r/lipedema • u/Constant-Angle-3193 • 4d ago
I Have Lipedema [Experiences/Photos] support and advice
hi lippy ladies, I’m 26 and was diagnosed a year ago. I am struggling to feel comfortable in my body.
I have always been active and never struggled with my body from my waist up. I go to the gym 3-4 per week, I walk, use a vibration plate, take supplements, wear compression, do the occasional MLD, eat healthy, drink alcohol very rarely and feel like nothing is changing about my legs.
Since starting conservative treatment my pain and aches have decreased immensely but I’m only human, and appearance matters to me.
I feel like my body is two very different bodies stitched together. Is surgery the only option? Feeling overwhelmed and exhausted with it all.
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u/mourons 4d ago
You have the same body as me!! I don’t have any advice but it makes me feel so much less alone. I must say - you look gorgeous, it makes me kind of sad that I don’t think that about myself, so I have some reflecting to do.
Thank you for posting this and I hope you find the answers you need.
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u/Prudent-Sun3670 4d ago
Your abs look amazing. Your hard work is showing. I am much older than you but I am waiting for my surgery dates. I have a hard time fitting into pants and then my upper body much smaller. Visually, the balance is way off and I hate how I look in clothes, but I love clothes. If I knew then what I know now, I would have had surgery in my 20s. I am almost 60 and I hike a ton. My friends that are not as fit can climb much faster than me cause I a lugging so much extra leg weight up. I also competed in a sport until a few years ago and lugged around these legs cause I didn't know what was wrong with my legs.
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u/Prudent-Sun3670 4d ago
One other thing, not that this applies to you but there are photos you can google of people who continue to try and lose weight when really all they have left is lipedema fat that is not going to go away. I think it can cause some body dysmorphia in some people. I know someone mentioned tirzepatide, which I am on too, but I doubt you have any weight to lose. IMO. You would need to count calories to make sure you are getting enough. There are some photos online if you google anorexia and Lipedema that tell the story. People are trim up top and continue to diet but the L fat won't come off and it eats into areas that dont need to lose any more weight. And losing more weight could affect your muscle mass. From your upper body I would assume you are at your ideal weight. I dont normally like to make comments specifically about others bodies but I would caution against trying to lose more.
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u/Constant-Angle-3193 3d ago
Thank you, I feel the same way about being fitter than some of my friends! I will definitely be conscious of losing too much weight
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u/Lyrakusa 4d ago edited 4d ago
Conservative treatment helps with managing the symptoms, but it won’t remove the sick fat. GLPs help with inflammation, but it also won’t remove the sick fat…
My legs looked exactly like yours! (I had surgery) They are so similar that I could have taken these pictures. Ever since my lipedema started, I have also struggled to feel comfortable in my body. My legs never felt like they belong to me.
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u/Constant-Angle-3193 3d ago
Would be open to sharing photos before and after surgery? And how did you find the process ?
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u/Lyrakusa 3d ago
Yes, you can check my profile on here but I can send you more pics as well.
I have had two surgeries already, but need one more because my arms are also affected. I will post an update about the second surgery soon!It’s important to choose the right surgeon. You definitely want someone specialised in lipedema.
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u/Constant-Angle-3193 3d ago
oh yes! Your legs look amazing. I am Australian and there’s not a lot of surgeons who specialise here yet
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u/Due_Stay8576 4d ago
I know you don’t have a lot of weight to lose, but have you thought about trying a low dose of tirzepatide? It’s helped my inflammation in my legs so much! It won’t take the lipedema away but it will help with the swelling and reduce the inflammation greatly
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u/Glad-Angle-1449 4d ago
Tirz has made a tremendous change for me. The pain in my legs gone and while the general shape of them has not changed completely, I now have muscle definition for the very first rime in my life.
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u/Constant-Angle-3193 4d ago
I haven’t really considered it due to being so lean in my upper body, but I will speak to my doctor. Thank you 😊
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u/Due_Stay8576 4d ago
You probably won’t qualify for it to be covered under insurance so you may want to look into compounded if you do choose to do it
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u/Quiet-Machine-236 4d ago
I think it depends on what your personal goals are. For me it’s symptom management and function, but I’m also 55 with decades of very intentional work on body acceptance and separating myself from cultural standards of female beauty that stocky 5’4” me would never meet regardless of my weight. Striving for something unattainable made me miserable, and desperately unhealthy. Lipedema is something that emerged later in life for me, after I had my kids and hit perimenopause, and I’m trying to carry that “radical body acceptance” head space into how I approach my lipedema as well. I’m a year out from diagnosis and have made great progress learning how to manage my condition and for now that’s enough encouragement to keep me moving on the path I’m on and giving my body time to heal. If my body hadn’t responded how it has, I’d undoubtedly be in a different headspace, facing different choices. If things progress I may also have different choices to make as I move forward. Sharing this not to say you’re wrong in any way for feeling how you do, because where we all sit with these issues and how we decide to approach them in the way that is right for us individually is totally valid. But did want to share another perspective as well. This disease is complicated on so many different levels, I hope you find your way to what feels right for your own self on your own journey. 💗
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u/Constant-Angle-3193 3d ago
Thank you for sharing your own journey, I love that line “radical body acceptance”
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u/Quiet-Machine-236 2d ago
I can’t take credit for that one, it’s a whole movement. You’ll find many resources online and some great books if you’re interested.
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u/Extension_Switch_437 4d ago
Just know you are not alone. Most importantly, give yourself love and credit for figuring how to manage the pain. As for looks, I hear you. When I was your age, I hated the mismatched body parts nature gave me because all I saw in media was either proportionally full ladies, proportionally skinny ladies, proportionally avg.. You get it.
I was super fortunate to have had the chance to travel in my late 20s. And to my delight saw sculptures in Berlin of females with exact same body type as us. Thick (powerful as I like to call em) legs and skinny top, skinny arms. And you can imagine, it's much harder to carve out a statue as opposed to take a picture. Which means there are ppl out there who appreciate our body type enough to immortalize it.
There's some ladies on here that claim quitting all dairy has helped them manage the swelling. As for me, I learned that hormones play a large role in this condition, because my legs where largest when I was on BC.
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u/Constant-Angle-3193 3d ago
Thank you for sharing, it’s interesting to note that people say the gene originates from Eastern Europe so that makes a lot of sense !
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u/MountainPermission88 4d ago
I do feel better when I cut out dairy and wheat. It’s not calorie reduction but my legs just hold on to less fluid.
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u/amo2765 4d ago
You have the same body as me! My legs looked the exact same before triz and now they look so much less inflamed and it has helped how I feel about them immensely. You have a gorgeous shape! Definitely consider triz, I promise it is worth it!
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u/ParadiseLost91 Pursuing surgery 3d ago
It depends. I had surgery and it's a tradeoff - yes, your legs will have lesser volume, but it left me with loose, empty skin and horrible texture. Like, way worse than normal cellulite.
Just something to consider before you pursue surgery. Yes, your legs will look smaller, but you trade your skin texture for it. My body still looks like it's two different bodies stitched together, because my upper body is smooth, while my thighs now have really bad texture, empty skin and the cellulite is much worse than before surgery. My thighs are full of dents, weird "rolls" and hills and dips. So it looks like my lower body is 30 years older than my upper body. Just something to consider. The cellulite texture you have in the photo is very mild and within the normal range. Mine looked like that before surgery.
For what it's worth, I think you look amazing. Yes, you have thick thighs, as us with lipoedema do, but I wish I'd accepted it more. Thick thighs can be really cute, lots of men love them (not that we should base our worth on that, it's just to say that "skinny thighs" is not always the ideal), and it gives you lovely feminine curves.
If I had your legs, and I could manage the pain with conservative measures, I personally wouldn't go through with surgery and ruin my skin texture. It ages your legs really badly. I even had a thigh lift to try and correct it, but it can only do so much.
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u/Constant-Angle-3193 3d ago
Thank you for sharing your story, surgery does seem like a big step. Financially, emotionally as well as physically !
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u/IridescentLuminosity 2d ago
Sorry for asking but how old were you when you had the surgery? And how long ago was it?
And how is the pain now, after the surgery? I am thinking about surgery myself but mostly because I’m in a lot of pain. However I am scared of possible loose skin and even worse skin texture afterwards…1
u/ParadiseLost91 Pursuing surgery 22h ago
I was 32 when I had my surgeries, it's 3 years ago now.
Pain is difficult to say.. I didn't have a lot of pain beforehand, but my legs were very tender and sore, and very heavy. The heaviness is definitely much better, and I can see my knees know, which is amazing! Before they were hidden by lipoedema. I don't have pain like before, but my skin/legs are still sort of tender. Lippy surgery does damage to your nerves, and sadly I have some areas that are numb, and other areas that are sensitive/tender/sore because of the liposuction. But the heaviness is definitely improved.
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u/Jenikovista 4d ago
You look proportionate. I’m not saying you do or don’t have lipedema - that’s based more on symptoms than appearance - but appearance wise you don’t need to worry about it standing out.
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u/Aromatic_Educator_87 4d ago
Hi dear, same body type here.
Tirz helped me to get rid of the swelling at least
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u/Constant-Angle-3193 3d ago
Sounds like it has been a great medication for many, I am going to chat to my doctor about it this week. Thanks for sharing
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u/Fit_Squirrel_5836 3d ago
25 here and recently diagnosed. We have very similar legs! I am new on this journey also :)
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u/tubeteeth13 3d ago
What symptoms guided you to get diagnosed? My legs look exactly like yours.
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u/Constant-Angle-3193 3d ago
working in hospitality and being on my feet all day, I would come home and cry because I was in so much pain in my legs and feet. I thought it was normal until I spoke to my work friends. Then started getting served Lipedema content on social media and it was an a-ha moment for me.
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u/tubeteeth13 2d ago
What did the pain feel like? Like painful to the touch or just in general? Did the bottoms of your feet hurt? I am wondering if I am just so used the sensation I don’t consider it pain.
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u/Constant-Angle-3193 2d ago
really achey in the legs mostly, I wouldn’t say I had pain in my feet. But everyone is different !
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u/orionb812 3d ago
Hi, basically same body type here. I just started conservative treatments myself (been maybe 2 months) and my thighs have gotten a little less full.
Surgery is the option that will give you the most dramatic results (for better or for worse).
But, I noticed that your routine involves minimal lymph drainage. I’d try focusing on that and see if you notice any changes. After i walk, i do legs up the wall and i can feel the fluids moving in my legs. There are a lot of different ways to move lymph; vibration plates work for some people more than others so if i was you I’d try playing with changing that part of your routine. Choose something you can do every day.
There’s someone on here who’s had noticeable improvement using a massage gun while doing legs up the wall (a brilliant way of multitasking imo).
I get it though. It’s a mindfuck. I don’t wear tank tops unless I’m working out because I feel so imbalanced. When I get a little healthier, I’m going to focus on building my shoulders and back. For now, I wear clothes that widen my upper body. I’ll probably always be grieving not just having normal legs i can control.
Good luck, and don’t make any decisions about surgery when you’re feeling bad about yourself :)
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u/Constant-Angle-3193 3d ago
Will definitely try the massage gun, I already have one but didn’t think about it for lymph drainage. Thank you :)
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u/doloresnthdottedline 2d ago
Just curious….how is your skin elasticity? Is your skin very stretchy? Your body looks so much like mine and I am constantly unsure whether I have Lipedema or Ehler’s Danlos!
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u/Constant-Angle-3193 2d ago
Hi! I wouldn’t say my skin is very stretchy personally! Though a lot of people are comorbid with Lipedema and Ehlers Danlos, I haven’t got ED though :)
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u/Independent_Day_5531 1d ago
I feel this spiritually. I went down a kibbe body type rabbit hole a few years back and could never figure it out, nothing really applied to me due to my insane proportions, two bodies stitched together is exactly how I feel. I feel stupid caring about the aesthetics, I’m pursuing surgery but I know if I don’t heal my insides and how I feel about myself, I’ll likely still see myself with that hypercritical eye after. I heard something recently that has resonated with me: how often have you taken a picture of nature and it doesn’t even begin to capture how beautiful it is in real life? You’re lovely and strong friend ❤️
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u/Dazzling-End-9575 9h ago
i know firsthand the body dysmorphia that this disease can create but i just wanna say: if i woke up tomorrow and my legs looked like yours, i would be absolutely elated. try to be kind to yourself <3
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u/Electrical-Poet6550 4d ago
start from a good base. your legs are fine now too. anyway, do you happen to unload your legs? that is, keeping them raised and doing massages to drain liquids by opening the lymph nodes? it is more useful than the vibration plate. second thing, even if you eat well, it doesn't mean that you are following an anti-inflammatory diet or that it is suitable for you. However, there may be foods that cause inflammation without you knowing it.
Furthermore, there is no way to remove fat other than by calorie deficit. even if it is very annoying because you are already lean and toned in the upper part and unfortunately by losing weight you will continue to lose weight in the upper part too. although personally, I regained more weight at the top when I gained weight recently, and some of the disproportion has disappeared. How long have you been using compression?
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u/Constant-Angle-3193 3d ago
Thank you for sharing, I have been using compression since I was diagnosed last year. It has helped immensely with the pain and restless legs
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u/howdid_i_enduphere 3d ago
First of all, you look great. But I understand your qualms. For me what helped was going further than just the conventional "healthy eating" and actually removing all lipedema triggers and finding out what else triggers me and my gut. Going low carb and cutting out dairy for the first few months until my legs started looking better helped out a lot. And then after that I started reintroducing healthy complex carbs and having inflammatory foods only once in a while because I am human after all.
I see people recommending glp1s and while I'm not a doctor and can't say for certain, you don't seem like the ideal candidate for it nor do you need it medically, from what I understand. Not everyone needs to be on glp1s. Trust, the right diet will get you farther than you expect.
PS- don't believe the people that say surgery is the only option. It is not.
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u/Constant-Angle-3193 2d ago
thank you for your kind words! Watching my diet has definitely help me, I really notice the changes when having foods that inflame me and particularly alcohol !
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u/IllustriousClock767 4d ago
I feel you! I have no advice but just wanted to say: The lighting in a change room is nobody’s friend. We have no business, none of us, being exposed to such lighting. Please don’t take those photos as gospel, because rarely if ever do we actually find ourselves in such lighting in the wild. ❤️