Who Makes a Lipedema Diagnosis, Anyway?
The answer isn't a simple one
Hi Everyone,
If you didn’t already know—It’s not easy getting a Lipedema diagnosis.
Most Primary Care Physicians (PCP’s) don’t know anything about the disease and don’t feel comfortable making a diagnosis. There also are very few “Lipedema” specialists in the U.S. who can do an in-depth workup and give you a valid diagnosis.
If a woman is diagnosed, it’s typically a lengthy and exhausting process, seeing many different disciplines and taking years of persistence to figure out what is wrong with her body.
I’ve talked with a few women about how they got diagnosed with lipedema. Every one has a different story. Most have had to go to extreme measures to get a real diagnosis. Some women still aren’t sure if they have Lipedema, or Lymphedema, or both. Many are not treated or even told how to get proper treatment.
With any medical condition, a diagnosis is needed to get treatment. With lipedema, you can go for years trying to manage your condition without being properly diagnosed and therefore not knowing what you’re really dealing with.
I’m a RN and have worked in the medical industry for over 30 years. I’d never heard of Lipedema until about five months ago, when I was trying to find out what was happening to my body. And I didn’t find out from the medical community. I learned about Lipedema from a writer who also has the diagnosis.
When I talk now with medical professionals—doctors, nurses, dietitians, etc.—most have never heard of the condition (the exception to this is Physical Therapists). Others will think I’m talking about lymphedema. And even though some have heard of lipedema, they don’t know how to treat it beyond compression and massage.
To get a real diagnosis takes a lot of personal effort. This is why I will constantly tell you that you must be an advocate for yourself, be persistent when it comes to your health and taking care of this under-diagnosed illness.
With that in mind….let’s look at who typically makes a Lipedema diagnosis:
There are a few specialists who should have some experience with this illness, and should at least see the signs and symptoms enough to diagnose the condition.
Here are the specialists who most likely diagnose lipedema:
Physical therapist: although PT’s aren’t physicians and can’t legally make a medical diagnosis, they are the ones with the most experience about Lipedema. If a PT says you likely have lipedema, you most likely do…but you’ll have to get a true, documented diagnosis from a physician.
Endocrinologist: Qualified to diagnose and treat disorders of the endocrine glands and hormones, Endocrinologist can be the go-to physician for obesity. Having lipedema will look as if you are obese, and if you persist, you can be sent to an endocrinologist for workup for your thyroid, Diabetes, or other hormonal issues.
Vascular surgeon: Vascular surgeons see patients with a variety of leg complaints including pain, swelling and lymphedema. Patients with undiagnosed lipedema may get referred for such complaints so it the falls to the vascular surgeon to make the correct diagnosis.
Obstetrician/ Gynecologist: Lipedema seems to correlate with three major hormonal changes in a woman’s life: Puberty, Pregnancy, and Menopause. This would be an indicator for Obstetricians and Gynecologists to know about Lipedema and be able to give a diagnosis.
Dermatologist: A doctor who treats the skin (the largest organ of our body), you may get diagnosed with Lipedema, especially if you’re having lymphatic issues.
Keep in mind that any physician, including your PCP, can make this diagnosis as long as they know how to assess your condition as compared to the standards of a Lipedema diagnosis.
I recently found a great site at Lipedemaproject.org with a navigable map with locations pinned on the map for physicians, surgeons, and alternative therapies.
You can find that page here.
Let me know how you got diagnosed!
Make a comment below or email me: mabjaqua@gmail.com.
It’s important to share our stories and bring awareness to the world to see us, and for the medical community to take us seriously, to treat us for our condition, and for medical insurance to cover our treatment.
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I’ll be skipping my Friday update, and instead will be enjoying my Christmas with my family. I hope you are all well and have a wonderful holiday! xoxo
Until next time, have a happy holiday, and take care!
Michelle