How To Find a Lipedema Specialist for Diagnosis

Here are resources for you.

Photo by Alexandr Podvalny on Unsplash

“How did you get diagnosed?” This is a common question I get asked by women who need a formal diagnosis to get medical treatment for Lipedema. I can’t sugarcoat this: It’s damned hard to get diagnosed with Lipedema.

For some of us, it takes years to get an accurate diagnosis.

Most everywhere in the world (except Germany), Lipedema is not recognized as a valid medical condition. It doesn’t even have its own ICD-10 code, and all treatment is billed under “lymphedema,” “edema, unspecified,” or other codes related to edema and pain.

However, if you are tenacious enough, you can get yourself diagnosed. It may take a lot of snubs from the medical community and tons of self-advocating, but you can do it!

Here’s What I DON’T Recommend:

Lipedema can not (yet) be diagnosed by imaging or blood work. A Lipedema diagnosis is only accomplished by a clinical examination. The diagnosing physician must know what the clinical presentation of Lipedema looks like. If your primary care physician doesn’t know about Lipedema, don’t waste your time trying to get a diagnosis from them. Instead, find a physician who knows what to look for when diagnosing you.

I also don’t recommend going from doctor to doctor, scheduling appointments with them, only to find out later that that physician is either unaware of Lipedema or doesn’t know what to look for in giving you a diagnosis. It’s a lot of wasted time and money on your end.

Instead, do your footwork on the telephone. Start calling around to the specialists I’ve listed below and directly ask the office if the physician/surgeon there gives Lipedema diagnoses. If they can’t give you a diagnosis, ask them if they know a local doctor who assesses and diagnoses patients with Lipedema. All this footwork takes time but is better than wasting time and money going to an appointment only to find out the doctor doesn’t diagnose Lipedema.

Your first goal is to get into your medical records a diagnosis of Lipedema.

Here are a couple of places to start. If you can, try to stay within your PPO (Preferred Provider Organization) or your HMO (Health Maintenance Organization) so you don’t get dinged for being out-of-network and paying a higher price for your treatment.

For a Lipedema Diagnosis

Check with your local Vein Specialist or Vascular Surgeon

Vein specialists and vascular doctors make many initial Lipedema diagnoses because 20% of Lipedema patients have chronic venous insufficiency. Lipedema also has similar symptoms to venous insufficiency:

“The symptoms of lipedema and venous insufficiency are similar: swelling, heaviness, tenderness, fatigue, discoloration in the calves, easy bruising, and prominent veins. Like lipedema, early-stage phlebolymphedema spares the feet.” ~Dr. Thomas Wright

Always call a clinic first, no matter which specialist you find, and ask if they can precisely diagnose Lipedema.

Physical Therapists who specialize in lymphatic drainage

If you have swelling—lymphedema—your primary doctor can prescribe physical therapy for you. With this referral, find a physical therapist certified in or specializing in lymphatic drainage therapy. Most of these physical therapists are familiar with Lipedema. Call the clinic first to ensure they are familiar with lipedema and can help you get diagnosed.

Although a physical therapist isn’t a medical provider who can formally diagnose you (with medical insurance, it must be a physician), they carry much weight in the medical field. They can also bill insurance under a diagnosis code compatible with Lipedema, note Lipedema in their progress notes, and they may be able to direct you to a specialist who can give you a legit diagnosis.

Pain Management

Lipedema causes quite a bit of pain and is typically misdiagnosed, so you may already be connected to a pain management doctor for ‘other’ pain issues like fibromyalgia, migraines, joint problems, etc. I went to a pain management specialist for quite a long time to get steroid injections in the back of my head for intractable migraines (Yeah, it sounds as bad as it was). If you aren’t receiving treatment at a pain management clinic, call around and ask if they diagnose and treat Lipedema (you may need a referral from your PCP, though).

Dermatology

In more advanced Lipedema, there can be swelling (lipolymphedema). Dermatologists can monitor and treat skin changes. Dermatologists initially diagnose a lot of women with Lipedema.

Endocrinologist, Obesity Specialist, Dietician, or other Nutritional Health Specialist

Although you can’t diet or exercise off Lipedema fat, healthy nutrition with anti-inflammatory foods and a keto/low carb diet can help with inflammation. Many endocrinologists, obesity specialists, and other related nutritional fields may be familiar with Lipedema and how this disease clinically presents itself. Be careful, though. Make sure beforehand that they have a strong knowledge of Lipedema and can make a Lipedema diagnosis, especially obesity specialists, who may tend to guide you towards bariatric surgery instead (bariatric surgery is not considered an effective treatment according to The Standard of Care for Lipedema).

Call Dr. Karen Herbst

Dr. Herbst is the leading physician and pioneer in the United States for Lipedema and Dercums Disease. She is actively diagnosing Lipedema for patients and does virtual visits (depending on the state where you live). Dr. Herbst is the doctor who diagnosed me; she is very thorough. However, you’ll likely have to pay out-of-pocket for her visit, and you may need to visit her in person. If you can finance a visit with her, I highly recommend it.

Plastic Surgeon

Plastic and Cosmetic surgeons are the type of surgeons you’d look for since they typically perform liposuction surgery. However, the type of liposuction needed for Lipedema reduction surgery is even more specialized, trained in methods that preserve the lymphatic vasculature. There is a scarcity of plastic surgeons in the U.S. who perform this type of liposuction. Even fewer will work with insurance (plastic surgery has historically been considered cosmetic, and generally, patients pay out of pocket for cosmetic surgery).

When diagnosed with lipedema, the most crucial step is to call around first and find a comprehensive surgical clinic familiar with the condition. This may take some time on the front end, but getting proper treatment will be worth your while.

It may sound weird, but visit the plastic surgeon's website. Most lipedema specialists have a comprehensive website about their practice. Also, find a Lipedema surgeon you trust. This doctor will change your life; you want to be in good, caring hands.

If you have any ideas or have experienced other ways you’ve been diagnosed or received treatment for your Lipedema, please let me know in the comments!

Take Care,

Michelle