Posts by silentpilot1

lonecyclist13 said:Oh, thanks.
...what a bummer.

And honestly, even if they did use a different technique, I wouldn't be heading to a doctor who doesn't have years of experience dealing specifically with lipedema.

lonecyclist13 said:silentpilot1 - basically, they aren't saying they use laser lipolysis for lipedema, just that they favor vibroliposuction combined with some other blah blah blah
Did you actually ask them that, or is that just what their website claims?

I actually got an email response from them:
"At the Mayo Clinic, we treat lipedema using laser lipolysis, with prices ranging from $1,100 / $2763 to $3,000 / $7534 per session.
You can find more details about the procedure at this link and here
The exact number of sessions and the final cost will be determined after a consultation with Professor Mijatović. The fee for a consultation with the professor is $67 / $168.
Currently, our earliest available consultation slots with the professor are in mid-May."

lonecyclist13 said:Just wanted to share that ever since I realized I probably have lipedema, I've been feeling pretty low. It wasn't even hard to figure out—the symptoms are so obvious and specific, and we understand them so much better than the general public does. Since I realized this, I've just felt crushed. For two long years, even though I knew what was happening, I've been trying non-stop to fix things through diet and exercise, and I've been fighting this unsuccessfully since puberty. Now that I'm 50, seeing it all laid out in black and white—knowing there's a name for it, that I'm not alone, but also knowing there's really only one expensive solution—has just completely broken me. I've lost the will to keep fighting. 😔

Look, the solution is incredibly expensive. That’s just facts. But I think if it's done right using the correct method, it is permanent—though that mostly applies to women who have gone through menopause. Once those hormones settle down, you aren't constantly triggering new tissue growth. For younger women, the hormones are still active, so the lipedema can start spreading again, though in a best-case scenario, it might take ten years after surgery before that happens.
There are a lot of variables here. The main thing is that you have to treat every single area affected by lipedema. If you only focus on one part, you'll find another part of your body flares up shortly after.
It's also vital to pick a doctor who actually specializes in lipedema and uses the right liposuction techniques. For us, the gold standards are WAL (water jet assisted liposuction) and TAL (tumescent technique), or a combination like TAL/PAL (tumescent with power-assisted liposuction).
We don't really have specialists for this here in the States, and some clinics offer laser lipolysis, which isn't even a legitimate liposuction method for lipedema.
In Germany, there's a huge selection of clinics with top-tier experts, and you can find great options in Poland, Italy, and Spain too.

lonecyclist13, which areas are affected for you? I'm 48, and it's my entire legs, lower abdomen, and upper arms. I'm thinking I'm Stage 2, Type 4.

lonecyclist13 said:Hey.
Has anyone ever actually reached out to this clinic here in the US:

This is about the Mayo Clinic. I sent them an inquiry yesterday; if they ever bother to reply, I'll let you all know.

Count me in too!
I’ve done some self-diagnosing and I’m pretty sure it’s lipedema.
I want to get an official diagnosis, obviously, but I have no clue where to even start.
My GP is basically useless—she’s just a temp who barely graduated from med school.
I’m actually looking into getting surgery abroad, so having a solid, written diagnosis is a huge priority for me.
I spent my whole life being thin with toned legs. Now that I’m pushing 50, I’m not exactly "thin" anymore, but when I try to diet, I lose weight everywhere else except my legs. They just stay three sizes larger and look even worse because they just keep swelling up.
Today, a physical therapist gave me the usual "just exercise and lose weight" advice. I told him straight up: I’ve tried that more times than I can count, and it NEVER works on my legs. They don't shrink; they just grow. It’s incredibly frustrating when the medical professionals won't even listen or show any actual interest in what's happening.
Even if I manage to squeeze a referral out of my GP to see a specialist, I’m terrified I’ll just end up with someone else who’s totally clueless or indifferent.
If anyone here has actually secured a diagnosis, please let me know how you handled it.