Lipedema diagnosis? You don’t have pretty legs and never will (WTF?)

A reader writes:

First of all, I’m German. So please excuse me if I mess up with grammar or spelling.I’ll do my best, feel free to correct me. (Moderator note: edited for grammar/punctuation/spelling)
2 Years ago one of my legs started to hurt. I went to my “Hausarzt”, this is the doctor I first go to if I have any health-issues. (Fromm the story I read here I guess this is what you call a “GP”?). First of all: he’s a great man who tries to see his patients as whole persons and treat them like that. He sent me to a specialist for an ultrasound of my veins. He told me, that he thinks it might be lipedema or lymphedema and tried his best to explain what this means.
The appointed day of the screening was a couple weeks later so I had time to do some research of my one. I found out, that a lipedema was a chronic desease (genetic-based) which tend to become worse with the years. The small arteries are too permeable so that protein pass out in the tissue an gets connected to fat and water. As a result the fat is not accessible for “normal” weight loss cause it’s irreversibly bound in the tissue. As a further and more problematic result this can cause severe pain (because of the pressure in the tissue) and in some cases lead to immobility.
This was a scary potential diagnose. So I went to the specialist and hoped it would be something else, less serious.
The old man did the ultrasound of my legs. I asked him quite a few times what he was seeing on the screen and what he was doing. He ignored me. Then he said. “Yes, it’s lipedema stage 3”. I asked him how he could know that (because I had read how to diagnose lipedema and every info said “ask the patient about the history of weight”, “ask if she tends to get bruises on the legs”, “feel the tissue and fat under the skin, if it has a special form”). He then (after he had his diagnosis) poked one finger into my leg and said “well that’s a specific palpation finding”.
I asked him what that disgnosis means and if I can do anything to stop it becoming worse. He said “no, perhaps liposuction” (later I learned that liposuction is in fact the only thing, that can “heal” a lipedema but isn’t paid by our health insurances). But there are a couple of other treatments that at least can ease the pain like surgical stocking.
But beside his rough tone, his bad manners and his denial to answer my questions, the thing that shocked me most was his answer to my question what this diagnosis means exactly. My question was about “will I have pain, will it get worse, can you please explain to me what’s happening in my body?” But the Doctor had his very own idea of the meaning of the diagnosis, lipedema, (which he told me while I stood in the neon light half naked):
“Well, you know you don’t have pretty legs and you never will.”
Yes Doctor: That’s the Problem! Not the Pain, not the potential immobility. The Problem is that my legs will never be pretty! I should have asked him if he thinks he is here to be the judge in a fucking beauty competition!
It’s not a concern if I can do my job for the next 30 Years or if I will have problems with the stairs to my home. For me, as a women, my only problem can be that this old man thinks my legs aren’t pretty!
But I was shocked, I was scared and I nearly started to cry. Because he offered no further advice or treatment, I asked him a few times “But what can I do now?” And he turned around and left the room.

I wrote this, because even if he didn’t said I needed to lose weight (well, with this diagnose it would be ridiculous, cause the illness is :”You’re body binds fat in the tissue that can’t be removed through diets or sports” but this bullshit about my body isn’t pretty is both “fat shaming” and “misogynistic”.

Lucky for me, I have my regular doctor who tells me about studies about fat and thin people where fat people who exercise are healthier than the thin ones who don’t. And I have my lovely boyfriend who went crazy when I told him about the doctor’s opinion about my legs. “What the hell does this A### think he is telling you “you are not beautiful.” This dumb old Derp doesn’t have a diploma in “Beauty judgement” and no right to say anything about you. Your legs are wonderful and beautiful…..”

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  1. I googled “Hausarzt” and found that the Wikitionary says it basically means “family doctor” in English.

    This doctor should be ashamed to still be practicing with an attitude like that. Sorry this happened to you.

  2. Leserin

     /  February 17, 2013

    Hi. Thank you for correcting me! 🙂 And thank you for posting it.
    But in the very last part of the text: “..fat people who exercise are healthier than the thin ones who don’t” it might be my mistake, but the ” thin ones who don’t” at the end is wrong. It has to be “who also exercise”. It was so important for me that he told me that, because i struggle with my weight for a long time and heared so many times that beeing fat is unhealthy no matter what you eat or if you exercise or….whatever.
    And I realized that i used the term “old man” twice and this could be offensive for older people. I didn’t meant that in offensive way, I should better choosed “oldschool” or something like that because he had an typicall “oldschool doctor attitude” -thinks he knows everything just from looking at you and isn’t interessted in the patient’s view at all (espeacially if it’s a younger woman, i think). (Even now i can’t find the right english word for the thing I mean. We have the Term “Halbgott in weiß” but I suspect that “demigod in white” has not the same connotations )

    Oh, and thank everyone who shared her/his story here, i’ve read so much, and even if it is making me angry to read this storys i think it could give me the strength next time to stand up and say what I think.

    • vesta44

       /  February 17, 2013

      Leserin – All the studies I’ve seen quoted state that “Fat people who exercise are healthier than thin ones who don’t”. I haven’t seen any that state fat people who exercise are healthier than thin people who exercise, which is why I thought you had maybe misunderstood your doctor. Fat people (whether they exercise or not) do survive illnesses better than thin people (heart attacks, cancer, and strokes are examples of illnesses where fat people have better outcomes than thin people).

    • Mercy

       /  February 18, 2013

      Hausarzt is equivalent to GP in the UK and Primary Care Provider in a lot of US insurance contexts. They are usually general or family practitioners.

      This is useful for me to read (if not encouraging), because I’m considering whether to pursue a lipedema diagnosis (as a US-American who’s living in Germany).

      If you want to talk about being fat and dealing with doctors in Germany (or whatever) in private (and in German), Leserin, I’m hereby giving Vesta permission to privately give you my email address, which she should be able to see. Or you can find me on the new “Glorify Base Camp” forum.

  3. Twistie

     /  February 17, 2013

    Leserin, I think ‘demigod in white’ just about sums it up. I’m so sorry you had to go through that.

  4. The Real Cie

     /  February 18, 2013

    Doctors aren’t supposed to be judging people’s perceived beauty, they’re supposed to be treating illnesses. What an inept fool this man is.

  5. There is a huge amount of ignorance around lipedema. Many doctors have not heard of it or think of it as the same thing as lymphedema, and of course it’s not, though there is some cross-over.

    Liposuction for lipedema is controversial. For some it can be helpful, but for others it can lead to lymphedema and a worsening of their condition. Some recent research is encouraging, but keep in mind that the number of patients treated was very small and the follow-up was not very long. There needs to be a lot more research before we can reach any conclusions. Newbies to the topic can read more about lipedema here (be aware it’s not a weight-neutral site):

    I, too, have lipedema. It’s no fun, but I still have a life and I don’t let it keep me from doing most things, including having children (which they sometimes discourage). Personally, I think it’s connected to endocrine issues, so I think it’s important to look for even minor endocrine disturbances (esp subclinical hypothyroidism) but it’s hard to prove that for sure.

    • vesta44

       /  February 18, 2013

      WRM – Your comment makes me wonder if my enlarged thyroid may have been a factor in the problem I have with my lower legs/ankles swelling (the left one is worse than the right). I’m also wondering if the failed WLS I had is also a factor, since the swelling, redness, thin skin, hardening of the tissue, etc didn’t start until after I had the WLS. Right now, both of my lower legs, from ankles to just below my knees have permanently red, dry, scaly skin, and the tissue underneath has hardened (it’s gotten worse over the years and the only diagnosis I can get is “venous insufficiency”, and told to wear compression stockings). The swelling is worse in the summer time, and has gotten to the point that if I don’t wear the compression stockings from the time I get up until I go to bed, even my feet swell. The skin is so thin that even the lightest bump will break it and cause a sore that takes forever to heal (I have one right now from drying my legs with a towel that wasn’t soft enough).

  6. I am very thankful and excited about this post because my ankles and legs would swell and get warm and they would create an ugly pocket behind my ankle of swelling which eventually lead to small broken veins or whatever they r…. rising to the surface so they r always there. My legs have always been ugly but my feet were’nt so bad…now they r ugly, You doc was outta line I would report him but not before givin him a piece of my mind. Im sorry but as women… we always dream of having pretty legs and being able to wear heels. Thats a touchy subject and he would’ve been ready for cosmetic surgery himself when i was done w him. Remember… those doctors work for you… even if you have insurance and you should’ve told him what was on your mind. Now that I got that out…. i had a GSV ablation on both legs cause my vein was ….leaky. Very expensive surgery. Doc said my legs should never swell cause he fixed the problem. Lil surface viens were nothing to b worried about. So now 2 years later and im doin nothin…. my feet start to swell. no reason. Got so bad last night that i have 2 feet that looked like blown up plastic gloves. My doc gave me water pill n says elevate. wear my compression socks… k already know that stuff. Socks wont go on. Should I be concerned? My grandmother died of a blood clot to the lung. I cant go get a doppler everytime they swell. Now i hear you guys talking about the L word things and i wonder if thats what goin on with me. Cause i read somethin in these posts about pain….. my legs always hurt and when they swell they hurt so bad. Sorry about my gramar. And sorry that you were treated so poorly.

  7. I also have lipederma, when I told the doctor that no matter what kind of diet I go on sense I went through menopause I CAN NOT lose weight. As I stand in front of him without clothes he told me honey it’s not your fault you have a condition call LIPEDERMA and there is nothing you can do to lose weight. I said what? I have never heard that word before what is it? Then he started drawing circles around swollen areas below my knees and in my thigh area. He suggested Lipo in the areas he had circled. That was two years ago and these spots are still growing and it is becoming harder for me to climb stairs. I’m 61 and want to be more active than I am able to be.


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