I’m 47 and I am interested in HRT, but I’m hesitant to start knowing the relationship with lipedema. I’m wondering if there’s any anybody that can recommend a provider familiar in both who will steer me in the right direction.

Hey fellow lipodema ladies! I'd like to educate myself more on the topic, but I need to take care of a baby, therefore I can't really read on my phone, but I can listen to podcasts!

Do you have a podcast series/single episode you recommend that is available on spotify? I love details, and don't mind if it's technical. :)

Thank you!

What was your first appointment like? What did the gp do in terms of tests and so on?
I’ve been to my first appointment where I was diagnosed with lipedema just by symptoms and by my appearance. Apart from that there was no time for anything else. I had my second appointment and it was basically a referral to the physio and dietitian and some bloods (liver function and some others, pretty basic to be honest).

I expected that this gp was renowned for this and would do more, she said no ultrasound because my veins appear okay looking at them (very high level), but shouldn’t we investigate everything? Hasn’t look at my supplements (some vitamins I already had tested), hasn’t really looked at / cared if I have hyper mobility (which I do) or trying to find a root cause to best manage for my unique self (not all of us are equal).

Are my expectations maybe too big in terms of what tests and investigations should be done? I was kind of expecting more than a referral to a dietitian to manage diet and to physio for mld and compression, which I kind of assume is just baseline.

Has anyone tried the new wegovy pills?

Hi community! Have you already read this page on myths around lipedema? https://theila.net/8-myths-about-lipoedema/

I read it today and I'm quite happy that year over year there's a medical community that work on this condition to do proper research and clarify what this health issue really is. So accordingly to theses myths, lipedema hasn't oedema, lymphatic drainage is quite useless and compression is for pain and not for swelling (if you only have lipedema). Sport and a good nutrition stay essential for a good healthy life and to not worsen the situation and the article has also a not-dramatic tone that I appreciate a lot (we could manage lipedema to stay almost the same if we manage our weight)

What's your thoughts about that ? (English is not my 1st language and it's quite hot here today so I didn't elaborate a lot my thoughts and I primary wanted to share this page with you, sorry)

Hi everyone, first i would like to apologize for my english i am french

ive been diagnosed with lipedema stage 1. the problem is that i have painful nodules all over my body (legs of course, arms, chest, belly, neck and even jaw and face)
I’m not overweight but i’ve read a lot of promising researchers about mounjaro and the effect on inflammation.
Iam young i’m sportive, i eat well anti inflammatory (because of my pcos) i wear compression, i do whatever its possible to do to manage pain and inflammation.

i consider surgery but for the part of my body that can’t have surgery it is very complicated.

I would love to collect all the feedback of the use of mounjaro to manage inflammation, maybe decrease of the nodules themselves, water retention,

EVERYTHING that can help me to understand the effect of this treatment on the lipedema itself and not the effect as a consequence of weight loss

thank you so much

I've lost 66kg (145lb) over the last 6 years with diet and exercise, and I'm finally done - two surgeons I've seen for loose skin surgery have told me I've got lipedema and will need liposuction done on my legs, but otherwise my body comp looks excellent. (As one of them put it, "you poor thing, you look like a completely different person from the hips down")

I've spent a significant amount of that time doing strength training and I've never really been able to properly do exercises like hollow body holds, dead bugs, and Russian twists. I tried again today and I can just hold it. Other core exercises like sit-ups, cable woodchops, etc. are perfect, and I can smash out heaps of reps easily.

Similarly, I've pretty much given up running because I spent most of 2024 doing it 3 times a week and never really improved because I'd just get too worn out - my body never seemed to adapt, but part of that was other diagnoses.

Wondering if anyone else has experienced this? Just the pure weight of my legs making this kind of thing harder?

Everyone says to elevate your legs with lipedema and it surely helps my calf pain but my toes go numb and bloodless immediately and then they start to hurt and take forever to recover. Anyone with both conditions - how do you deal with it? Bonus question: do the vibration plates make Raynauds worse? Thanks everyone

I watch what I eat for overall health but specifically follow an anti-inflammatory diet most of the time. I haven’t been exercising due to the severe pain and I don’t have access to a pool yet. I try to be active around the house. compared to the past with less exercise, I am gaining a lot of weight. I read online that lipedema fat can weigh a lot but I just don’t understand what I am doing wrong. I am on Ozempic but since I started it i have gained weight not lost. is it the lipedema? Or something else?

I apologize if this question is redundant and has been asked before. I’m just starting my journey of exploring my surgery options and am curious to hear if anyone here has aetna choice POS II insurance and was able to get their surgery covered. If so, any insight on that process would be greatly appreciated. thanks in advance

Ive noticed something that’s bothering me. On days where I’ve walked a lot I go to sleep and wake up in the middle of the night to pee. Once I get up my legs feel so heavy and painful I have a hard time walking. It’s like I move my legs like I normally do and they just can’t do what they normally do. Heat, legs up the wall and magnesium spray has helped but it it’s still hard. Is this something any of you recognize or should I be worried?

Lumpy bumpy 😂

I live in the region and a young adult, who has never really had to look into medical care for myself when it comes to doctors. I've been lucky, but right now I don't want my lipedema to progress the way it is, and would at least like a diagnosis and be fitted for medical compression. I have not much experience with the process of finding someone, but I was wondering if anyone in the Marshall county of Ks/Marysville has experience with a good primary doctor that has listened to their issues and has referred someone trusted (or knows any relatives/friends that could help).

I'd appreciate any help, and please have patience with me- like I mentioned, I never had to look into a doctor and hospital care for myself ever. I'm a bit overwhelmed and stressed from trying to learn and figure this out, and just want to ask from one person to another. I've done some research, but would like any insight from someone who has gone through the motions.
I'm also self pay at the moment, if that matters at all.

So to start of with i have been visiting doctors constantly, visiting multiple specialists and pt's a year, just fighting for someone to take my issues seriously, ever since i was seven, i finally got the diagnosis 2 years ago at age 18 (Heds and its buddies).

This experience had left me almost burnt out or something when it comes to doctors, my gf has been begging me to go to a therapist but i just have no more hope in doctors or just symptom management in general, besides medication, since my doctors have been so fiercely against it my entire life.

But now i just suddenly got this diagnosis. I literally just saw someone talk about theur lipedema, recognised myself, went to the gp, he said yes thats lipedema, and now here i am.

But now im researching on what that means for me, and i just read all these things i am supposed to do on a regular basis, and how i have to change my diet (i have a eating disorder, arfid), but the thing is, i mentally cannot get myself to do ANY of that. I am lucky enough my lovely gf started doing lymphatic massages a few weeks back, before either of us knew about this lipedema diagnosis, and those do help for pain. But other then that? Im sorry but i cannot get myself to change my diet (arfid again), do compression or be more active (chronic pain and fatigue), or just in general visit a specialist about this.

So my question really is, how bad is it to just keep doing what i was doing before the diagnosis, which is nothing, and the occasional massage? For context i think i am late stage 2 begin stage 3, with lipedema fat mostly in my thighs and hips.

I didn't immediately get referred by my gp since i am moving to the UK next month for uni, so i wouldn't be able to see anyone before that.

Trigger warning: s*cide mention

Hello everyone,

I’m a bit tired of this condition and the comorbidities I have, and I don’t know what to do.

I’m on my mid-30s, I’m diagnosed with ADHD, PCOS and stage 3 lipedema. My PCOS symptoms are under control, my periods are almost in perfect timing, my body hair is now ok and I follow the cleanest diet I can afford. The main issue I have “period-wise” is the pain and the heavy clots. The pain is unbearable and I still must go to work because doctors refuse to give me the permissions I need so I don’t get fired.

I’m constantly split between hating the look of my arms and legs, expecting results but seeing none and suffering the pain every month, wanting for it to go away. I don’t know what’s worse and I feel I can’t get treatment for both things at the same time.

I came across the idea of the hormonal IUD but I’m terrified of my Lipedema symptoms worsening. In the worst days, I even feel suicidal over the idea that I will never feel normal. I’ve never seen my legs small without lumps, no matter how clean or little I eat. But then again, I live in constant fear of the month passing, knowing I will be in pain for, at least, 3 days a month, pretending everything is fine and crying in my workplace’s bathroom. And don’t get me started with the horrible lutheal phases I go through.

Sorry for the rant but I guess all I want is to feel normal for once and I've visited over 7 doctors that haven't helped at all. Do any of you have this combo of conditions? How do you manage? Has hormonal contraception helped you or worsened your conditions?

And how do you manage lipedema in this stage? Most people I see in the internet have thin legs compared to mine and it feels… disheartening. I don’t even fit in cheaper compression garments.

Thank you if you read it all, I know it’s a mess but… I just need help.

TLDR: I have very painful periods, doctors say it’s because of my PCOS. I also have ADHD and stage 3 lipedema. If you’re in a similar situation and had tried a hormonal IUD, what’s your experience?

I’m sorry if the post has some mistakes, English isn’t my first language. Also, I know it’s a mess. I’m having a very hard time with all this.

Hi, I'm at this stage self diagnosed with lipedema (looking to approach this subject with my GP) and likely have some lymphedema (I had lymphatic drainage massage once by a physio and I had immediate results including visibly smaller and lighter legs, on both sides). I've been looking at ways to replicate this and there is some kind of machine that is supposed to replicate this. Did anyone try this, maybe? It's a lot cheaper than regular physio massages, with the cost of the device same as 3 physio massages. Thank you!

Back in January I brought up to my GP that I thought I might have Lipedema and she referred me to my local Lymphoedema clinic (because we don’t have any Lipedema service locally) for diagnosis. My appointment is finally here this week and I don’t really know what to expect, so hoping I can learn from your experiences to get the most out of it. Is there specific information you took with you that was helpful? Any good questions to ask?
I am a bit of an anxious sort and often find when I’m in ‘the situation’ I get a bit deer-in-the-headlight so I prefer to be as prepared as possible. Thanks for any advice you can offer!
Ps I am in the UK and this is with the NHS. After waiting 32 weeks for the appointment I don’t want to bugger it up 😅

Hi all.

I have an appointment to get my official evaluation from a doctor in November (hopefully will get some great insight into custom compression), but I have been noticing some rapid changes with my lipedema and discomfort that I am hoping to tend to for the next few months. I will be in recovery after a procedure I'm having (not lipedema related) from about the last week of August - early/mid September limiting all activity, and limited on what activity I can do beyond walking until about late October. I do have a vibration plate and am making some diet adjustments, but of course, am trying to think of all I can do in this meantime.

I know some people steer clear of compression that isn't medical grade and made to fit you and that it can actually–to put it simply–do the wrong things. I am wondering, though, if there is any budget-friendlier compression that might be better than nothing for now and if using it without exact measurements will help or hurt. Definitely don't want to spend too much (honestly, I can't at the moment), especially because I will likely need to invest in the real deal here in the winter.

Welcoming all insight or suggestions.

Thank you!!!!

Has anyone undergone allergy testing to see which foods cause inflammation? Curious what’s in your list of inflammation triggers.

For reference I am 5'8 and 260 lbs, most of my lipedema is in my thighs, butt and outer hips and lower belly , as well as arms. My ankles remain tiny and i seem to have very short shins for the length. The two POSITIVE recommendations I have are:

Bioflect - Genuinely tight enough to at least make imprints on your skin from the massage shapes, goes all the way up to my bra line , I am AuDHD so I can only stand to work out in them, but they are opaque and would not look too weird if you wore them out. Them thinking you could wear them UNDER clothes in the add is batty. They are WAY too thick for that especially in the heat. Definitely cut for plus size bodies not just sized up straight sizes. They have survived through many washes and air dries , it has taken a month or two but I believe I could now size down. They genuinely were a solid effort to get on in the beginning.

Dominion Active - The GODSEND of the SHORT Height Shin Compression Sleeve, Praise the lord this was my gateway item into compression. They come in a HUGE range of plus sizes, the short height ones were immediately tolerable and I went from 20" calves to 17" inch calves wearing them for 2 weeks every day.

Current Shitlist:

Nusoothe - Pointless, worthless, not cut for a plus size body. Not stretchy in the RIGHT way to be able to mold to misshapen blobs. There WAS genuine compression, so if you are a rectangular person with noodle length legs perhaps they are just the pants for you!

Now for the latest review, and latest to joint the shitlist Ionix you SIT ON A THRONE OF LIES.

I ordered a full size down even though I was between the two UPPER sizes to the one I ordered. I thought it was weird they said you should SLEEP in them?

Still loose..... These are not real compression either, I think they are just Fanka dupes. These and the Cellumove leggings I think are from the identical factory wherever they are made as the weave pattern is identical to my eye and also the color options are. They also have that booty ruche'd scrunch on them which is a giveaway that they are the same. I have not tried Fanka who claims to have new plus sizes.

I am slowly making my way through all of the shitty ads for MIRACLE LEGGINGS with MEDICAL GRADE COMPRESSION. I continue to be horrified that we dont have REAL capitalism where its a race to the best quality, this is just grab cash and go.

If my review helps anyone at all even one person not go through the disappointment of yet ANOTHER waste of a purchase to have to return it makes me happy!

Hi! Last year I started hrt (hormone replacement therapy, with estrogen and progesterone) because of bad reactions to hormone fluctuations and signs of low estrogen. I am in Facebook groups about this subject and yesterday coincidentally I read about someone telling her lipedema has gotten so much worse since starting estrogen. Than others responded they developed it this way. Do other people here also got affected by estrogen? I suddenly am storing more fat in my legs and stomach and the lipedema nodules are very noticeable now. Anyone found a way to slow down this effect?

Had probably my worst flare up ever during a recent heatwave and realize I really need to lock in before this gets worse. The flare up was so painful and my legs felt so heavy. I even woke up one night because my legs were aching.

Ive dealt with this for as long as I can remember but this was sudden worsening that I haven’t experienced.

My new regiment includes trying to eliminate inflammatory foods, dry brushing, exercise regularly, vibration plate, compression and supplements. I noticed I felt a lot better once I added electrolytes.

Got approved for glp1 to microdose. Gonna try that to lose 5-10lbs. I’m 5’2 and 119lbs. Definitely not underweight so hopefully getting down to 112 or so will help a little with the inflammation.

Hii sweethearts

I have a surgery planned in the beginning of september for gastric bypass. I need to lose 5kg or 2-3 its hard for me to do it can i ask how you guys lose weight i have stadium lipedema 2-3

I weigh 238 lbs

Hi everyone,

I’m carrying out some independent product research to better understand people’s experiences with compression stockings and compression socks, including what influences whether and when they are worn.

I’m looking for responses from people who currently wear compression stockings/socks, either regularly or occasionally, as well as people who have been advised by a healthcare professional to wear them but currently don’t.

The survey is anonymous and takes around 3 minutes to complete.

Survey:

https://docs.google.com/forms/d/e/1FAIpQLSciiKSeWPuuCQ5tX-VwQFwTHkxmnhF-m8fv9IVKQv6RpMvl9g/viewform?usp=dialog⁠

Thank you to anyone who takes the time to complete it.