My Lipedema Story
The Unexpected Encounter
In May of 2024, while I was swimming laps, walking in the resistance pool, and soaking in the hot tub at my local pool, a lady approached me. "Can I talk to you for a minute?" she asked. Being a very open person, I smiled and said, "Of course." She looked at my legs, then pointed to hers, and asked, "Do you know that you have Lipedema?"
I looked down at her legs, which were almost exactly like mine, then back at her in amazement. "What is Lipedema?" I asked. She shared some basic information she’d recently learned and sent me on a mission to join a couple of Facebook groups. For the next year, I casually searched for information, joined groups, and started paying more attention to my legs—the heavy, painful, lumpy, swollen, tree-trunk-looking limbs I had been carrying around my entire life.
A Lifelong Mystery
I first noticed my legs were different from my friends' when I was a young teenager going through puberty. They started losing definition; my ankles and knees became swollen, creating the look of one long trunk with no differentiation between my knee, calf, and ankle.
Then, at 22, I was diagnosed with PCOS (Polycystic Ovarian Syndrome). Miraculously, even with PCOS, I was able to get pregnant and give birth to my son at 24. By this point, my legs were what would be labeled Stage 2 Lipedema.
Fast forward 17 years to my heaviest weight. I made a life-altering decision and went to Tijuana, Mexico, for a Gastric Sleeve procedure. That decision was one of the best of my lifetime. I had zero complications and very few negative side effects. Within a year, I lost 156 lbs! For the first time in almost two decades, I was under 300 lbs. At 5’9”, I’m taller than a lot of women, but I still had weight to lose.
Life's Curveballs
Life then threw me some curveballs. I went through major trauma, a divorce, moved to a new state, a new marriage, and spent several years in counseling working on my mental health from endured trauma, both as a child and an adult.
By the time that wonderful woman approached me at the pool in May 2024, I was weighing around 328 lbs. I was just in a maintenance phase, resigned to the body and legs I thought were simply "who I was going to be." Even after losing over 150 lbs, my legs had barely changed. While their reduced size made daily life more bearable, increasing my activities and flexibility, I still couldn't do basic things: walk around theme parks, shop for hours at the mall, squat, sit Indian style, or kneel on the floor.
All these movements were still restricted due to the location and density of the fat deposits. I still had "cankles." I still had legs I was super embarrassed to show in public. It affects how I dress, the clothes I choose, and how I see myself.
There are certain activities I would LOVE to do but simply can’t. And I hate it. Internally, I hate my body. I feel trapped. Throughout my life, I tried countless diets, weight loss drugs, and techniques to lose what all the doctors called "excess weight and water." These included Atkins, Weight Watchers, Phen-Phen, Keto, Paleo, and many, many "magic fix" diet aids and supplements.
It wasn't until that fateful day in May 2024 that someone FINALLY told me:
"It’s not your fault… it’s genetic and progresses with hormone changes."
My New Mission: My Lipedema Life
So now, after recently losing my 9-5 job and having more free time to truly delve back into the "why" and how to better manage, repair, and possibly HEAL (can it be done???), here I am. I’m focused and ready to take my research and experiences to the "interwebs" 😉 to find others who are in the same boat, with the same stories.
My goal in starting My Lipedema Life is simple: to help anyone else who feels like I do and is as frustrated as I am by the lack of knowledge and education within the medical community about this debilitating condition.
There are a handful of physicians and surgeons throughout the United States who are actively recruiting and treating people with Lipedema, claiming to be experts in diagnosis and navigating insurance.
But if you randomly walk into your regular medical doctor or primary care physician, nine times out of ten, they will have no clue what Lipedema is and cannot give you an official diagnosis. Unfortunately, most people I know or have met who suffer from this condition are still being told it’s simply morbid obesity and they just need to do caloric deficit diets and exercise more. When in reality, THAT IS NOT THE ANSWER!
Walking This Journey Together
So, walk with me… let’s go on this journey together. A journey of learning "What Lipedema Is," "The Root Causes of Lipedema," "How to Manage Our Lipedema Lives Daily," and maybe, just maybe, how to prevent it from progressing and/or HEAL it with or without surgery. Liposuction may be the only way to remove the hard, painful, heavy, stubborn nodules that have formed in the subcutaneous tissue… and it’s okay if that is the outcome. We will adapt and move forward.
BUT I’m also on a mission to know: Can it be healed without surgery? Can it be prevented in young girls entering puberty? Can we learn how to counteract this hereditary disposition at any stage? I don’t know the answers… but I want to find out.
Walk with me. 💞 I'd love to hear about your Lipedema Story, feel free to comment below.
All My Love & Light,
~Brooklynn~
*Author's Note: I AM NOT A PHYSICIAN OR MEDICAL PROFESSIONAL OF ANY KIND. This information is the culmination of my own research, opinions, and experiences. Always search for your own medical professional, primary care physician, or plastic surgeon who IS KNOWLEDGABLE about Lipedema.*
