Health: Common and often unrecognized: Severe suffering caused by lipedema

It is a serious, incurable disease that almost exclusively affects women and often means a massive increase in volume, especially in the legs and arms, as well as constant pain.

Health: Common and often unrecognized: Severe suffering caused by lipedema

It is a serious, incurable disease that almost exclusively affects women and often means a massive increase in volume, especially in the legs and arms, as well as constant pain. Lipedema is widespread but often goes unrecognized or is confused with obesity. The causes of the chronic disease, which results in a drastic proliferation and enlargement of fat cells, are still largely unclear.

For Tanja Degner it began in 2000, after the birth of her son. “I had swollen ankles, heavy, painful legs and gained a lot of weight,” says the 52-year-old. "My doctor said I should eat less." She tried a diet of less than 1,000 calories a day - and yet the size of her legs and arms and her weight grew significantly.

"The pain increased, I had hematomas, I couldn't stand any touch." A TV report puts her on the trail and she goes to see the doctor mentioned. “After a veritable medical marathon and 14 years of extreme weight gain and severe symptoms, I finally got the right diagnosis,” says Tanja Degner, who lives in the Osnabrück district close to the North Rhine-Westphalia border. "The path to diagnosis is full of stumbling blocks for many women."

The director of the Plastic Surgery Clinic at the University Hospital of Münster, Tobias Hirsch, speaks of a “diagnosis gap” of around 20 years until lipedema is correctly diagnosed. "We don't know enough about this disease and what exactly happens in the body." There are no clear figures on those affected; the number of unreported cases is high.

Undisputed: "A relevant part of the female population is affected." There are few specialized doctors and there are extremely long waiting times. "We assume a genetic predisposition and hormonal triggers, and that lipedema is highly diet-resistant." Nevertheless, nutrition plays a role. Sometimes obesity comes on top of that.

A progressive disease in three stages

Lipedema is divided into stages I to III depending on the amount of fatty tissue. In the third stage, the circumference can be so enormous that the tissue hangs over the typically narrow knee, wrist and ankle joints. For some, the lipedema remains in stage I or II, explains Hirsch, who, as an expert in the Bundestag's health committee, called for better care. He considers the classification according to fat mass to be very problematic because pain is the central symptom. "It may be that a patient with still slender legs in stage I has much more pain than a woman in stage III with a massive increase in volume."

Claudia Effertz from the Lipedema Society (LipöG) estimates that up to four million women nationwide are affected by lipedema, but many do not know this. A broad information campaign is needed. Lipedema most often occurs during puberty, pregnancy or menopause. Orthopedic comorbidities such as misalignment of the leg axes or joint wear can occur. The mental stress is also heavy. The course, extent and dynamics varied.

Compression garments and lymphatic drainage help to relieve the symptoms. Tanja Degner's day also begins with squeezing herself into medical compression stockings. “I have pain in my arms and legs 24 hours a day and am affected by secondary lymphedema,” she describes - so she is also at risk of degeneration of the lymphatic vessels. The weight puts strain on the spine and joints, and two knee operations were necessary. At her worst, she was 1.67 meters tall and weighed almost 180 kilograms. "I was close to being in a wheelchair."

After her diagnosis, she has now lost 45 kilos with the help of a nutritionist and exercise therapy. Her health insurance company refused to cover the cost of liposuction. The 52-year-old says she collapsed mentally after the rejection.

Don't leave those affected alone when it comes to costs

Many experts demand that health insurance companies should cover more costs. This applies especially to liposuctions. The latest lipedema guidelines from January 2024 - written by several medical societies, especially vein specialists - recommend that, in severe cases, the massively increased fatty tissue under the skin on the arms and legs should be surgically removed. It is also emphasized that the results of liposuction are better in the early stages.

Claudia Effertz, who only received the correct diagnosis after 15 years and had gained 70 kilos by then, fought unsuccessfully against lipedema for four years with compression clothing, lymphatic drainage and a lot of exercise. “I had to walk with a cane and was only able to work at 40 percent,” says Effertz. After several initial cancellations from the health insurance company, the costs for operations on the legs and arms were covered. Six procedures were carried out and 55 liters of fat were suctioned out. "The operations were very stressful, but the enormous relief outweighs them.

The fact that these procedures are compared to cosmetic surgery is wrong and macabre." She is now fully operational again. "In general, leaving women hanging is bad - given the lack of staff and the often very good qualifications, it is intolerable."

Liposuction is associated with very few risks and complications, says doctor Hirsch. "So far we have no alternative for severe cases. The women benefit significantly. The operation does not make you healthy, but it has many advantages." Pain and body size would be significantly reduced, as would orthopedic damage and psychological stress. "The earlier the operation is carried out, the better."

Hirsch criticizes: "There is currently a huge problem with health insurance reimbursement - a struggle for patients, doctors and hospitals." He hopes that a large-scale study that is still ongoing will prove the high benefit of surgery in severe cases and that the procedures will soon become a flat-rate health insurance benefit, regardless of the stage.

What do the health insurance companies cover?

Liposuction is currently only paid for in stage III, after an individual case review and for a limited period until the end of 2024. The National Association of Statutory Health Insurance Funds states that the data situation is unclear and that around 300,000 affected people may now be receiving treatment. From 2020 to 2023, the costs were covered for a total of 14,180 inpatient or outpatient procedures (only counted here until mid-2023). The requirements for reimbursement are determined by a quality assurance guideline. According to LiPöG, three quarters of women pay for their procedures themselves and often go into debt. The professional association of gynecologists emphasizes that liposuction for lipedema is not a cosmetic procedure, but rather medically necessary.

Miriam from the Odenwald fought for a long time to have liposuction. After objecting and requesting a personal assessment, she is now being paid for two procedures. Despite gaining 15 kilos due to lipedema, she is still almost normal weight, but has been in pain for years. The 37-year-old reports that the increase in fat tissue cannot be reversed with the gym and diets. At home she has a lymphatic apparatus, a huge pair of seat pants with a compressor. "Against the pain." She can no longer hold her little daughter on her lap, often has to cancel everything, and has no prospect of improvement without surgery. "This illness is so time-consuming and stressful, everyday life is so difficult to cope with. For me it's not about appearance, I hope for a pain-free, normal life."

Tanja Degner has not lost her sense of humor and hope and is tackling it head-on together with a group of those affected: "We want to make it clear that we are sick and achieve destigmatization. We need needs-based care, more competent doctors, more understanding. The Illness is stupid, but it shouldn't dictate our lives."