther

      Dear Nicole: I personally do not have any contact in Canada. However, I am pretty sure Robert Harris from the Vodder School in Canada will be able to help. His contact is rharris@vodderschool.com

    • Paula

      Contact the Lymphocare.com Centre is in Toronto…
      On Dupont near Spadina…Sharon or Janet should be able to address all of your issues……

      • Nicole

        Thank you so much, I will contact them.

        • Sylvie Giroux

          Dear Nicole,

          I’m in Québec and have Lipedema as well. We have support groups on Facebook one group if from the States, one in UK and one in Australia) with much information and we are in close contact with Dr. Karen Herbst, an endocrinologist from San Diego, who treats women with Lipedema in the States. She collaborate with us and I’m sure that you would gain more knowledge and would know how to deal with Lipedema on a daily basis and that You’d feel less alone if you joined us. If you have a Facebook account look for Lipedema/Lipoedema group of the United States!

          I know of no one in Canada, really knowledgeable about this condition, I was told by the Lymphoedema Association of Québec that they may be a Vascular Surgeon in Montreal that may diagnose lipedema. Contact that Vodder specialist is a good idea. I was diagnosed by one who was trained in Germany too!
          I’m in contact with two other ladies living in Ontario who have it too!

          There is support, Hope to get news from you and maybe see you on Facebook!

          Sylvie Giroux

  • simone

    I am a 50 yr old woman who only recently discovered that I was
    suffering from lipedema which then turned into lipolymphedema after being exacerbated by 2 ovarian cyst surgeries and major knee surgery in my 20s.( it also has effected my upper arms-which also seemed to get worse after surgeries and steroid/cortizone injections for synovitis).The issues with my legs really started to reveal themselves after this and right after puberty. After a 70lb weight loss 3 years ago-I asked my internist, one of the best here in NYC, why my legs were still so large. He answered coldly-“lose more weight”…So frustrated, I went to another doc-who then told me about lipedema…I was infuriated and relieved at thr same time…to realize after a whole lifetime of being told by family, friends and medical professionals that I just wasnt trying hard enough-or being called lazy..etc etc.
    My question to you is-right after being told about the lipedema, I was diagnosed @Johns Hopkins w Ehlers Danlos Syndrome-also misdiagnosed for years.
    I would be interested to know from you-if you know of any connection between Lipedema and EDS..as I know that the EDS effects the collagen and connective tissue/skin/joints etc.
    Thank for taking the time to read my comments and for your efforts on behalf of lipedema/lymphedema sufferers.
    I tried to attach photos-but was unable to w this post. I will try to send them by email.
    Sincerely,
    Simone

    • Nancy Barbour

      Simone,
      Yesterday I got my Ehlers-Danlos Hypermobility Type diagnosis and a year ago I was diagnosed with lipolymphedema after a lifetime of docs asking ME what was wrong with my legs. I find that the EDS makes bandage care very difficult – my hands give out with all the smoothing and rolling. I see that the doc here never answered your post. You are the second person with EDS and lipolymphedema I have learned about. If you see this message, reply to it and we can figure out how to talk. I am 54 yo, 325lbs, in Michigan.

      • veronica rose

        I too was diagnosed with lipedema and now was approved through medical to start lipedema with a physiacal therapist and she diagnosed me with hypermobility disorder and needed to talk to all of the specialists to see if either one contributes to the other.

        • Erika Bueno

          Hi Veronica, I too have been suffering for years with this disease. It’s been misdiagnosed so many times. Can you please advise me on the process of having this covered thru medical? I would greatly appreciate your help.

      • I have to agree with Nancy Barbour I started noticing changes in my legs after my second son. I was 110 lbs before I had him. My problem is no one is Laredo Texas knows how to treat this problem, we do have to certified PA but forget the Drs. Any way I have also mentioned the Ehlers-danlos to my Dr. But no responce. I have been waiting for my Disability 5 years. Once I do get it I plan to go to San Antonio to find a specialist there. This problem started in my late 20 I am now 60.

        • Rache

          Mary,
          and to the others here diagnosed with EDS (or hypermobility)
          Please, I urge you to go to http://www.inspire.com and then to the Ehlers Danlos National Foundation group (EDNF). There is an amazing amount of info and support there! It’s likely there will be members whom live near you…possibly even local in person support groups. There are over 21,000 members in the group. EDS is Not ‘Rare’ it’s simply rarely ‘recognized’….we’re changing that! 🙂

  • Alison

    Dear Dr Zuther

    How liberating it was to read your article! My Lipedema first showed its ugly head at puberty and went on to increase after each pregnancy. Unfortunately I was the victim of a high speed motor vehicle accident 17 years ago in which I sustained gross soft tissue loss of both lower limbs including bone fractures. From the day I was mobilized 12 weeks post accident the lymphodema appeared although I suspect that the lymphodema would have raised its ugly head anyway not too far down the track.

    My youngest daughter (aged 29) has shown signs of lipedema following both of her pregnancies and she is having difficulty in convincing her GP that Lipedema is what the problem is. Is there any other information that she an take to her GP other than your article here that may help her GP understand the condition better?

    • Joachim Zuther

      Dear Alison: At the bottom of the article are links to a number of useful sources on the topic of lipedema. A number of further articles are available online using Google search

  • I treat women in my practice for lipedema. After a cure, they report better quality for life, legs and arms are more flexible and thinner and no pain anymore.
    A client who could impossible walk for 1 kilometre, is now very active and her husband asks her if she wants to slow down when they walk together! She has her life back again.
    The therapy I give is called MapQuassage. It is a new treatment which has its roots in Vietnam.

    This medical massage form knows no aggressive compressions, but by pulling the muscels with small pulls it causes an impact on the body which is to compare with intensive sports.
    It is a new technique and not comparable with other forms of massage.
    The theory is that the metabolism gets a boost and fat and waste substances are broken down and get drained. Rigid blood vessels get more supple and do again what they should do, a perfect circulation and food and oxygen for every cell in the body. Especially in the beginning, the therapy can be painful.

    I know it sounds like a miracle, well it’s not, I see the improvements every day!
    It is a pity there are only a few people who learned this technique, that is because it takes about 2 years to learn it.
    If you want to know more about it, google on the words MapQuassage and Harlingen and feel free to contact me by e-mail.

    Janneke Smitstra, Oncology nurse and MapQuassagetherapist

    • shubha kumar

      i would like to know if there are any mapquassagetherapists around long island ny area or new jersey connecticut area. thank you.

      • Joachim Zuther

        Please use the link “Find a Therapist” on this website to locate a therapist in your area.

    • Tracey

      Hi Janneke. You posted info on a blog about MapQuassage some time ago now. I live in Australia. I am sure there is noone here who dose this type of massage. I have tried looking for it on the net but am not getting very far. My 16 year old daughter was diagnosed with Lipodema a couple of years ago. its been a long haul but I am slowing getting as much info as I can to try to keep this thing at bay. Do you still think this type of massage works? Any info you can give me on this would be so, so appreciated. Is it something that I could try to learn? Would love to hear from you. Best regards Tracey

  • Edwina

    I will look this up. Thank you Janneke, I am going to a holistic dr. See what he can do as far as a blood cleanse.
    Edwina

    • Virginia Fleming

      Where are you located? or someone that does this type of massage

      • Joachim Zuther

        Please click on the “Find a Therapist” link on the top of this page in order to locate a certified therapist in your area. Manual Lymph Drainage (MLD) is not a massage, it is a manual treatment modality

  • Celia

    Dear Dr Zuther

    Lipoedema Patient referred to me by her vascular consultant – she will be attending for CDT. How many daily treatments would you recommend please? She is early to middle stages, aged 54. Painful legs and pinch test positive. Is drainage recommended toward inguinals only? Thanking you in advance.

  • cm taylor

    i have had “lymphedema” since 14 years old – 46 years. the picture in this article looks like my legs! i am vegetarian, eat little trying to lose weight to relieve the symptoms. legs are kept under compression constantly and lately, it doesn’t seem to do much. who’s available in the chicago area to help. my doctor is not familiar with this and none others are. thanks.

    • Joachim Zuther

      Dr. Joe Feldman is located in Chicago – here is a link to a list of doctors specializing in lymphedema, to include Dr. Feldman’s contact information.

  • Iam a Dr especialista in LINFEDEMA AND LIPEDEMA , I CAN HELP PATIENTS WHO HAS THIS PATOLOGY .
    I LIVE IN URUGUAY – MONTEVIDEO.

    MY WEB PAGE IT IS : wwww.circulacionyobesidad.com

    my telehone it is : 0059824015570

  • Rhonda Dabney

    Hi, I am just recently disagnosed with lipedema and I live in Las Vegas, my GP doesnt know about this condition at all. Can someone point me in the right direction here please. I am at a loss on which way to turn.
    Thank you

  • Britt

    Thank you for this article!
    I was diagnosed when I was 26, I’m 163 cm and 65 kg. I’m a small lipedema girl, and I’m blessed to be diagnosed early.
    I find my self having more questions whenever I read something new about lipedema, and my doctor isn’t at any help. Lipedema is so frustrating!
    What is your point on exercise? I do heavy weight lifting and cardio, but avoid all activities that involves jumping, running and stomping my feet in the ground.
    Some say you should do mild exercise, some say we loose muscles 30% faster than normal people?
    When is it time to get liposuction – before or after childbirth?
    I’m so terrified about my future and how my body is going to look!!

    • Joachim Zuther

      Dear Britt: I fully agree with your exercise regimen, this is exaclt what a specialist would suggest. There is absolutely no evidence that an indivis=dual affected by lipedema would loose muscle mass any faster than an individual without lipedema. Childbirth is not a factor to determine the timing for liposuction. Here is an interesting article: http://www.lymphormation.org/journal/content/0602_lipoedema.pdf

    • Onyma

      Hi Britt. I too am small but have lipidema. I’m 165 cm (5’5″), 62 kg (137 lbs), US size 6 (I very easily lost 15 pounds & 2 sizes over the past six months and so far have no issues keeping it off). I eat very healthy, exercise every day, wear 20-30 compression hose (Medi Medium Short), do MLD 3-5x week, see a MLD therapist for 90 minutes every two weeks, and use a Flexitouch (all other pumps hurt far too much). But, I’m concerned bc pain in legs is continuing to grow worse. Compression hose hurt, but I swell w.o them. Would love to talk w. you directly re your experiences and path going forward. Looking forward to your reply. All best wishes to you!!

  • Katrina hawksford

    lipodema suffering but not getting much pain except at night excruciating and I have 8 nurofen plus a night to get relief is there a better tablets.

  • An international team with experts is working to get the word out about lipedema. The website http://www.lipedema-simplified.org has information of interest to those with the disorder as well as research for medical professionals. Events such as webinars are posted with instructions on how to register as well as videos from experts. The website is information only, but may prove useful.

  • Diane

    Thank you for an interesting a well researched article. I have some thoughts to run by you & would be very interested in your own experience & opinion.

    In the last few years I have found a lot of information sources quoting the prevalence of Lipoedema to be between 10% & 22%.

    I understand that many have taken this from information gathered at Lymphoedema clinics, including a Foldi group where11% of the subjects being treated for lymphoedema also had lipedema. Even with a basic knowledge of statistics, it is most obvious that this is NOTHING LIKE saying 11% of the population have lipedema.

    Bearing in mind that it is estimated that around the same figure are quoted as having lymphedema, that would mean that almost a quarter of women have swollen bodies from these conditions, which is highly inacurate. If that were indeed the case there would be much better services for these groups as they would outnumber the number of heart patients or those with diabetes & medical professionals would be very familiar with the symptoms being presented to them, which is clearly not the case.

    I used to work at a training facility for a government establishment where all of the 25,000 workforce (90% women, the majority over 40yrs) would pass through several times in a year. In 12 yrs I only ever saw one woman who looked like she had Lipedema & I am very informed & alert to the symptoms & presentation. If the stats were correct I should have been seeing dozens of people a week & thousands in a year.

    Over the last twenty years I have had attended clinics in various hospitals that cover much of the South East of England & only once were the specialists able to introduce me to another patient with Lipedema as even in the specialist clinics they come across it so rarely.

    General Practitioners usually know virtually nothing about the condition because they see it so rarely. My current GP has worked in several practices & of course met thousands of women but only seen it once before, in a previous surgery.

    I understand the comment people often make about under diagnosis but this seems very unlikely for a few reasons. I have worked closely with literally thousands of women & never come across anyone remotely resembling the symptoms or appearance of this condition. The numerous specialist clinics I have attended (for lymphoedema) over a twenty year period, each covering a wide area of the UK, have only ever had one other patient with lipedema that they have been treating at the same time. The symptoms are very painful & disabling that it seems highly unlikely that patients are not consulting medics about the swelling, pains, infections & mobility issues.

    All of this just does not bear out the 11% statistic & I would be very interested to hear your comments and how often you come across Lipedema in the general population.

    Best regards
    Diane

    • Joachim Zuther

      Diane – in my experience, the numbers offered by the Foeldi group is quite accurate and even lower than the numbers reported by other sources (http://www.lymphormation.org/journal/content/0602_lipoedema.pdf). Lipedema is very common and it did not surprise me that you have not seen many indivuduals in your training facility. Individuals affected by lipedema tend to stay away from facilities like these.

  • I hope this is ok but wanted to mention there is a support group for Australians. I myself have Lipoedema. This is a link to our website http://www.lass.org.au

    If anyone would like support please send us a message via the contact section on our website.

    Clarissa

  • Samm

    Hi Dr Zuther

    I wondered if you might be able to help me – is there any link between steroids (prednisolone) and lipedema becoming worse? I have had lipedema for over 15 years now, affecting both legs, but after being treated for PMR with steroids it seemed to get worse and also developed on my lower abdomen, I stopped the steroids because of the weight gain associated with them but had to go back on them for a few months when I had a flare up of the PMR – then the lipedema got worse again and also spread to a small patch in my groin!

    I just wondered if there is any link to lipedema getting worse when you use prescribed steroids? I am due to go back to the rheumatology consultant because the PMR is now quite bad and I am very stiff and wanted to know about problems with steroids and if it is worth discussing treating the PMR with other medications instead?

    I know that you cant answer on specific cases but any general information would be most welcome:)

    Many thanks – Samm

    • Joachim Zuther

      Dear Samm – I was unable to locate anything regarding steroids and lipedema in the literature. Personally, I think it is unrelated.

  • Nikki williams

    Dr. Zuther,

    My 10 yr old daughter is showing signs of lipedema. We have been to dieticians. The majority of her weight hasis in her legs. Her skin has stretched so much that there is cracks between her pigmentation. She is always complaining of aches to her legs. I’m just a frustrated mom and nurse looking for some answers. Do you know of any specialists in Iowa or US.
    r

    • Joachim Zuther

      Dear Nikki: I would suggest you contact the National Lymphedema Network (NLN); I am sure they can provide you with contacts in these areas.

  • Veronica Barrington

    Dr. Zuther,
    I was diagnosed with Lipedema three years ago. I have small nodules below my knees. I am a small girl. My legs have never really matched my body. I Have been working out for 15 years, eat healthy. I was curious if everyone with Lipedema goes to the late stages. Can you prevent that from happening? What can I do to control it? My husband and I are wanting to have a baby. Will it get worse? Should I get the massages? Please help!!!

    Sincerely,
    Veronica

    • Joachim Zuther

      Dear Veronica: To date there is no effective treatment available for lipedema. The symptoms of lipedema may progress, or they may be constant without progression. Should you experience the onset of additional swelling in your lower extremities you should start wearing support stockings from preventing the swelling to increase. There are a number of lipedema support groups online as well.

  • Rania

    Dear Dr.

    Today was the first time I ever hear about lipedema. I always simply assumed that I had a pear shaped body and cankles, but the pictures of stage 1 of lipedema that i found on numerous websites are spot on (nothing as severe as the pictures here though). I have not experienced any pain and my discomfort thus far is aesthetic; it is possible that it isn’t lipedema? I live in egypt and we don’t have the best medical system (and no one ever diagnosed me with lipedema, just “fat legs”), in that case what would be the best way to deal with this?

  • Linda

    Dear dr zuther ,
    I have read enough to understand that dieting does not help lipedema sufferers – but I still wonder isn’t there certain food that we should avoid ?

  • hi I have just only a week ago being diagnosed with lipedemia am now 52 excercised and always wondered why didn’t really shift weight from my legs 12 years ago now I was weighing a 98 kg not into fitness at at all even then big legs proberly had it then but didn’t realizr my dad then said to me carol when are you going to loose weight I said I will so went to the local pool joined an aqua aerobics class and within 10 months of hard aqua aerobics workouts by my 40th birthday lost 28kgs kept that of for the next 6 years

    even thou now I know and have been diognozed with it I am now going to loose weight again and participate in aqua again have kept fit by swimming but aqua seems to have shifted and really helped me so I want to encourage you all by doing aqua and its fun to for all ages it sure makes you feel better to carol xxx

  • alce o connor

    Is fibromyalgia associated with lipedema. ..have fibro since 1997….diagnosed with lipedema nov 2012….info please
    Thanks

  • Thank you for such an informative article. I especially like that you say Lipedema isn’t rare, it’s merely not being diagnosed. It’s frustrating when people, including medical professionals doubt that I have lipedema because ‘it’s rare’. It seems that is the only bit of information they have ever heard of the condition, because if they knew any more they would clearly SEE that I do in fact have lipedema (as DX’d by a physician). That is frustrating too, the diagnosis can be made by visual exam and yet patients still go undiagnosed and suffer with the condition and blamed for poor habits being the cause of their obesity.

  • Nancy Dagan

    In a previous blog you mentioned Dr. Huhlevich, associated with Scarborough General Hospital, Toronto, Ontario, Canada as treating patients with lymphedema. He has not taken new patients for a number of years as he feels he has no appropriate places to refer them to. I now go to Dr.Roche-Nagel at Toronto General Hospital. He is a vascular surgeon (as is Dr. Huhlevich) but does have some knowledge of Lymphedema. He has a nurse working for him named Cindy who is very knowledgeable. Can also find other resources in Ontario from the Ontario Lymphedema Society. I am also linked in with two separate closed Facebookk groups where I have received a lot of information internationally. In Quebec Dr. Anna Towers is very knowlegeable and has spoken at many of the International Conferences.

  • Carina Rascher

    Can someone please explain the difference between:
    LIPidema – (I know Lip is Latin for fat) and
    LYMPHedema? Lympf is the body system that disposes the excess liquid. Right? Another factor I am aware of, is that when you press lymphatic tissue it makes an indentation, whereas if you press lipidemic tissue, this does not happen. What I would like to know:
    1. Are the causes the same?
    2. Does a special diet affect both conditions?
    3. Are there blood tests that verify the difference?
    4. If I must drink lots of liquid, is there no danger of even more swelling?
    5. Are bruises (ödeme) common to both?
    I have many more questions, but this is enough for now. I would be very happy to have an answer, Thank you so much.
    Carina

  • Amy

    Do you know of a pediatric specialist for lipedema in miami/aventura/hollywood. Or a pediatric endocrinologist with this experience?

    • Joachim Zuther

      No, I am sorry. Please contact the National Lymphedema Network (NLN), they should be able to assist you

  • Michelle

    Hello Dr Zuther, I am 43. I have not been diagnosed but I think I may have Lipedema. I have always had big calves/ankles even when I weighed under 115lbs. I did have mitral valve repair last January and thought maybe any swelling would go down post op. once I went back to work in May I started having increasing pain in my feet. I am a nurse and I stand constantly. I thought it was just a foot issue. I saw Podiatry, but I wasn’t convinced it was just a foot problem because the pain got worse. so I went to a chiropractor who does acupuncture and massage (including Lymphedema treatment) and he is convinced it is lymphedema. I think it is Lipedema. he didn’t know what it is. I look like the early stage photos I see. I have really sensitive legs. I wear compression stockings but have pain in my feet anyway. I read that it is common with hormone imbalance which I am on HRT and also common after receiving anesthesia. I am going to see Cardiology to rule out anything heart related but I need to know who can diagnose me (or not) in the Virginia Beach area. No one I talk to knows what Lipedema is. Should I have cortisol checked? and go to Vascular specialist? I need a starting point. please help. thank you.

    • Joachim Zuther

      Dear Michelle – not knowing you personally I am unable to give you a definite answer. However, if the swelling is bilateral and symmetrical, it is most certainly not lymphedema. Lipedema appears bilaterally and symmetrically.

  • Ebony

    Hi iv just been diagnosed with lipedema and still awaiting to see a specialist about it. Do you know if there is Lipo suction available for patients in Australia? My legs are quite big now an for years iv tried to loose weight and I would always be so skinny on the too half of my body but my thighs and knees jto the top of my ankles have been really big. Size 12-14 in a top and size 22 in pants.. It’s really hard to find cloths that fit.. an after walking for ages my legs get quite sore because they are so big and heavy. I’m only 26 an I feel I have no quality of life because it makes me so misrable. I want to have a chance of being happy and feel normal, an not have people staring at me for having such fat legs an small waist.

  • Lori storey

    I was wondering if anyone has recently had a monarch surgery or pelvic sling surgery done .i was fine until then now I have developed lipodema. .my doctor keeps telling me I have osteo arthritis and I need to ex cerise more . I have no help at all and it is getting worse .the pain is sometimes unbareable .

  • shelby fleshmna

    After 20+ years of pain and swelling of my leg, finally I found a doctor that told me it was Lipedema. I continue to gain more and more weight. My doctor has me on Metformin, metanx, invokana, talwin, Diamox. I also have fibromyalgia which I take savella, and I have mixed connective tissue disease in which I take another medication for(sorry cant remember the name) I have been taking the Lipedema meds for 2 months now and still gaining weight. Also I have custom hose that I wear. I cant get the manual drainage done due to me working everyday. My questions to you are 1. do you agree with these meds? I feel like a walking pharmacy. and 2. Can the 3 conditions be related? I am 42 years old 5″5′ and 219 pounds. I also am seeing the lipedema developing in my upper arms.

    • Joachim Zuther

      I am unable to comment on your medication. I’d strongly suggest you consult with your physician to discuss these matters

  • Carla renda

    Hi
    I was wondering if u could recommend a doctor in NJ who treats lipedema ?
    I have not found anyone with any k owledge about it.
    Thank you.

  • Teri Gill

    I was recently diagnose with Lipedema. I am trying to fine a dr in Maryland around Baltimore area prefer but I will go else if I have to. This disease explains why I have been overweight. I do eat healthy and exercise a lot. It is a life time struggle. Please help me so I can get this under control. Thank you.

  • I cannot find a doctor that knows anything about Lipedema. I have been dx with Lymphedema and have been getting wraps. Can you help me with finding a dr in South Georgia?

  • Lainee

    I have lipedema/lipoedema and I got information from Dr. Karen Herbst she has a whole page devoted to lipedema, and research papers done by German doctors who have been researching lip for years, and I educated my doctor who now is in complete support of my diagnosis. I went to University of Arizona to see Dr. Karen Herbst who also diagnosed me and she has been an expert for at least 8 years so she is renowned in US. Her recommendation for me is surgery as US just doesn’t provide the care I need and at stage 3 I need a intervention as progression of Lipedema at stage 3 and 4 is dangerous. Germany is light years ahead of us so US has to learn form them, they have been providing treatment for 50 years. They have been successfully doing surgical removable for 20+ years, but there should be an Expert in Lipedema(some are claiming that and are not, (they do not have experience no matter what they say)they are seeing dollars. One wrong move by an trained doctor means lymphedema and worse. So I would be very careful if you hear some doctor out of nowhere say he knows how to do surgery. There is too much to lose make sure doctor has been trained by German expert. I have a list of names and you can go to Face Book and get into Lipedema Sisters USA there is a lot of information. There is a file on doctors across the country that are aware of lipedema and can care for you. Dr. Marcia Byrd is in Roswell, GA she is being trained in August by German expert, Vascular Surgeon Dr. Josef Stutz, who is coming to America to train US doctors as he is overwhelmed by US women going to him in Germany. He is also training at least 3 other doctors in Arizona, New York City, and Maryland. Also may be interested in a Lipedema Conference in Washington DC September 5th and 6th. This is a event that will make a big difference in the USA it will bring a lot of awareness, which is about time!!!

  • Ann

    Thanks for the article, there’s very little to be found on Lipedema online. I was just diagnosed after complaining of swollen ankles I’ve had since my teenage years, I’m 32 now. I am at an early stage now and really want to get help so this does not progress any further. I live in Ireland and there doesn’t appear to be anywhere to go to discuss or treat this. The vascular consultant who diagnosed me recommended compression socks and exercise/ healthy diet so as to keep it under control. That was it really. This obviously affects a lot of women so I’m surprised I’ve never heard of it and also surprised at the lack of professionals around to treat it. I’m going to have to do a lot of research but if anyone in the Uk or Ireland has any knowledge of treatment centres I would be very grateful for any information you could send my way. At least I know now why I’ve always had ‘ cankles’ even when I was skinny!!!

  • Susan

    Hi Ann I have been looking at what’s available for people with Lipedema in the Uk and there’s loads of places including a support group.I was looking for my daughter she lives in Spain where there is nothing.I’m very worried about her,I’m going to tell her to join the support group.I think I found it by typing Lymphatic problems into google.Good luck

  • Erika Bueno

    Im in the same boat as everyone else here. No one is able to reffer me to the right place or the right specialist. I live is Los Angeles, CA and found a doctor in Beverly Hills who claims to be a lipedema expert, his fee’s are over the top and he considers this to be a cosmetic treatment. If anyone has any knowledge of where I can find more accurate answers for this, I would greatly appreciate it. I worry that it may now be creeping up to stage 2 🙁 I called my regular physician, but he has never even heard of this and is unable to give me further advise. I tried the link “Find a Physician” but they were unable to assist me either.

    • Susanne P.

      Hi Erika Bueno

      I moved from Europe moths ago and have Lipodema. I’m living in L.A. and can not find any doctor that knows about Lipodema. Did you find some?

      I would be happy to hear from you.

      Best, Susanne

      • Sassan Kaveh, M.D.

        Dear Susanne and Erika, I am an Internal Medicine physician in Las Vegas. I have recently started treating my patients with a series of novel and effective non-surgical treatments. If you are interested I would be able to see you and go over the options after evaluating you conditions. If you are interested please feel free to email me at AlphaMG@cox.net

    • Christina B.

      Erika, I saw Dr Herbst and she told me to go to Dr. Amron in Beverly Hills. She gave me a list of liposuction doctors, but said that Amron was an artist. She said he was better than the German doctors. This is because I wasn’t very large so the “debulking” wasn’t needed for me. The lucky thing for me, before I was diagnosed, I was getting MLD because my hairdresser told me it was a great way to lose weight and then I married a weight loss doctor. But, even he was baffled by my swelling. He asked several doctors, but it wasn’t until my CLT found Dr. Herbst for me. I waited a year to see her and she told me the only thing I needed to do more was see Dr. Amron. I just finished my procedures with him. So far, I am still swollen, but I can already see some differences. When it comes to treatment, it is worth the investment to go to a good surgeon.

  • Diane

    Hi there Joachim,

    I’ve written before but am wondering if you have the details from the relevant excerpts from the Voldi reference which describes what was found to be 11% & how they reached those findings?

    The training facility I worked at educated all 25,000 at least once every year. This was a predominately female workforce in a wide range of jobs including: finance, accountants, lawers & legal staff, social workers, occupational therapists, residential workers, home carers, libraries, transport, admin & secretarial staff – and many more categories.

    I led a pretty normal life till my late thirties & have worked for the Royal Air Force, Olivetti, Rank Xerox, IF I and for local government, until my early 50’s.

    Are you suggesting that 11% of the entire population (that would be 22% of women) stay indoors as recluses & never go out? If so, everyone would know about it & the treatment facilities would be common & widespread, which they are not.

    Given that percentage I should literally have been seeing thousands of women every year (approx 2 – 5,000) with Lipoedema come through the centre, let alone know many people amongst my friends & acquaintances. I know of NONE!

    If you are a therapist, do you have a waiting list of thousands of people whom you’ll never get around to seeing?

    If you still think 11% of the population or anywhere near it have Lipoedema, then I’d be interested to know where they are hiding themselves & if they are not working or going out into the community to be seen, why do doctors very rarely come across this condition?

    Of the millions of people who would allegedly live within 10 miles of my home, with lipoedema, why have I never seen ONE? If there are over 1 in 10 people affected, why has my doctors surgery only ever seen one other case & why do specialist hospitals I have been referred to, not have enough women (around 3 or 4 patients) to run a support group?

    It just does not compute with people’s experience & the 11% just cannot apply to the general population.

    Best regards
    Diane

    • Opal

      Diane you said:

      “The training facility I worked at educated all 25,000 at least once every year. This was a predominately female workforce in a wide range of jobs including: finance, accountants, lawers & legal staff, social workers, occupational therapists, residential workers, home carers, libraries, transport, admin & secretarial staff – and many more categories.

      I led a pretty normal life till my late thirties & have worked for the Royal Air Force, Olivetti, Rank Xerox, IF I and for local government, until my early 50′s.”

      I live in the US, so I’m not exactly sure what type of training facility you are referring to. I also don’t know how you you see these women. Are you saying that you are a nurse and these women come through your facility to do a physical a least once a year, so you would know if they had the signs of lipeodema? You would be able to see their ankles & fat rolls or deposits? You would talked to them all and they would have mentioned how they always had a bigger bottom than top, and had to shop for two sizes?

      Since most doctors wouldn’t even use the ink to jot down that a patient asked about their ‘fat ankles’ or problem areas they are having trouble losing weight in, how is it that you feel you would know if women are meeting the criteria for lipeodema? Are you a massage therapist where you treat pain in the legs? I know of a few women I strongly suspect have this condition, I know my mother has this condition, but has only been diagnosed with the lymphedema, even though a nurse practitioner & OT specialist honed in on that – but have missed the primary lipeodema, and I am sure that a trip to either the OT/PT clinic or my mother’s lymphedema support meeting would reveal many more.

      With the acknowledgement of people being more over weight and obese, then it will become more evident sooner, but since so many wear pants and fashions to hide our flaws like girdles and spanx, how could you tell from the outside I’m wondering. I’m just curious, because you didn’t clarify how you came to that conclusion in a more specified (visual-data driven) way than you did the first time. I want to know what you’re seeing (and how) that brings you to the conclusion that the estimates for lipeodema are inflated.

      Thanks,
      Just trying to gain perspective, Opal

  • could you please tell me where I can get help to manage the pain in my legs? I am 52 years old! With lower body that is not proportionate to the top and my doc suggests gastric bypass and told me it would help my LIPEDEMA thanks

    • Joachim Zuther

      Dear Patricia: I would strongly suggest you seeking the advice of a trained lymphedema therapist. Please click on the “Find a Therapist” tab on top of this page to assist you in locating a therapist in your area

    • Sassan Kaveh, M.D.

      Hi Patricia, I am a physician in Las Vegas who treats many patients with leg pain/cramps/restless legs and edema. For majority of the people the problem is “Venous Reflux” causing these symptoms. This is independent of the Lipedema. There are several none-surgical treatments such as Radio Frequency Ablation and MOCA therapy which work great. The Lipedema can then be treated differently which I am starting to discover. So google a doctor who treats venous Reflux in your area so that you can at least get rid of the leg pain.

  • DENISE

    Dianne – I’m 49 and had thick legs and puffy ankles since my teens – over the years it has got worse and now its really painful. I went to my doc countless times over the years and was told I was either overweight or it was just where I carried extra weight – no mention of lipodema. I only found out about lipodema following a programme on television – took pics to the doc and he agreed it looks like lipodema – he was to investigate but has yet to come back to me. As such I sent away to Lipodema UK support group and they have sent me information to give to him. My daughter is the same as me (or as I was at her age) so she has it too and I spoke to a friend recently and told her about it and she reckons her cousin may have it. So that is 3 potential people with Lipodema that doctors have not diagnosed. I’d imagine a lot of women have went to doctors who don’t know what it is and just get on with it. It’s so upsetting for me to think that had my doc known of this condition I could have perhaps taken some action to curb the progress – my legs are puffy, swollen, lumpy and very sore. I feel like a freak and so paranoid at folk seeing my legs. But at least now I know what it is I can really focus on getting some sort of healthy eating and sticking to it and doing exercise – especially aqua aerobics which seems to be popular

  • Ani

    Hello,
    Does anybody know of a surgeon in the uk who performs liposuction for lipodema ?
    Please help as I have just been told I can’t have an operation on the nhs.

  • Tia

    First of all, Thank you for creating this article. I’m 40 years old and was diagnosed with lipedema this month. I’ve been in the military for 22 years and have heard the same story and seen several nutritionists who said the same ole thing….diet and exercise….after doing that for 24 years, it didn’t work. After one week of CDT therapy, I’ve lost over 10 inches in my legs and the swelling has decreased 🙂

  • Opal

    Joachim Zuther,

    Thank you so much for this article. I will now be able to advocate much better for my mother who is 65, black, diagnosed with only lymphedema, but in fact has lip-lymphedema. I know this from the symmetry, the rolls around the inner knees, and ankles – despite some swelling in the feet, the overlap is well defined. When she first was experiencing the swelling, she had no pitting, and the swelling in the feet would be less at the end if the day due to compression if shoes and circulation from walking throughout the day. I am sue she has stage 3-4. She is 60 cm and 136 kg, needs a knee replacement bi-laterally and has metabolic syndrome with diabetes, hypertension and kidney impairment.

    She has had some improvement with compression therapy, but I don’t think we understood the other components of CDT, but will work on them again as she has experience a rebound when we couldn’t afford new daytime flat knit garments (as the insurers do not cover them in the US, and we weren’t told she would need new ones every 6-12 months- nor the high cost for custom garments). Bariatric surgery is not being considered, but I would love it if she could receive the WAL liposuction treatment, since the weight is causing so much bowing of her legs in addition to the terrible strain on the knees.

    I will be putting together packets for the local doctors in my city, including the plastic surgeons. I may even be appealing to some media outlets to get more information out there so treatment outcomes will be improved.

    The information was invaluable. Thank you so much. Opal

    • Polly

      Opal, I work with Dr Stutz of Germany, who trains surgeons in his WAL surgical method for lipedema. If you know of any surgeons who would like to learn how to treat lipedema, please contact me, and I can send you some information: polly@doctorstutz.com. Thanks for your outreach!

  • Steff

    Hi,
    I’m all new at this, recently diagnosed by my doctor with potential Lipedema and Lymphedema. I’m 34 years old, mother of 3 from Ontario. Are there any doctors our here that specialize in WAL? Anyone you can refer? I’m waiting for my specialist appointment, but as with my diagnosis I had to do all the research myself rather than just being told eat 1200 cal and exercise at least 30mins a day.
    Thanks

    • Joachim Zuther

      I am sorry, I am not familiar with specialists in Ontario. You may want to contact the Vodder School in Canada, they may be able to assist you

  • person

    The second photo does not look like lipedema to me. I am half cuban and my body sort of looks like that. I’ve always had large legs since childhood, and they’ve always swelled after long car trips but return to normal. Now I’m 31. But my point is that some women, especially of cuban descent, have naturally large legs/thighs that resemble that second phot and its not disease. They do go down with weight loss, although they stay larger than the upper body.

  • Thank you for such an informative article

  • Claudia

    Dear Dr. Zuther,

    Thank you for such an informative article. I have lipedema and was treated with liposuction several years ago in Latin America. However, I moved to Australia 10 years ago, and do not know of any doctors who treat this condition. Even general practitioners (who are the first point of call here) are not familiar with it, and see it as mere weight gain. Do you know of any professionals/organisations that treat lipedema in Australia?
    Thank you
    Claudia

  • Fevilee

    I am only 20 years old, my legs and thighs are getting larger although I have large legs/thighs since childhood but now its getting larger. I am worried about this. When I read your article, maybe its lipedema? I have small upper extremities but regarding my lower extremities its large. How can I know if this is really lipedema?

    • Joachim Zuther

      Fevilee: A typical symptom for lipedema are symmetrically enlarged lower extremities. I would suggest you read the articles posted on this page explaining lipedema in more detail. To do that please refer to the index list on the left side panel and choose the article links related to lipedema.

  • Osho Kanodia

    Thank you for such an informative article. I am from India and my partner has Lipedema. She is 25 years old. Can you suggest me any professionals that treat lipedema in India?

  • […] Lymphedema BLOG – posting on the relationship of lymphedema and lipoedema. […]

  • Nadine

    I’m confused. This says lipeodema is not due to a disorder in the lymphatic system but further down it says the underlying cause is unknown. How can they know for sure that the problem isn’t within the lymphatic system??? My symptoms started shortly after birth due to a tramatc birth. Most systems that women start showing during puberty or later I have documentation showing mine started before I began to walk. Now I am in late lipedema,stages and also have lymphadema, even though I was not properly diagnosed till my 40s. Thannk you in advance for your response

    • Joachim Zuther

      The lymphatic system does not directly cause the onset of lipedema. However, lipedema does have an effect on the lymphatic system.

  • Tiffany

    Dear Dr. Zuther,
    I have a good one for you. I am the mother of an awesome 11 year old boy who has been suffering since 2012. In 2012 my son presented with penile and scrotal edema that was dependent in nature. The skin was a red dusky color and he had no pain associated with this edema even upon palpation. We went thru the run around of numerous doctors wanting to say it was contact dermatitis, cellulitis, that I was crazy etc. After this edema continued and went from a dependent state to a constant state my son did have a bought of cellulitis in which the erythema reached his umbilicus. He was hospitalized for a week, IV antibiotics, MRIs and ultrasounds. Despite my attempts to have a punch biopsy performed we were denied. Instead were given a Dx of microcystic lymphangioma of the penis and scrotum, discharged and told they didn’t know where to send us. Using my medical knowledge and research capabilities we ended up 16 hours away from home at a well known children’s hospital that had lymphatic malformation specialities and a doctor performing sclerotherapy. There we found out he did not have any micro or macro cysts that this protein rich lymphatic fluid was basically filling his tissues. We were told to leave it be and let it swell they could not help us. We then ended up 24 hours away from home where agin we were told to leave it be as the edema location was not that of a preferred treatment site. Shortly after I had a friend of mine whom is a general Surgeon do an inguinal lymph node biopsy along with a needle aspiration of a mass that had appeared on my sons groin. Upon aspiration nothing appeared. The node biopsy however showed noncaseating granulomas. Negative for TB, Negative for Cat Scratch and unidentified thru multiple special stains. Then my son became ill, stomach pains, nausea, vomiting, fatigue, weight loss, anal tags and bloody stools! Boom! I said! My son has metastatic Crohn’s disease… I know it. I did my research much research. Ended up at Gastroenterology and met much resistance. But my son was scoped and had aphthous ulcers from his mouth all the way down and a fistula draining near the anus. Still I met resistance when linking the genital edema, the lymph node granulomas and the founded Crohn’s disease. We went thru genetic testing to rule out CGD, all negative. Rheumatology and Immunology agreed with me but Gastroenterology not so much. My son started therapy for Crohn’s in 2014. 6MP failed. Entocort was short lived but showed some improvement to the edema, we moved to remicade with 5asa, supplements, etc. Once off entocort the edema returned to baseline. After two horrific bouts of increased edema, erythema and pain in 2015 my son was put on a tapered regimen of prednisone for 14 days by his PCP and it was the first time since 2012 the edema was completely resolved! His GI doctor however did not like this and took him off the prednisone and the edema returned and now started to effect the pubis as this is where he had the most erythema prior to the steroids. The edema is now painful, especially upon palpation and includes the pubis, the penis and scrotum and bilateral inguinal folds are painful with palpation. His GI doctors perspective is to treat the gut and since current therapies have reduced GI symptoms that’s all that matters. I disagree. GI sent us back to urology where we began in 2012 who said it’s a GI disease, the inflammatory process and its effects are that if a GI disease and GI needs to treat it. Back to GI and he disagrees. Recently we went for a second opinion in which they as well agreed with the edema resulting from the granulomas which resulted from the inflammation of his Crohn’s. Because of my documentation and pictures of the edema, symptoms, treatments and effects over the years we were able to help these doctors diagnose another boy with the same edema early. His punch biopsy showed the granulomas, his scopes were positive and the early intervention resolved the edema. My son not so lucky. We have added Methotrexate to his regimen with little to no resolve. Because our insurance allows us to see only certain doctors and all other doctors in their plan are associated with his current GI doctor none of them will take my son as a patient and the ones who did agree they would only approve for a one time second opinion we are stuck with this GI doctor. After adding MTX the edema however seems to have reverted back to a more dependent state but has not resolved. Any input or ideas? I would greatly appreciate any help with this matter.

    • Joachim Zuther

      Dear Tiffany: First, let me clarify that I am not a MD, I am a PT, specializing in lymphedema management. Therefore, i would limit my comment to the swelling of the exterior genitals your son is experiencing. If the swelling is lymphedematous, it can certainly be treated by a trained and certified lymphedema therapist with experience in genital lymphedema. You should consider consulting with a lymphedema therapist; in order to locate a treatment facility in your area, you may use the “Find a Therapist” button on top of this page.
      All the best!

      • Tiffany

        Thank you. Used the tool no one in our area but someone in the area that we recently went for our second opinion.