June is Lipedema Awareness month, one in which the Lipedema community focuses (even more than usual) on how to reach women who have lived with this painful and distressing disease. While we’ve seen great strides in awareness, insurance coverage, and slightly greater recognition of this disease in the medical community, we continue to fight an uphill battle as women are underdiagnosed or completely dismissed when discussing their struggles and side effects with their providers.
When dealing with the effects of lipedema, your body can also feel the repercussions of direct impact to your lymphatic and venous circulation system. Both systems together help the body create lymph. Venous disorders like venous hypertension and venous reflux impact these combined systems to create excess lymph production. Having an overwhelmed production can lead to overloaded lymphatic circulation. Both the venous system and our lymphatic circulation utilize passive contractions to clear this fluid from our limbs.
As a result, our team has put together some of the most important and most impactful information about Lipedema, how it can affect your veins, and how to get a proper diagnosis. Read it, re-read it, and share it with the women in your life. Some of the pain we’ve lived with for decades may actually have a life-changing solution!
What is Lipedema?
Despite affecting an estimated 11% of women around the world, Lipedema is not yet widely known. Fat cells, (also referred to as adipose tissue) provide the human body with both cushioning and insulation. Lipedema affects the accumulation of these fat cells in the body, resulting in bulging, irregular fat in the affected areas. The legs are the most commonly affected area, but sometimes spreading occurs in the torso, and in many cases, excessive clustering of fat cells is noticed in the arms as well. Regardless of the affected area, the symptoms are equally debilitating, and unfortunately, these fat cells are equally resistant to both diet and exercise programs.
Unlike Lymphedema or general obesity, Lipedema has a tendency to affect both limbs equally and generally becomes more apparent over the course of time. Lipedema’s progressive nature makes getting a proper diagnosis and treatment imperative and extremely time-sensitive – as the disorder progresses so does the pain, immobility, and discomfort.
In addition to the characteristic disproportionate fat accumulation, there are specific physical signs and symptoms of Lipedema. Do any of the following Lipedema symptoms sound like something you regularly experience?
Lipedema Symptoms Checklist:
☑Tender skin that is sensitive to the touch, feels pressure when walking or climbing stairs, crossing your legs, or sitting for long periods of time.
☑Skin’s surface feels nodular and firm, like beans in a bean bag or rubber balls.
☑Skin’s surface is uneven, with large bulges and valleys up and down. Areas that were traditionally thought of as cellulite are much more dramatic and bulging.
☑Skin’s temperature is relatively cool.
☑Legs feel heavy and tired.
☑Swelling in the affected area (legs, arms), worsening during the day, and better at night after you’re able to elevate your limbs (such as laying in bed).
☑Disproportionate fat accumulation, not affected by calorie restriction. Think extreme “pear-shaped” body.
☑Feet and hands are unaffected by weight gain or swelling. As a result, there’s often a “cuff” at the ankles or wrists.
Lymphatic Issues Occurring with Lipedema
Our lymphatic system has several key jobs to help our body function properly. First, it drains our body cells of any debris that needs to be removed. It also drains any excess fluid our tissues have built up. The lymphatic system also transports any clean fluid back to our blood that needs it. With such an important job for our body, it is critical to understand how lipedema can cause additional lymphatic issues. Individuals with lipedema will notice that their lymph fluids are not properly draining, causing buildup in the legs. This fluid building can be painful and cause additional swelling.
Venous Issues Occurring with Lipedema
Our venous system is made up of deep venous pumps and veins located throughout the legs. These pumps when properly working pump 90% of the blood from the legs. The other 10% of the blood is pumped through a superficial venous system. While this system is typically less important than the deep venous pumps, they are at more risk when lipedema is involved. Blood flow may reverse and flow in the opposite direction; healthy vein valves ensure our blood is flowing in one direction for a healthy system.
Venous Insufficiency & Veno-Lipo-Lymphedema
The symptoms of Lipedema and venous insufficiency are similar. They both cause heaviness, tenderness, fatigue, and swelling. They often both have discoloration in the shins, easy bruising, and prominent veins. In more advanced cases of venous insufficiency, not only does venous lymphedema develop, but a secondary Veno- Lipo- Lymphedema develops. With the overwhelmed lymph circulation, the ability to clear fatty acids from the affected tissue is compromised and a secondary fat accumulation occurs. In many cases, the best way to differentiate between lipedema and venous insufficiency and veno- lipo-lymphedema is to have a specialized standing venous Doppler ultrasound to check for venous reflux.
Getting a Lipedema Diagnosis & Treating Vein Issues
Now that you’ve reviewed the signs and symptoms of Lipedema, determined that you identify with at least some of them, and you’ve familiarized yourself with other commonly related diagnoses, it’s time to find a Lipedema specialist and get tested! Each Lipedema doctor will have their own preferred method of diagnosing their patients and typically will include a physical exam, patient questionnaires, and then additional testing and ultrasounds to further support the physical exam.
Below are the different tests you may experience during this time, and it’s important to keep them in mind as you select your doctor. Moving forward, thoroughness will be your best friend; we highly recommend “interviewing” different Lipedema experts to find someone you trust, someone who can provide at least some of these diagnostic tests, and someone who is well versed in treatment options.
Note: There is no single test to diagnose Lipedema. Tests, however, are important to rule out a related disorder.
Stemmer’s Sign Test
The Stemmer’s Sign is the inability to pinch the skin between the toes or fingers. As mentioned in our last section, Lipedema in advanced stages can be complicated by secondary Lymphedema and may have a stemmer’s sign. This test can help Lipedema experts determine if this is the case for you.
Venous Doppler Ultrasound
A Venous Doppler Ultrasound is a very useful test for the diagnosis of Lipedema. Lipedema has many similarities to venous insufficiency (as explained above), so this can help rule out or confirm venous insufficiency. The Venous Doppler Ultrasound can readily detect venous insufficiency if done properly and by having the patient stand while completing it. Unfortunately, most hospital vascular labs complete Venous Doppler Ultrasounds with the patient lying down, While this is the typical way to find Deep Vein Thrombosis (DVT), it is definitely not a successful method to detect venous insufficiency. A standing venous Doppler ultrasound is a painless, non-invasive, and inexpensive test that provides a lot of useful information about venous circulation. The Doppler ultrasound not only helps determine the presence of underlying venous problems, but it also gives critical information for managing Lipedema. If venous insufficiency is present, it is important that treatment is given as the resulting increased venous pressures can greatly aggravate Lipedema.
This is generally only used in complicated cases, where clinical diagnosis is not clear. This is a nuclear scan that assesses the lymph system. It may come back as normal in patients with Lipedema and may show the characteristic “corkscrew” changes with Lymphedema. In most cases of Lymphedema, lymphoscintigraphy shows delayed uptake. So lymphoscintigraphy can be very helpful to determine if and how significant a role lymphedema is playing in an individual’s symptoms, especially when there are widespread issues of swelling in the body.
Treating Vein Issues
Vein insufficiency and other venous issues can cause your lipedema symptoms to worsen over time. Significant vein insufficiency can cause venous issues that are not superficial such as ulcers. If you are looking into surgical treatment for lipedema, you will need your vein issues to be treated first. Vein issues can cause problems during surgery if blood flow is not working correctly. It can also lead to poor wound healing after the procedure has been completed. The increased risk of blood clots is one factor any surgeon will want to avoid.
Life After Diagnosis
First – congratulations! We know the road to diagnosis is emotionally draining, physically painful, and it can feel lonely and discouraging. The time and research it takes to make it to this point are huge, and you should be proud of yourself and the courage it takes to be your own advocate. Our hope for all women with Lipedema, whether they are our patients or not, is that we can provide valuable tools and knowledge so that more women can make it to this point and take the next step in living a more mobile, healthy, and enjoyable life.
After going through the diagnosis process and receiving a positive Lipedema diagnosis, most patients are relieved, overjoyed, and validated by their endless search. After years of living with the private struggle and knowledge that “something just isn’t right” in their body, putting a name to the issues is a huge win. And after an official diagnosis, there are many different treatment paths available to you! A treatment plan should be discussed and developed between you and your Lipedema doctor, but you can read more about non-surgical and surgical options that we recommend to our patients. While these will always depend on specific cases and patient needs, it can give you an idea of what options may be available to you. Good luck!