When I was diagnosed with lipedema, I had so many questions. I was lucky enough to get diagnosed by one of the foremost experts on lipedema, Dr. Karen Herbst, and get many of my questions answered.
That was in 2013, and there was not as much information on the internet as there is now–not by a long shot.
Today, there’s so much more information online.
There are foundations, and researchers, doctors who are more aware of this condition, lipedema Facebook groups, and even lipedema influencers, models, and more.
With all this knowledge now available, it can feel a little like “information overload”, leaving you feeling overwhelmed.
This condition isn’t as complicated as it feels at first. It IS manageable with a little knowledge under your belt.
So, with that in mind, I’ve tried to cover all the main questions people seem to have when they get diagnosed or suspect they have lipedema.
What is lipedema/lipoedema/lipodem?
According to recent science and Dr. Karen Herbst, lipedema is a loose connective tissue disease that specifically affects the adipose (aka fat) tissue, as well as the vessels within the body. It comes from lipid (fat) and edema (fluid) and literally means fat with fluid. There is typically an accumulation and disproportionate storage of fat and fluids.
How do I know if I have lipedema?
Weirdly, lipedema is one of the few conditions that can present in a way that once you know its symptoms and what it looks like, can easily be determined personally, even before an official diagnosis.
As a member of several lipedema groups and continuing to get educated personally, here are some common symptoms and not-so-common symptoms that seem to be our norm:
- Size disproportion, bigger bottom vs top of body – sometimes extreme
- Larger hips and/or thighs or “thick thighs”
- Column-like legs with very little curve or definition
- Thick calves and/or cankles or ankle cuffs
- Normal hands and feet
- Thicker upper arms with “bat wings”
- Nodules, lumps or texture like a bag of beans under the skin
- Spontaneous, unexplained bruising in legs
- Heaviness in legs, particularly when walking
- Thicker legs that do not really reduce with diet or exercise
- Feeling swollen or thick in the legs
- Aching/sore legs and/or arms
- Sensitive legs with any pressure
- Brain fog
- Chronic throbbing pain in legs
- Leg swelling that does not reduce
- Easier to gain weight than to lose weight
- Legs that appear malformed, disfigured or misshaped
- Expert at hiding legs from the world
- Reluctant or refusal to wear swimsuits in public
- Self-conscious of leg difference from others
- Difficulty losing weight even when very compliant
- Friends and others seem to lose weight faster even on the same diet
- Expert at all of the diets on the market by personal experience
How do I get a diagnosis?
Getting lipedema diagnosed by a doctor can feel challenging as many doctors are still not aware of lipedema despite the fact that it is estimated to affect 11% of women.
What are the different stages of lipedema?
There are officially 4 stages, but there are also doctors who don’t really follow that because people can be a blend of two stages as well as present differently from person to person.
Additionally, Stage 4 is defined as a person who has lipedema and lymphedema. The problem is that there are people who are Stage 1 or Stage 2 who also have lymphedema and do not look like the photos in the link below for Stage 4.
Per the descriptions of lipedema stages, I’m a Stage 4, but I’m not. I’m more accurately a Stage 2 with lymphedema, or as we call it, lipolymphedema.
A recent interview with Dr. Karen Herbst indicated that this is being looked at to be revised and that there may be just the 3 stages as the main ones, and then add “with lymphedema” (aka lipolymphedema).
Here are more details and a visual look at the Stages of Lipedema.
Can you lose weight with lipedema?
Yes. And No.
There’s a number of women who have lost weight (myself included) with lipedema. However, it can be difficult and it’s important to understand what affects lipedema so that it can be treated effectively.
So, regular fat can be lost through diet and exercise, but the lipedema fat will still be there and is unaffected by either.
For example, when I reached my ideal weight of 150, my thighs were still bulging out, my knees were still undefined and my calves were still bigger in proportion to the rest of me, and I still felt the need to hide my legs in long skirts, layers and the like.
That being said, it’s important to note that a diet that reduces inflammation and works for your body is key. Many women with Lipedema struggle with diets and losing weight despite the length of time on a diet and strict adherence. Even with severe calorie restrictions, if the foods create inflammation, there can appear to be no significant loss, or it can be painfully slow and disheartening.
I’ve detailed my experiences with diet here.
Can Lipedema be cured?
First, let me say that I am not a doctor or a specialist. None of this is intended as medical advice and is simply based on research that I’ve gathered.
So, it has been generally agreed among medical authorities that lipedema can not be fully cured. However, there are specific therapies that apparently have reversed lipedema in Stage 1 & 2 completely and managed to reverse Stage 3 in 50-80% of patients.
I will discuss both below.
There is a treatment called Quadrivas Therapy which is a form of very deep tissue massage delivered exclusively in the Netherlands at this time that gets stunning results and claims to completely reverse lipedema in many women. It is a whole-body massage that lasts between 1.5 to 2 hours and is done 2-3 times a week. It’s so deep that the therapists require extensive training and stamina, and the patient requires a healthy dose of resolve.
Their results are so impressive that as of June 2020, they are booked beyond capacity and unable to service any patients who travel from abroad.
Anyway, there was a study with Dr. Karen Herbst on Quadrivas Therapy that was conducted in the US and the results were significant. I’ve linked to the video of a talk delivered by Dr. Herbst that covers the Quadrivas Therapy study results and even shows the massage treatment. in action. The video is only 10 minutes and so worth watching.
AND in a recent interview with Dr. Herbst, in the Q & A section, she stated that she observed that lipedema could be improved and/or reversed with deep tissue therapies (such as Quadrivas Therapy and even deep tissue massage tools).
Lipedema lymphatic-sparing liposuction surgery has also been regarded as a possible cure for lipedema in some patients. This has generally been more successful with Stage 1 and Stage 2 lipedema patients, and helped improve Stage 3 patients, but has not been consistent across the boards as a permanent stand-alone solution. It depends on the individual patient’s health, lifestyle, and the skill and methods of the surgeon performing the procedure.
NOTE: Lipedema liposuction is NOT the same as traditional liposuction and should NOT be done with a conventional surgeon who doesn’t have experience with lipedema. This is really important for the health and safety of lipedema patients.
In summary, managing lipedema requires some know-how and understanding, coupled with the dedication to apply the treatments and therapies in daily life–some of which may result in the reversal of lipedema and improved quality of life.
How do you treat Lipedema?
There are two methods of treatment of lipedema: conservative (non-invasive and more wholistic) and surgical. I’m going to discuss both.
Obviously, I’m not a doctor or a specialist, just a woman diagnosed with lipedema who is obsessed with gathering useful, proven methods of making our lives awesome and (hopefully) kicking lipedema’s ass in the process.
With that in mind, here are some of the treatment methods that many of us are using with success based on suggestions from Dr. Karen Herbst and the results we share with each other in the lipedema community.
Conservative methods of treating lipedema:
- Diet & Way of Eating
- Movement and Exercise (swimming, walking, rebounding, bicycling)
- Compression garments (athletic, off the shelf, custom compression)
- Supplements (Butcher’s Broom, Selenium, Vitamin D & More)
- Moving the lymph (Swimming, Rebounder, Pump, Vibration Plate)
- Manual Lymphatic Drainage (Self massage and/or professional)
- Mental Support (Facebook Groups and Building your community)
Non-conservative methods of treating Lipedema include surgery to remove Lipedema. These MUST be done by doctors who understand and know Lipedema and should not be performed by doctors who aren’t conversant with lipedema, lymphedema, and lipolymphedema.
- WAL Surgery (Water-jet Assisted Liposuction Lymph-sparing)
- Tumescent Liposuction (Also Lymph-sparing)
- Manual Lipedema Extraction Surgery (paired with liposuction and manually extracting larger Lipedema fat nodules)
Note: Lipedema surgery may remove the lipedema fat. However, the conservative methods above are still recommended for long-term help and longevity, especially diet, exercise, supplements, garment compression and surrounding yourself with people who support you.
Is Lipedema, Lipodema, Lipoedema and Lipödem the same?
So, Lipedema is the correct US spelling. However, we’ve also seen it spelled Lipodema in a few places. But, Lipedema is the official spelling in medical studies, journals, etc in the US.
Lipoedema is the common English spelling in the UK, Australia, New Zealand and Europe.
Lipödem is the German word for Lipoedema and refers to the same condition.