Can You Self-Diagnose Your Lipedema?
In a way, Yes! I did it and you can too. Here's how.
This article may be a bit controversial because the medical industry does not want you to diagnose yourself. That’s their job, not yours.
However, I am part of that medical community, and I disagree. Too many of us women go around in circles for years, trying to find an answer from doctors about what’s happening to our bodies. Instead, we are dismissed, tongue-lashed, and ridiculed, or worse, misdiagnosed and mistreated.
I’m looking at “self-diagnosis” as a way to understand what’s happening to your body and take that information to a medical professional so they can help you.
You can look at detailed signs and rule in or rule out the possibility that you may have Lipedema. You know your body better than anyone, and you can read your bodily signs and symptoms as well as anyone.
Since many doctors don’t know or care to learn about lipedema, you must arm yourself with information and facts to get a valid medical diagnosis.
You may be dismissed from your PCP, told it’s inevitable for women to gain weight like this—it’s part of aging, or given a shoulder shrug. You might be told that Lipedema doesn’t exist, that it’s an excuse for getting liposuction. You may even instead be diagnosed with another physical or mental health condition and then be improperly treated.
This is why your self-advocacy is so important. You must take charge of your situation and demand to be heard. This doesn’t just go for Lipedema but for all bodily issues.
Lipedema is a condition that is diagnosed purely by clinical assessment
First, I want to emphasize that I’m not a doctor and can’t diagnose you. From research and literature, I can only show you the common signs and symptoms of Lipedema. There are distinguishing characteristics that can give you a good idea if you indeed may have this disease.
Of course, checking off boxes of symptoms does not replace a confirmed medical diagnosis. You can’t just say, “Hey! I have checked all the boxes and diagnosed myself with Lipedema, and now I need treatment.” It doesn’t work that way. Medical professionals will scoff, and your insurance will deny your claims.
And really, although you may have all the signs of Lipedema, it’s still possible to have a similar problem that closely resembles Lipedema. That’s why it’s essential to arm yourself with knowledge and then go to a reliable doctor to get a true medical diagnosis.
You will need a doctor to diagnose you properly to get the right treatment.
Seeing the signs and symptoms in your body that align with Lipedema is not unlike any other problem you’d find in your body, and you come to a reasonable conclusion that you may have a disease.
If you felt a lump in your breast or took your blood sugar with a CBG meter and found it off the charts, or even if you heard something snap after you fell, you could reasonably conclude that you may have indicators for breast cancer, diabetes, or a broken bone.
The difference with any of these issues mentioned above is that: 1) they are well-known and accepted by the medical field, and 2) a simple medical diagnostic (lab work, imaging, etc.) can confirm or deny your suspicions.
Lipedema is not well-known, nor does it have any labs, imaging, or other diagnostics (like a biopsy) that a doctor can order to confirm your diagnosis. As I’ve already said, Lipedema is diagnosed purely on clinical assessment. And a clinical assessment is a fancy way of saying that a trained medical professional (like a doctor) asks you about your familial and medical history, does a physical exam, and evaluates your signs and symptoms. And using their medical experience, Viola! Diagnosis confirmed or denied.
“Self-diagnosis” means you are only making a reasonable attempt at ruling in or ruling out the possibility that you may have Lipedema.
There are some common indicators of someone with Lipedema. Everyone is different. And the trickiest part is other diseases can imitate Lipedema. You need to see a doctor for a diagnosis and treatment. I can’t emphasize this enough.
So, I will tell you how to assess yourself, check off the boxes, and determine if you may rule in or out that Lipedema is a possibility.
Understand that doing this is not an accurate diagnosis that medical professionals can use. Instead, it is information you can use to go to the next step of being diagnosed by a medical professional. This first step will arm you with the knowledge you can use for your proper diagnosis and medical treatment. You are not a doctor, and I’m not a doctor. You need to see a doctor for a diagnosis and treatment. I can’t emphasize this enough.
First, if you have any unexplained swelling, see a doctor immediately!
The signs and symptoms I give below are not life-threatening measures. I will not talk about swelling or lymphedema. Swelling of any kind needs to be immediately evaluated by a medical professional. This type of swelling in the above photo is NOT characteristic of Lipedema.
If you feel that you don’t understand the questions below at all, or are uncomfortable with the thought of trying to evaluate yourself by these signs and symptoms, then by all means, do not do this. I don’t want to make you more confused.
If you haven’t read my previous newsletters, “Becoming Aware that You’re Not Just Fat,” Parts I, II, and III, I highly suggest going through those articles. You’ll get detailed information about Lipedema’s signs, symptoms, and comorbidities from them.
This is not a comprehensive diagnostic tool, so I want you to understand that this is only for determining if you could possibly have Lipedema. Even if you answer Yes to these questions, you may have other conditions that are not Lipedema.
I’m going to make this quick and easy. Answer yes or no to these questions:
Are you biologically female? (Lipedema appears to be a condition almost exclusively affecting females)
Do you carry disproportionately more weight in the bottom half of your body? Do you still have a waist? (Lipedema typically affects the lower body and sometimes the arms)
Do you have dimpled cellulite in your butt, hips, thighs, calves, abdomen, or upper arms? (Below is a classic presentation of Lipedema. Notice the lumpy, bumpy, fatty nodules and the fat pads in the back of the knees)
Did you notice the dimpled cellulite at puberty? (Lipedema is presumably estrogen-requiring as it usually manifests at puberty)
Did you notice the increase in this cellulite during puberty, pregnancy, or menopause? (Lipedema seems to manifest during times of hormone fluctuations, indicating that estrogen plays a role in Lipedema pathology)
Is your body symmetrical, where both legs are about the same size? (if you have asymmetrical leg thickness, where one leg is much bigger than the other, this is a condition to see a doctor about immediately!)
Have you tried diet and exercise but can’t seem to lose weight no matter how hard you try? (although you must maintain a healthy diet and exercise program, diet and exercise do not reduce lipedema fat)
Do you bruise easily? (Bruising is a common problem with Lipedema)
Do you get “creepy crawlies” in your legs, or do your legs feel restless (especially at night)?
Do you have “spider veins?” (telangiectasia-see below photo)
Can you put your palms flat on the floor without bending your knees, pull your thumb down to your forearm, or otherwise been told you’re hypermobile or double-jointed? (Women with Lipedema also have been known to be hypermobile)
Do you have a biological female relative who’s also had similar body issues, such as a heavier lower body, thick calves, and ankles, or any of the above? (Scientific research has proposed Lipedema may be an inherited condition)
Do you have lumpy fat that doesn’t look like normal fat? (see below)
Do you have cool skin in the areas where you have dimpled cellulite?
Are these nodules tender or painful to the touch? (The diseased adipose tissue in Lipedema can become fibrous and tender if you apply pressure)
Has the fat tissue increased during puberty, pregnancy, or menopause? (Lipedema is possibly a condition requiring estrogen)
Answering yes to most of these questions can rule in the possibility of Lipedema, and you should further get this checked out by a specialist as best as possible. I’ll write more about getting diagnosed correctly in the following newsletter.
If you’re curious about where I got all of the above information, here are the references below with links:
And if you want a visual reference for Lipedema, here is a quick and easy visual of what it looks like and feels like:
Since this particular newsletter has an overwhelming amount of info, there may be a lot of questions. Please don’t hesitate to contact me. I’d love to interact with you and help in any way possible.
Please let me know if there is anything you’d like to focus on with Lipedema. I want to write about what’s important to you.
Otherwise, I’ll continue to give you the most comprehensive information I can find about Lipedema and how we can conquer this together.
Take care,
Michelle