You’ve gone through the ‘How do you know if you have lipedema?’ post and you’re sure that this describes you. Your legs look just like the pictures out on the internet, you have some or all of the symptoms, so now you’re asking yourself “What now?”
Now you need to go and get yourself a diagnosis and depending on where you are in the world, this is no small task.
Getting a diagnosis in Europe is much easier than in the United States or Canada.
Sadly, lipedema (or lipoedema as it’s called over here) is taken slightly more serious. Especially if you’re in the Netherlands or Germany. The UK is making progress, but from the complaints I’ve seen from british lipedema ladies, it’s still not as far along as it is over here.
So, how did I go and get my diagnosis? First, I read everything I could about this condition on the internet and armed myself with the facts. I took some pictures to compare with my legs, but luckily my huisart (GP or family doctor) is really good and he had already read up on it before my appointment. All he did was take one look at my legs, totally agree with me (especially after every test on the face of the earth of stuff that could contribute to weight gain came back negative), and give me a referral to the dermatologist.
In a nutshell, if you’re in Europe, a dermatologist is the route that you’ll want to go for your official diagnosis. And, even if you’re not going to go on for treatment, you’ll want to have your dermatologist check your veins and check for secondary lymphedema because lipedema can really wreck havoc on those systems.
You’re in the US and Canada where literally nobody has heard about lipedema…who can diagnose it?
Now, this is just parroting information I’ve seen north american lipedema ladies talk about. However, I can see where all of this has merit.
- Start with your GP or family doctor armed with all of your research. Be prepared to educate them on the condition and don’t let them bounce you out the door with “eat less move more” because if you really have lipedema, it’s not going to help. If you haven’t tried a diet lately, or gotten blood work done, and that’s where your GP wants to start, go along with it. Until you can eliminate EVERYTHING, you’re not going to change their mind that it’s not you, it’s your body not playing nice.
- A dermatologist may be able to make a diagnosis since the chances that they’ve actually heard of lipedema is greater than a GP.
- A vascular surgeon will also probably have heard of lipedema since it can cause varicose veins and induce lymphedema.
- There are several plastic surgeons around the US that do a special liposuction for lipedema patients. They can also tell you if you have it.
Nobody wants to listen to me, everyone just keeps telling me I’m fat and can lose weight like everyone else.
If you’re 100% certain you’ve put every ounce of effort you can muster into losing weight, you can drag months or years of journals that are more meticulous than a researcher’s logs, and have an iron willpower, then you may need to drum up just a little more effort.
Sadly, there is fat bias and doctors love to believe that it’s their patient’s lack of willpower or effort that’s at fault for their condition. They’re human and for 89% of the populace that assumption holds true. For normal people calories in and calories out really DOES work.
But, if you’ve gotten this far, dig your heels in and don’t let your doctor turn you away. If you’ve never weighed, measured, and tracked your food, start doing that. If you don’t exercise, start doing as much as you can and as often as you can. Make appointments to show them your progress and proof that your limbs aren’t getting smaller (and, you’ll do yourself a favor by losing normal fat!).
Most importantly, don’t give up. It’s pretty easy to do when there’s no progress or results for all of your hard effort. However, if you really have lipedema, it’s completely worth all the hard work to finally have that diagnosis and to know, it’s really not your fault.