Heavy, aching limbs, hatred of one’s own body and years of self-doubt: our author tells of her story of suffering with an illness that is painful but still hardly heard: lipedema.
“You are just very feminine” – that is a sentence I would never want to hear in my life again. I know that friends and family have always tried to calm me down with these words when I was desperate about my own body again and I could not produce satisfactory results despite exercise and a healthy diet. After all, not every body looks the same. That’s true too, but unfortunately I don’t have any (supposedly) desirable Kardashian curves, instead my curves come from a disease called lipedema.
Lipedema is a chronic fat distribution disorder and occurs almost exclusively in women. Often after hormonal changes such as puberty or pregnancy. In addition to the visible increase in fat on the arms and legs, there are regular noticeable complaints such as pain and increased pressure sensitivity of the skin. The causes of the disease are unclear and there are two therapy options: conservative therapy, with compression garments and manual lymph drainage, or surgical therapy using liposuction, i.e. liposuction. Both mean a fight with the health insurance companies. But let’s start at the beginning.
From slim child to puggy pupil
I was a very slim, even a thin child. I remember scenes where my parents ran after me with a spoon that I just ate. My grandparents were always concerned that I might be missing something – until puberty came. I started dancing ballet at the age of four, was actually quite talented and entered a performance class, and there was talk of a sports and ballet boarding school. Only I suddenly stood out from all the other girls: I had significantly thicker thighs than the rest of my ballet class and I also stood out next to my classmates. Suddenly everyone was teasing me that I was too fat and the leading roles in ballet had long since been given to other, thinner girls. I was desperate. I started my diet when I was 12 years old.
A teenage diet career
It has long been scientifically proven that diets are of no use. And so I starved myself in my teenage years, only to gain weight again afterwards. When I was 14, I took pills that swelled up in my stomach to curb my appetite. Low Carb, No Carb, Weight Watchers, Montignac, Glyx, Atkins, food combining – by the time I was of legal age, I had tried all of these diet forms. In addition to my legs, I also discovered that my arms were wider than average. Tank tops have always been taboo. And the complexion of my skin also changed. I was used to the cellulite on my legs, but dents on my arms? I disgusted myself. Because I thought I was just too stupid and lazy to lose weight.
Pants that no longer fit at the end of the day
Over the years I gave up dancing. I studied and lived more or less with going through nasty weight fluctuations from time to time. Shortly before my period, I like to put four kilos more on the scales than immediately afterwards. And otherwise there were phases in which I was sometimes leaner and sometimes less. When I started my first job, I noticed that at the end of a long day at work my pants were getting too tight and hardly touching any more. I felt like I was storing water and long walks felt like a marathon. After that, I often had sore legs and was limp. As soon as I had to walk a little faster or even run, I had a stitch in my calves and sometimes my legs just closed so that I had to stop or sit down for a moment. I suspected that I was storing water in my legs and went to my family doctor to explain the problem to her: I should wear less tight pants and pay attention to my digestion, then the lymph would also drain better and the water would not be stored, like that her advice. When I did my search, Google spat out the disease lipedema. It can’t be, I thought, and closed the browser.
I wanted to cut off my legs
At some point there came a time when I looked at myself in the mirror and just wanted to cut off my legs. More and more women were talking about lipedema in the media and now I couldn’t close my eyes to it either. Blue spots for some inexplicable reason, high sensitivity to touch, disproportionate limbs but a slim face and a narrow waist, heavy legs, doing sports is difficult. In my Instagram bubble I came across a list of doctors and found a promising doctor in my hometown of Mainz, with whom you could also make appointments online. The waiting time was around four months, but you were used to that from other doctors.
When I wanted to audition there, I saw patients with so-called elephantitis who had to walk on crutches. I felt bad and thought: “He’ll laugh at me and send me away”. It takes a lot of effort to go to a doctor and say, “I think I am not fat, just sick”. Because society teaches you again and again that fat people are lazy and undisciplined, they just look for excuses. And there are also doctors who do not recognize lipedema as a disease and say to their patients: “They are just fat”.
But I was lucky. Dr. Bensch examined me without judgment. When I screamed out loud during a pinch test, he said quite soberly that this reaction spoke for the disease. An ultrasound of the legs and arms then proved that I had lipedema. At first I didn’t even know what to do with this diagnosis and stumbled out of the practice with two prescriptions in hand. One for the compression supply and for the manual lymph drainage against water retention. 60 minutes twice a week. My whole life.
The pain became unbearable
A phenomenon that many Lip patients describe is that the pain gets worse after the diagnosis – and that is exactly the case with me. I suddenly noticed if my legs hurt. When I gave room to the pain, it became unbearable and drove me insane. I had to wear compression underwear every day. You can get these made-to-measure in the medical supply store. Ironically, I was now wearing tight, tight tights. The same thing was available again as a bolero for the arms.
Every visit to the medical supply store is frustrating. First, a comparison is always made to determine whether the volume has increased or decreased. Second, there is always trouble with the recipes. Because a pair of tights costs between 600 and 800 euros and the health insurance companies first want to check whether you are simply too fat. To do this, they send everything to the medical service of the health insurance funds, or MDK for short, when they receive the first treatment. He uses pictures and reports from the doctor to check whether you really have lipedema.
Who will check that? An ophthalmologist, sometimes a general practitioner. Everything but no specialists. And they make life difficult for many patients. In my case, it took me six weeks to get an acceptance. I am entitled to two supplies a year. When you consider that these have to be worn and washed every day, that’s next to nothing. Many women stand up every night and wash their tights off, toss them in the spin machine, and hope they’ll be dry the next day. For me personally, this takes away the quality of life and the pain is only minimally improved by wearing it.
The way to the operation
It was clear to me that I wanted to have an operation. Many women are afraid of such an operation. Lipedema surgery differs from classic liposuction. There is a risk that the lymphatic system can be damaged and that would only worsen the symptoms. So you have to go to a specialist who can perform circular suction around the lymphatic system. In the best case scenario, all diseased fat has to go. But at first glance you can’t really tell which fat on the body is sick or healthy. The result is never really as even as with cosmetic surgery. Most of the patients, like me, hardly care. I just wanted to get rid of my pain. The fact that the legs look a bit slimmer is a positive side effect.
So I went to my trusted doctor, who also operates, and asked for advice: 5500 euros per operation, two for the legs and one for the arms.
I can wait a long time for my health insurance to take over the operation: an operation is only accepted if the worst stage, i.e. stage III, has been reached. To do this, however, you have to have a BMI of less than 35, so the woman may only be slightly overweight. Total nonsense. A woman with advanced fat distribution disorder is automatically overweight. After years of fighting and petitions, the Federal Joint Committee (GBA) started the “Lipleg Study” this year to find out whether liposuction really helps with lipedema. Results are expected from 2024 and after that one can perhaps hope that the health insurance company will take over the costly operation. There have already been delays due to the corona pandemic, so women affected do not need to hope for timely study results. Until then, the health insurance will continue to pay 635 euros a year for my pantyhose and lymph drainage twice a week for 50 euros per treatment. However, I paid the 11,000 euros for the operations on the legs myself.
Not a walk
The health insurance companies argue that liposuction is a cosmetic operation and I can say with full conviction: This operation is no walk in the park. First the outside of my legs and then the inside of my legs were operated on in twilight sleep. First I was injected with what is known as a tumescent solution. It dissolves the fat cells and at the same time acts as a local anesthetic. An hour later I woke up in a cabin with plump legs that were like melons and freezing cold. With the stompers almost bursting, I rattled my teeth for another hour because I was cold – despite the blanket and heating ventilation. Then I was allowed to waddle back like a duck to the operating room, where everything was then suctioned off. In between I was woken up and was supposed to turn around myself.
The last time I woke up, I noticed the needle holes being sewn shut while a physiotherapist was performing lymphatic drainage on me and then bandaging my legs. During the second operation, tears were still running on the table – the pain was almost unbearable and I knew how long it would take to heal. All the frustration about the pain, my appearance, and the cost just came up and I started crying out of control.
I am glad that I went this way, because my pain has improved significantly, even if I am still dependent on compression and lymphatic drainage. Nevertheless: The diagnosis of lipedema is close to hell, not only because of the pain, but also because meaningful help is denied or made very difficult – even though it would actually pay off in the long term.