Lipe-What Now? My Lipedema Origin Story

From Flight Suits to Fight Mode

Type 2, Stage 3 Lipedema. That’s what they told me four decades later. I’m Holly, and at 51, I finally have an answer to something that’s been puzzling me since my military days: Why did my legs look like I’d gone ten rounds with a heavyweight champion after a simple training exercise? Why did a tiny pinch from my best friend feel like I’d been struck by lightning? And why oh why did my PT uniform shorts make me look like a can of biscuits popping open?

The answer? Lipedema. But let me back up a bit.

The Military Years: When Something Felt “Off”

Picture this: A young mom joining the military, getting down to her fighting weight of 145 pounds (which lasted approximately 24 hours, thank you very much), only to gain 20 pounds in basic training. Now, I told myself it was all muscle – I mean, hello, I was in the Army! But deep down, I knew something was different about how my body responded to training. Fast forward through 6 years of enlisted service with legs slowly increasing year over year, I found myself in a Green to Gold commission program where I would eventually be commissioned as an Army Officer and Pilot.

So, as a pilot, you learn quickly to keep your mouth shut about medical oddities. Nobody wants their flight status questioned because they bruise like a grape or their legs feel like they’re filled with cement. But it was hard to keep quiet when there I was, after SERE training, looking like I’d been beaten with a baseball bat while my fellow Escape and Evaders barely had a scratch. That should have been clue number one.

The Uniform Challenge

You can’t spell Army without first putting on your PT uniform in the morning and liking it, loving it, wanting more of-ing it. But let’s talk about those PT uniforms for a minute. While everyone else rocked their shorts and spandex like they were in a fitness commercial, I was out here looking like… well, remember those Pillsbury biscuit cans that pop open? Yeah, that was me. The spandex would stop just about my knee, creating this perfect little bubble effect that made me feel like I was starring in my own personal nightmare on the daily.

The “You Just Need to Try Harder” Years

Despite running marathons, completing the Iron Aviator, and keeping up with military fitness standards, my legs remained stubbornly large and painful. I once asked someone how they combatted the overwhelming heaviness in their legs to run faster. Since I’d never been a runner before the Army, I figured it had something to do with technique- something people who ran learned and I just needed to get smart on. Ya. No. I wished immediately that I hadn’t said anything since they looked at me like I was an a-hole.

The Lightbulb Moment

Fast forward to age 48. There I was, scrolling through Facebook, probably planning to torture myself with another round of maybe a thigh lift will do the trick,” when I saw it – a woman describing her “lipedema” journey. And her legs looked exactly like mine! It was like finding a unicorn in your backyard: magical, unbelievable, and slightly terrifying.

Finally, A Name for the Beast

Two years ago, after what felt like a medical scavenger hunt, I found a doctor in Delaware who didn’t look at me like I was crazy. Every symptom I described was met with understanding nods instead of confused stares. Stage 3, Type 2 Lipedema – finally, a diagnosis that explained everything from the bruising to the pain to the disproportionate size of my limbs. How do we fix it? Like other things that are causing problems in the body- they remove it. And they do that via multiple rounds of targeted (and often large volume) liposuction.

Where I Am Now

I’m currently in what I like to call “pre-surgery mode.” After navigating the wild west of lipedema treatment options (including dodging some questionable “patient advocates” who seemed more interested in sales funnels than actual advocacy), I’ve found my surgeon. Insurance approval took just two weeks – a far cry from the battles many women faced before recent litigation made coverage more accessible.

The Takeaway

Looking back, I can’t help but laugh at some of it – the well-meaning but clueless military personnel trying to figure out where to measure my “lumpy” areas for body fat calculations, the countless times I explained away mysterious bruises, the constant battle with compression garments and poppin’ fresh thighs.

But here’s what I want you to know: If you’re reading this and thinking, “Holy cow, this sounds like me!” – you’re not crazy, you’re not alone, and you’re definitely not just “not trying hard enough.” This is a real medical condition that affects real women, and while it might make our lives a bit more challenging, it doesn’t define us. And hello folks out there who think we should work out more, the disease does not respond to gaslighting either.

Stay tuned for more updates on my journey. And yes, I promise to share all the details about surgery planning, my Wegovy journey, and everything I learn along the way.

P.S. To my best friend who still feels guilty about that pinch years ago – I love you, but yeah, it really did hurt that bad! 😉

Clinical Information About Lipedema

Lipedema is a chronic condition that primarily affects women. It’s characterized by abnormal fat accumulation, typically in the legs and arms. While not fully understood, it’s believed to have genetic and hormonal components. Our knowledge of lipedema is definitely evolving with ongoing research continually expanding our understanding.

The key symptoms include disproportionate fat distribution of this diseased fat in the lower body or arms, with the upper body often remaining disproportionately slim by comparison to the lower extremities. The affected areas could be tender, bruise easily, and have a nodular texture. The potential complications include mobility issues, chronic pain, joint problems, and psychological distress. Advanced stages can progress to lipolymphedema, which increases infection risks.

There’s some disagreement among experts, but lipedema is often classified into types based on the affected area and then into four stages, though the classifications aren’t universally agreed upon. Those are going to be type one through five, and people can have a combination of those, and then stages one through four, where the skin appearance is going to become gradually more nodular with larger fat folds, impacted mobility, and pronounced swelling.

Conservative treatments and surgical treatments are the two major routes that people follow in the treatment of lipedema. When you talk about conservative treatments, that’s focused mainly on managing symptoms and preventing progression. That can include compression therapy, manual lymphatic drainage, exercise and movement therapy, nutrition and lifestyle modifications, and pain management techniques.

Surgical treatments primarily involve liposuction techniques that have been adapted for lipedema and those aim to remove the abnormal fat deposits. That includes tumescent liposuction, water-assisted liposuction, power-assisted liposuction. The choice between conservative and surgical approaches, or a combination of both, depends on the individual case, the stage of the disease, and patient preferences.

While lipedema primarily affects women, especially during hormonal changes, rare cases of men have been reported. Research is ongoing to better understand its causes, progression, and treatments. Early diagnosis and proper management are crucial for improved outcomes, and despite challenges, with appropriate care and support, many individuals with lipedema can maintain a great quality of life. There is nothing stopping us from living our best life.