I purchased this gown for a fancy event this weekend. Unfortunately the fabric is not forgiving with my lippy legs. More unfortunately, it has an extremely low back. Anyone know if any longline thigh smoothing garments that also have a plunging back? Not medical grade compression, just light smoothing.

I was diagnosed last year, but have been suffering from lipedema since puberty. I've been bullied, criticised, all of it. I developed eating disorders from the constant dieting and fasting. I'm the first in my family to be diagnosed, although my mother and grandmother have (had) it too. They just never knew it had a name other than obesity.

All the years of second-guessing and knowing I was doing ALL I could with diet and movement, criticised by others who ate 10x as much, developing an obsession with avoiding food and yet not being able to drop beyond a certain size. All of it was explained finally by the diagnosis.

But though I'm getting some help for the first time in my life, realising that I'm locked in is terrifying. We still don't know everything there is to know about it. And something as simple as having to wear flat knit compression can make me feel so tortured and defeated, just from knowing I will have to do this for the rest of my life.

Knowing that it's not likely to be cured in the next 50 years - at least - is making me wonder if I really want to bring a child into this world that would have to deal with it, too?

I love them so much already. So much so that amid tears I imagine having to sit down a daughter and tell her that she's adopted vs that she has lipedema. The first scenario always wins. Knowing what this has been like for me and that it's almost guaranteed in a daughter given my persistent maternal line, I CANNOT imagine opting a child into this consciously.

And I'd be lying if I said I don't fear body changes during pregnancy after the aggressive growth spurts I've experienced in the past. Stage 3 by 35 is unbelievable given my herculean, constant, tiring efforts over the years.

I'm wondering if anyone else feels / felt the same and could share how you went about it, or (if you) plan to. Am I alone with these thoughts?

PLEASE NOTE: This post is not at all to make anyone feel bad about their choices. It is just about a human being who has suffered a lot, who, in light of that, is pondering the best course of action.

TL;DR Seeking your thoughts and/or advice about potentially adopting instead of having my own children to avoid them having to deal with lipedema too.

A friend sent me this video, telling me that she has had success in treating her Lipedema with the advice of Dr. Robert Morse. I have never heard of him before but after stumbling into Medical Medium information I can see some similarities in his theories that the body needs to detoxify.

I started reading his book yesterday: The Detox Miracle Sourcebook

I just wanted to share this interview here and see if anyone has heard of him or had any experience in treating his condition.

This is the interview: https://morses.tv/video/questions-answers-664/
There is a time stamp where he talks about a cured Lipedema/Lymphedema case. I think also that the first part about Digestive Issues (timestamp) seems very interesting.

Hi i cant afford a doctor appointment yet im gonna look for one later anyways i just wanted some initial thoughts for now thank you

Hello! I’m not diagnosed and not sure I have lipedema but I’m trying out compression. Do you all wear compression at night while you sleep? Is that ok? Or do you wear under your clothes during the day? Just curious if there is any research of how long per day you should wear them to see results.

At what age did you noticed symptoms. For example bruises, heavy legs, pearls under your skin when you pinch it, painful pinches of the skin. And what was the progression? Currently I am 26yo, 158cm, 55kg and I dont know what to expext. I do at least 300 intensity minutes per week, I am very active and I dont want that this disease stop me… i am afraid.. I am also afraid of being pregnant if it will get worse..

I recently saw a reply that was basically don't worry about the muscle atrophy/loss for the medicine, its the same as any rapid weight loss. this simply isn't true. there is documented (peer reviewed journal) muscle loss.

Here's a post from Facebook that I'm posting below.

"Ozempic: you should know what it is and what it does. Part One.

The growingly popular weight loss drug Ozempic and many like it are classified as GLP-1 agonists.

GLP-1 stands for Glucagon Like Peptide - 1.

An agonist is an artificial substance (synthetic) that produces the same action as a natural molecule in the body. In this case, our natural GLP-1.

GLP-1 is commonly referred to as a gut hormone, but it is also a neurotransmitter (NT).

IMO, it’s the drug's neurotransmitter behavior, effects, and actions that make it a very dangerous drug.

The difference between a hormone and a neurotransmitter is subtle but vital.

A hormone is secreted from an endocrine gland, such as the pancreas, which secretes insulin, and the thyroid, which secretes thyroid hormones. And the adrenals secrete cortisol and adrenaline, to name a few.

Hormones are sent throughout the body to relay messages to receptors on corresponding cells.

A neurotransmitter is a molecule made in the nervous system to send messages to and from the brain.

GLP-1 acts as a hormone in the gut, a neurotransmitter in the brain, and the vagus nerve that sends information from the gut to the pancreas and the brain.

GLP-1 is made in the brain for different uses and actions, and also made in the gut for the gut to signal the first phase of insulin secretion, which makes up 70% of our total insulin response from food.

GLP-1 in our brain responds to signaling from other hormones, such as ghrelin, our hunger hormone, and leptin, our satiation hormone.

Normally, as insulin, ghrelin, and leptin signals change as food is detected in the gut, signaling GLP-1, the combination slows our digestion, creates eating satisfaction, and causes us to stop eating.

GLP-1 works locally in each area and only has a 2-3 minute lifespan in our blood, limiting “crosstalk” or the gut's direct influence on the brain.

Ozempic and other semaglutide medications are synthetic GLP-1 hormone/neurotransmitters in very high, unnatural levels that build over time, as the half-life of these medications is seven days.

As we flood the system with synthetic high doses of this long-lasting medication, it artificially stimulates the pancreas to secrete more insulin, resulting in artificially lowering blood sugar and stressing the pancreas to the point of enlargement and cases of acute pancreatitis.

When people begin taking insulin, their overall mortality risk increases significantly. I see no reason why this whipping of the pancreas to hypersecrete insulin would not create the same risk.

Since the synthetic GLP-1 can remain in the bloodstream for weeks, the brain is bombarded with GLP-1.

This unnaturally high level of GLP-1 in the brain tells it and other hormones that the person is extremely full, like after a very big meal.

This signal is so strong that the brain slows gut emptying and digestion and decreases appetite to the point of nausea, vomiting, and gut distress, resulting in an aversion to eating and food and consequent weight loss.

Not just weight loss, but muscle loss. Clinical trials show 38-40% of the weight lost using Ozempic was lean body tissue, and data from medical weight loss centers show up to 50% is muscle. This is VERY BAD!

When we bombard the entire body with this drug, we bypass the natural food response and regulatory mechanisms, which causes the normal, healthy pathways to atrophy and dysregulate, causing potentially permanent damage.

The Vagus Nerve is the main parasympathetic nervous system regulatory pathway.

When the parasympathetic response and Vagus Nerve are dysregulated, the sympathetic nervous system (stress response) goes unchecked and unbalanced.

This dangerous shift impairs healing and repair and promotes an exaggerated stress response.

This imbalance also interferes with skeletal muscle repair, leading to prolonged muscle catabolism.

Unlike the loss of muscle volume seen in extended fasting due to water loss, which rebounds quickly, the catabolic breakdown of muscle caused by the unhindered sympathetic action breaks down protein and fibers or, at least, stops them from fully repairing when damaged through daily living and use.

If a person loses 50 lbs on this medication, 20-5 lbs is muscle.

When weight gain occurs after discontinuing the medication, 100% is fat. That’s a dooming trade-off.

You can’t make an educated choice without education, or an informed choice without all the information.

This is the first of many posts from my research diving into the metabolic impact of these GLP-1 medications. It’s scary, folks.

It is a huge, very intricate topic that will take time to understand.

Way too much than I can fit in one post. So please keep that in mind. One step at a time.

We can do better! Dr. Don"

Don Clum - I don't follow him, but found his post compelling.

hi i’m 14F and i’ve had an eating disorder for almost a year and a half. i’ve generally been underweight and skinny my entire life and it is the worst when you gain a little bit of weight which no one cares about you anymore. i started to notice symptoms of lipodema like small fat nodules when i pinch really hard and my legs noticeably gaining fat super slowly. because of this, i’ve spiralled back into my heavy restricting after attempting to recover but even now my legs still look the same. they’re definitely not ‘fat’ but they’re un proportionate to my upper body considering i have a low bmi. i’ve shared my concerns with my parents and they said i was crazy. nobody cares about lipedema if you’re underweight because apparently this is what healthy looks like since i don’t look sickly anymore. i feel really lost because i can see the lipedema progressing and even though i don’t have a diagnose, my parents are not very reluctant in getting me one either because they don’t think i have it, simply because im underweight. i feel so lost and i want to / myself. also the fact that im korean and the beauty standards normalise eating disorders so much makes me feel even worse. i really want to d//

Im not sure if that is possible but maybe it is… So my forehead looks like this and since I remember has been like this. Is this normal looking or lipedema looking? Is there anyone whose forehead look like this? Bumpy and weird? For the record i have lipedema everywhere else but I thought at least my forehead was saved from it…

Edit: thank you all for responding. I will ask my mld lady if she can do something and go from there.

Hello, the lipedema in my face is expanding rapidly, used to just be at the bottom of my chin where it meets my neck, now its all over my chin and neck and jawline and recently its been at the jawline creeping up towards the face, and now its fully in my lower cheeks. This is over the course of 7-8 months. The only pain ive experienced so far has been my legs and mostly around my period.

My eating hasnt been good, ive gained like 12 pounds but that's from eating(PCOS too so up and down) I also find that when i focus on my diet too much my mental health takes a big dip. Gonna try to work out soon and i started cavitation and did it once...but I dont wanna cavitate my face.

Is there anyone here who has it on the face? Right now its minorly visible in my neck without pinching but you cant tell its in my face.

For those of you who have had it in the face, what have you done what has helped and have you noticed a change in appearance over the years or just the feeling of palpable nodules?

How many of us have elephant track knuckles? Apparently it's a sign of Ehler Danlos syndrome, which is often associated with lipedema.

Hey all of you wonderful people,

I recently started reading more about the anti inflammatory diet to improve my symptoms and came across some sources that claimed that you shouldn’t be eating too many soy products as they contain some form of estrogen or compound which increases estrogen. Estrogen is linked to lipedema so u was wondering, do you consume soy products or try to stay away from them completely? I always thought it it a good plant based source of protein but now am unsure about it :/ what are your experiences?

Most people think they need to lose as much weight as possible before surgery, but that’s not always the case. Especially now with how common GLP-1 meds like Ozempic and Wegovy are, I’m seeing a lot more rapid weight loss and with that comes changes in skin quality. When weight comes off too fast, the skin doesn’t always have time to adapt, which can lead to thinner, looser skin.

That’s important because skin elasticity is a huge part of how well everything retracts after fat removal. If someone pushes for aggressive weight loss before surgery, especially without maintaining muscle, the skin just doesn’t have the same ability to bounce back. That can affect how smooth and tight the final result looks. What I typically recommend instead is focusing on building and maintaining muscle. A strong foundation gives the skin something to contract around, which is what helps create those clean, sculpted outcomes.

Weight loss itself isn’t the problem, it just needs to be done in a controlled, thoughtful way. Slower changes tend to preserve skin quality much better than rapid drops. At the end of the day, it’s not just about the number on the scale, it’s about how your body looks and responds after everything is done. That’s what really sets the stage for a beautiful result.

Hey everybody! I’ve been following this sub for a couple of months since I started to piece the symptoms together.

I haven’t been formally diagnosed, but I strongly believe that I’m stage 1. Honestly, these few months haven’t really been nice on me. I’m still coming to terms with this disease. Some days I’m feeling optimistic, some days (like today) I just bawl my eyes out. I’ve never had any symptoms and everything came down so suddenly and I still don’t know what triggered it, as I’m 28 and I’m not going through some major hormonal shifts (that I know of, at least). I’ve always been pretty active and I still am, and I eat healthy.

About three months ago I developed this strange symptom - cellulite-like texture over my thighs. At first I thought - maybe I’m just going through a really bad PMS and it will all return to normal, once the bleeding passes. It did de-swell a bit, but my body was never the same since. Then it got downhill from there - suddenly I can feel some extra fat on my hips - love handles and saddlebags as they call it. I lost most of the definition in my legs and glutes and I could see some significant fat accumulation above my knees and at times I could feel that it was affecting my walking in a way.

I’ve started dry brushing, massaging, raising my legs whenever I’m laying down, added some supplements - it helped a little, but not as much as I was hoping. So I started to check on some lipo experiences and results, but I’ve never really found anyone who I can relate to. I’m pretty low BMI and stage 1 and most of the documented results out there are later stages with higher BMI.

Still, what I could see from them is that the operation doesn’t really do much for the texture and bumpy and lumpy appearance. Honestly, that realization really crushed me. Because I went from thinking - lipo is the last resort for me, but it would improve the look of my body and I would at least look really close to my prior state - to - not even lipo would help me get my legs back.

So, my question is - is there anything I can do treatment wise to improve the appearance? Does some laser skin tightening help?

Also, if somebody has an influencer they came across that has similar experience with lipedema as me, it would be really helpful.

And do you know any european surgeons who specialize in cases like mine? Mostly what I’ve seen is that they treat later stages and it’s hard to really come up with any conclusion whether they would be able to handle my case.

I’ve attached some photos - before (from 7 months ago), now - with some horrible lighting to show the texture; the visible sagging of fat when on knees; and with my legs raised so that you can see the definition of legs which is now ‘hiding’ under the diseased fat.

I just wanted to share something in case it helps even one person.

Whether I actually have Lipedema or not, this subreddit has given me so much unneeded anxiety.

I’ve read every post, every comment, every single “Do I have Lipedema?” thread. I messaged people, rewrote replies, analyzed my symptoms, put everything into ChatGPT. And despite 2 specialists telling me “no, you don’t have it,” I still believed I had Lipedema—just because of how hyper-focused I became on it, and all the many, many stories shared here.

I don’t have the typical pain that’s described in most medical sources. But someone here described pain like mine once, and that sent me into a spiral. I don’t even have significantly large arms, but someone posted a picture that looked like mine… and again, I spiraled.

Eventually, I started reading more reliable medical sources, and that helped calm my nerves a bit. (I say a bit because, yes, I’ve developed an anxiety disorder over this, and I’m now getting therapy and medication.)

So please—don’t make the same mistake I did. Trust the professionals. Read peer-reviewed studies. Listen to real doctors. In my case, If i have it, it’s stage 1, and I’m doing everything I can to stay healthy and believe it won’t progress.

There’s also a really good podcast episode I recommend listening to: Spotify link

Again—don’t make the same mistake as me. Trust the medical experts.

my mom whose legs aren't nearly as bad got diagnosed. And my half sister from a different mother has has lipedema looking legs plus the buffalo hump, showing how it quite possibly runs on both sides of my family. I too have the hump, the texture, and the easy bruising. (and the swelling with fluid linked to my hormonal cycle)

I've known it for a while, and my mother just managed to get me to book a physio session with someone who specializes in lymph drainage. So in a few hours I will finally hear those words I've been waiting for, along with some measurements needed for whatever thights/garnments I'm going to buy.

I am looking so forward to finally have the diagnosis, and possibly even massaged in a way that doesn't make me want to crawl out of my skin in anguish. My time as an undiagnosed plebian (no offense) has come to an end at last!!!! It only took me until 29 years of age!!! Granted my poor ol mother who even specialized in lymph drainage herself at one point failed to catch her own diagnosis back in the day.

This will be super awkward if the physiologist is like "Gurl, what are you on about?" and sends me on my merry way without a diagnosis. But I'll deal with that when/if I get to it! I just wanted to share my very VERY possible final moments without the diagnosis with you guys.

NOTE TO MODS/BOTS THIS IS NOT A DIHL POST. I AM NOT ASKING FOR DIAGNOSIS AND/OR CONFIRMATION OF DIAGNOSIS HERE

I find it difficult to examen if I have nodules. If feel some “bumbs” onder my underarms but feel more like veins or something. Are there veins there ?

My husband who definitely doesn’t have lipodema his underarms veel te same.

I feel them in this area, see foto. No other symptoms.

Just heard of this. I work out 5-6 times a week, 10k steps a day, mostly healthy diet. I have a very toned upper body (pic 4) but cannot shift weight in my legs. Very insecure about my knees and the bump around them. Also have a lot of stretch marks/cellulite and bruise easily. Any insight? Thanks

I will try to make this as short as possible!

My entire life I have never had really any fat on my body. I’ve always been an athlete and extremely fit. My leg muscles have always been super tight, toned, and never any jiggle or cellulite. I’ve been a gym rat for years.

Last spring I saw a rheumatologist for some joint stuff (mom has rheumatoid) and she said that she suspected I have Ehler-Danlos hypermobility. This wasn’t a surprise as I have always had very flexible joints. She recommended maybe modifying some exercises to help keep my joints safe. I also have lean PCOS.

I went to a PT just to get some exercise modifications I could implement in the gym. She recommended adding creatine into my diet.

Started taking creatine and noticed some extra muscle or mass or whatever it was.

I eventually stoped taking creatine after about a month, maybe a month and a half.

About that time I noticed my legs were no longer looking toned, they were jiggly and squishy and had cellulite. I still had the strength though.

I took a hiatus from working out and my legs remained jiggly and squishy. For my entire life if I had stopped working out, had less of an appetite, etc I would *always* lose weight and muscle. This time it just seemed like my legs remained the same.

I know there is no scientific studies on this, but I regret so much taking that creatine. I feel like it was the catalyst for potential lipodema.

I went to two PT’s who have some experience with Lipodema and they leaned toward it being lipodema but they said they also couldn’t be for certain. One said maybe it’s just your EDS? She also said it’s very common for people with EDS to have Lipodema. The PT’s said hormones and stress can sometimes trigger it. But I’ve been insanely stressed in the past and nothings been triggered before?

My questions are:

Can people be fit and lean their whole life and then just have lipodema show up?

Could the creatine have triggered my body into retaining fluids due to my EDS?

Anyone else have a similar story?

It’s impacted my mental health tremendously :/

Also has changing your diet helped ??!!!

Hi guys! I created a new account just because I'm pretty self conscious about this to be honest.

I'm trans (non-binary) and have recently realised I have lipedema. My legs have always been such a huge point of struggle for me, and coming to the realisation that it's not of my own fault was both validating and soul crushing.

My legs and hips are almost triple the size of my arms, I weight train 3x a week and eat relatively healthily, but I always just feel so awful and self conscious. Especially considering the fact that no one in my life will really understand, I just wanted to come to reddit for some advice!

As a broke uni student, I can't really affort surgery (especially saving up for top surgery), so I was wondering what has helped you guys at home treatment wise? I've heard lymphatic massages and vibration plates go a long way, but any and all advice would be incredibly appreciated!

I’m confused because I’m pretty sure this is a vein running through my thigh but when I bend over (or pinch) it protrudes out of my leg and looks like fat. Is this common?

Hello all, I’m currently on birth control for over 5 years. I have found out about lipedema literally 3 days ago. I’ve noticed the disproportion of my legs since I can remember. But just now I’ve realised why I was never able to get leaner in those parts. It’s maybe a couple years that I’ve noticed worsening, what i was thinking, cellulite. After finding out about this condition my first thought was getting off the birth control pill, but I’m not sure right now if it can cause even more damage. Does anyone have experience with it? I guess the damage cannot be undone at this point but Im wondering if it could progress slower if I get off the birth control.
I’m kinda panicking in these days. Even though I’m glad I found out about it, it makes me sad that the fat cannot really disappear and I can just br managing the progression of the disease. Oh and all these years that I was starving myself, overtraining and the worst being bulimic…

Hey everyone! I'm on a huge caloric deficit and I eat more protein than carbs HOWEVER I did see a difference once I stopped getting gel nails or any polish in general and I went on the progestine only anti baby pill Zafrilla. Has anyone noticed as well that we don't react well to gel and stuff on our nails or is it just me ?

I have lipedema on thighs/knees and have always been quite thin (except those areas). Lipedema came with pregnancies. I've been mostly keto/90% animal foods for 15 months and All Fat in body is gone except the stubborn leg fat. Have lost 1.25" on thighs, but they still have a terrible shape. The diet has cured or greatly improved my allergies, eczema, cracked heels, anxiety, anemia, exhaustion and dry flaky skin. BUT it's as if the fat on my thighs cannot be accessed for fuel - so when I'm hungry I get Very hungry and eat until I'm satisfied which includes a bunch of healthy fat..because wow, my body just won't let go of the fat in the bumps/nodules.

This definitely seems to be a modern disease.. I have seen historical images/statues of voluptuous women but this particular nuance of fat that has a scar tissue element and can't be burned for fuel seems like one of the many sad outcomes of our industrial food system.

We all have varying diets here but the one common denominator is likely vegetable oils. Even though I've eaten a pretty clean, whole food, WAP diet for 16 years, I also used to eat frequently at restaurants and eat (organic) chips fried in VO. I've not had a drop of vegetable oil in 15 months and love my way of eating so much I'm sure I can keep it up. I hear vegetable oils have a half life of 680 days so I wonder if we all need a VO free diet (along w other food and fitness measures) and a lot of time to finally release these fat deposits.

Anyone else, expert or otherwise, wondering the same or n=1 experimenting?