The heaviness in your legs and arms. The painful pea-like nodules under the skin. The seemingly never-ending inflammation. The emotional weight of your legs never responding to diet and exercise. The tenderness and easy bruising. The mental toll of your body not doing what you’ve been telling it to do for years. If any of these stress points sound familiar to you, you might have a condition called lipedema.
As I reflect upon my own journey with getting diagnosed with lipedema and deciding to seek surgical treatment abroad, I’m passionate about sharing my own experiences with other women who, much like myself, have been desperately searching for answers much of their lives. With June being Lipedema Awareness Month, take a moment to learn eight things about the progressive condition, which could be affecting you or someone you love.
1. Lipedema is a chronic fat disorder affecting primarily women.
The condition—which is characterized as the symmetrical buildup of painful, fibrotic nodules under the skin—presents itself most commonly in the legs, but also can be present in the arms and even abdomen (sparing the hands and feet). Women with lipedema in their legs often have a dimpled skin texture, a tubular/column like shape lacking definition, and cuffing at the ankles. It’s typically described in types (where on the body someone is affected) and stages (how far along the condition has progressed).
2. While you may be hearing about it for the first time, lipedema isn’t new.
First recognized by American Mayo Clinic physicians Dr. Edgar Hines and Dr. Edgar Allen in the 1940s, lipedema is a common yet under- and often mis-diagnosed disorder. It’s estimated to affect 11% of adult women worldwide, yet the number of studies dedicated to understanding lipedema are low. Thankfully, because of heightened education and awareness, research is now beginning to increase.
3. The cause of lipedema isn’t fully understood.
What causes lipedema isn’t known. Though researchers have determined that the condition often starts or worsens at times of hormonal changes such as puberty, pregnancy, or menopause. In addition, it’s known to be inherited, running in families in 20% to 60% of cases.
4. Lipedema is not lymphedema or obesity.
Lipedema is very often misdiagnosed as other conditions like lymphedema or obesity, though it’s distinct from both. Coming to your doctor’s appointment already prepared with knowledge to share with your physician a great way to inform them while trying to secure a proper diagnosis. The Lipedema Foundation’s Clinician’s Guide is a great resource to bring with you to share.
5. Surgery and conservative treatments can help.
Surgery is known as “the gold standard” in treatment for lipedema, because it physically removes it from the body in a way that just diet and exercise cannot. However, there are few specialized lipedema surgeons in the U.S., and insurance coverage, though not impossible, is not simple to secure. Whether you pursue surgical intervention or not, various conservative therapies such as Manual Lymphatic Drainage (MLD), wearing compression, dry brushing, using vibration plates, following an anti-inflammatory way of eating, etc. are all popular methods for finding relief. Some women also have success with GLP-1s, which can help ease the chronic inflammation that comes along with lipedema (though the use of them doesn’t remove the lipedema tissues themselves).
6. While the condition is physical, its mental effects are also strong.
The shame, embarrassment, and sometimes depression that comes along with lipedema often flies under the radar, but is very real. Dramatic emotional challenges exist for many living with lipedema, with many women reporting brain fog, limitations in their professional activities and career choices, and potentially far-reaching consequences for psychological well-being.
7. There is no cure for lipedema.
Even if you have lipedema surgically removed from your body, you will still always have lipedema. But that doesn’t mean there isn’t anything you can do. Being empowered with the knowledge of having the condition is incredibly validating, and can consequently help guide you toward lifestyle choices that improve symptoms, slow progression, and improve your overall quality of life.
8. You’re not alone—resources for support exist.
Many doctors are still catching up with what lipedema is, making it tough for many women with lipedema to secure a proper diagnosis. Thankfully, resources such as the Lipedema Foundation’s Patient Self-Advocacy Guide are a powerful tool, along with community support from local online groups like Lipedema Michigan, which often sees events like local meetups and talks with physicians like Dr. Celia Egan from true. Women’s Health (from whom I secured my own lipedema diagnosis almost two years ago—thank you, Dr. Egan!).
Ultimately, talking to your doctor about your symptoms is a powerful first step towards a diagnosis and getting answers. If you feel like you’re not being heard, don’t be afraid to find another physician who truly listens.
Raising awareness of this common condition can not only help improve outcomes for women living with lipedema through increased education and understanding, but also increase funding for research, hopefully leading to better treatment and earlier diagnosis for women everywhere.
Written by Sarah Suydam, Managing Editor for West Michigan Woman.
