What is it Like to Have Lipedema?

Today I was asked a question that nobody has asked me before.  What is it like to have Lipedema?

I can sum that up in 2 words.  It sucks.

Before I even knew about lipedema, I thought I was just fat and an utter failure at dieting.  Who else in the world can eat at a 500 calorie deficit a day and only manage to lose maybe 100 grams of fat over the course of 3 or 4 months? Nobody I knew.  Even though I tracked every morsel that passed my lips and exercised my ass off, I absolutely and utterly failed at losing weight.

Before I knew about lipedema, I dreaded getting a massage.  I couldn’t even tolerate a relaxation massage since it felt like every therapist was digging into knots.

I didn’t understand why my legs went straight up and down while other women that looked around 130kg had ankles, why I bruised so badly, or why I couldn’t kneel on the ground without being in utter agony.  However, on the flip side, I didn’t notice my legs being heavy or getting tired because this was how it had been for years and I didn’t know any better.  The same with the pain, it wasn’t until I started having liposuction and experienced life without the pain that I really could appreciate how much pain I was in.

Before I knew about lipedema, my relationship with food was absolutely rotten.  I hated eating in front of people because I felt judged for what I ate.  Even though I have a tough outer exterior, I felt the eyeballs on my plate and then on me.  I actually had people tell me to go ahead and eat something, don’t eat a more moderate portion just for them (yea, seriously) even though I was calculating what I’d put in Fitday, the computer program I use to track my calories and macros.

My husband, his family, and probably even my own parents and friends thought I was sneaking food when nobody was looking.  Since my husband is the one that does all the finances, you’d think he’d notice abnormal purchases from the store (I despise going grocery shopping so I never go unless I have to, otherwise I’d end up in jail for murder) or abnormal withdraws from the ATM (it’s a cashless society in the NL so we hardly take cash out…it would have been noticed).

Being diagnosed was kind of like having a mosquito bite that you didn’t know about, but someone pointed out and it started itching badly.  As I said, I wasn’t aware of my legs being heavy or being horribly painful outside of kneeling and massage.  Once my awareness was brought to it though, my legs started aching and getting tired more.  I don’t know if this was mind over matter, but it seriously sucked.  In a weird way, it was almost better not being diagnosed because ignorance is bliss.

Other than my awareness being brought to the situation, I didn’t feel any different.  I realized that most of my mobility issues, such as walking on the outside of my feet, was due to the way the lipedema was growing in between my thighs.  I realized my waddling, was due to the way the lipedema made me walk.  I realized the “butt shelf” on my ass was due to the way the lipedema grew on my posterior.  I realized that all the weird and unexplained bruises were due to the pressure of the lipedema on my blood vessels (and I didn’t stop getting the bruises, nor did they hurt most of the time).

Personally, I think most of my awareness of lipedema and the feeling of lipedema came after the fat was removed via liposuction.  With the absence of pressure from the lipedema fat, I realize now how much pain there was.  I had no clue just how heavy my legs were until I walked up the stairs the first time after my left thigh liposuction.  When someone says they feel like they’re dragging a ball and chain behind them, that’s exactly how I felt with having to almost drag my much heavier, right leg, behind me up the stairs.  It was also an eye opener the first time I was able to cycle after my left thigh surgery on just how much the weight of the fat had been holding me back.  I was amazed at just how light my left leg was compared to my right and at how much faster around I could get it.  My right leg tired out long before my left ever did.

That was really my first realization at how much the weight affected my life and at how stubborn and bull headed I had been.  Before liposuction I still hiked that mountain, even if it was going to kill me.  I’d do that 30km walk with everyone and keep up even if I’d be in pain for the next week, just to prove I wasn’t fat and unfit.  Yea, I could do these things but I had absolutely no clue that it affected me in such a negative manner because it was just the way it was.  I didn’t know any better.

I’m only one liposuction surgery away from being done, outside of possibly a little revision work to get little pockets (I mean a few CC’s) of lipedema fat that was left behind.  I’m fully aware now of just how much the lipedema fat under my arms, along my lats, across my back and on my lower back hurts when it’s pressed on since I’ve been pretty much pain free since September of 2016 (unless someone poked my stomach hard or squeezed my arms because as of September those surgeries hadn’t been done).  Going to the fysio to have my lats and traps worked on is uncomfortable since the fysio has to find trigger spots and the only way to do that is poke into the lipedema fat.  Sports massages there are also pretty uncomfortable and my sports bra is starting to leave bruises.

Also, post discovery of lipedema, my relationship with food is a little better.  I will tell you that it’s hard to continue on with a caloric deficit (to protect my 20,000+ euro investment) and have to micro manage what I eat to not only keep new fat cells from forming, but try to keep the swelling from lymphedema down.  I do have fuck it days where I say fuck keto, fuck a caloric deficit and fuck the world and eat the food I want.  Then I suffer for cheating on my keto diet (my gut hates that) and meekly go back to keto and the caloric deficit.  Oh, don’t worry, I don’t feel like that every day and at some point you get sick of feeling like crap all the time so you accept this is the way it has to be a little more every time you get back onto the wagon after falling off.

But, I don’t feel like lipedema is that weight around my foot dragging me under water anymore.  I really can’t imagine what it’s like for the ladies that can’t afford surgery, or who’s tissue has turned so fibrotic that they’re no longer eligible for surgery.  Especially since I knew that I would do anything to afford the liposuction once I was diagnosed, not having this surgery wasn’t an option.  Ever.  I’d have sold my car, a kidney, or sold my body in the red light district if I had to in order to afford the liposuction so yea, I can’t even being to fathom what the ladies who are going to be trapped in a fat suit for the rest of their lives feel like.

You’ll have to ask them.  All I can say is while lipedema is part of me, it’s not who I am nor will it drag me down.  Not now, not ever.  So that’s what it feels like to me to have lipedema.


PetraAnn was first diagnosed with Lipedema in fall 2015 after years of eating keto and exercising with no weight loss results.After diagnosis, she has gone through 8 tumescent liposuction procedures from 2016 until 2018 and on 17 December 2019 underwent an abdominoplasty to remove the remaining 3-4 liters of lippy fat and loose skin.

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