“Patients need the physician to accompany them on their journey”



In addition to manual lymphatic drainage, exercise, skin care and self-management, wearing compression garments is one of the five pillars of complex decongestive therapy – the most effective treatment of lipedema and lymphedema. A specialist and her patient tell us what those affected benefit from most over the course of treatment.

When it comes to treating lipedema and lymphedema, both women agree: “Treatment can only be successful when it’s accepted and consistently incorporated into everyday life,” report Dr. Julia Middelhoff, Specialist in Abdominal Surgery, Phlebologist and Lymphologist, and her patient Alexandra Konietzka. She works at a medical supply retailer and specializes in the treatment of edema patients. Based on her own experience and on her everyday work, Alexandra Konietzka has come to the following conclusion: “Patients need the physician to accompany them on their journey. Otherwise, the whole concept doesn’t work.” And what’s more: both women have discovered VenoTrain curaflow compression products for themselves. As a physician, as a specialist retailer and as a patient. Luckily they found each other in the Rhine-Main region, Germany. It is not only Alexandra Konietzka and Dr. Julia Middelhoff that benefit from this but also almost all their patients, who seek help and advice at the Emma Hospital in Offenbach or at Sanitätshaus Zentner Scherer medical supply retailer in Frankfurt’s city center.

It usually takes many years to obtain the correct diagnosis

Alexandra Konietzka noticed the first signs of lipedema during puberty, but nobody took her seriously and most physicians merely suggested she should lose weight. “Even though I was a competitive swimmer with great discipline,” reports the trained practice nurse, who spent a long time working at an orthopedic practice. It took keeping a meticulous food journal and visiting a specialist hospital to have the diagnosis of lipedema with a tendency toward lymphedema confirmed several years later in 2007. “A fat distribution disorder usually also affects the lymph vessels. The two diagnoses often occur in combination,” Alexandra has now learned. Treatment followed according to the guidelines, including decongestion, lymphatic drainage and flat knit products. Care and exercise are second nature to her anyway. Finally knowing her diagnosis, the Hesse-born patient deepened her understanding of the condition with enthusiasm and, in 2019, she started work at the medical retailer where she had been given her compression products. Even though she seemed to be on the right path, the pain in her legs remained and even got worse over the years, despite consistent treatment.

“The effects on quality of life are underestimated”

Dr. Julia Middelhoff joined the field of lymphology indirectly, too. As a specialist in abdominal surgery, she kept meeting patients with post-operative lymphedema in outpatient care. She also went to conventions to find out more about the topic of lipedema. “There are many patients who are in pain even to the slightest touch or when I place the ultrasound probe on them,” she reports. In order to help these patients more effectively, she specialized in the treatment of phlebological and lymphological conditions and underwent further training in lymphology with Curriculum Lymphologic GmbH. In Offenbach, one of the Emma Hospital locations, she now offers weekly office hours specifically for patients with lipedema and lymphedema. “Patients who come to see me suffer significantly and need to talk about their situation,” the expert explains. “They usually have a medical history going back years or even decades. After all, they have a chronic condition but the effects on their quality of life are often underestimated.” When treating primary and secondary lymphedema, Dr. Middelhoff strictly follows the five pillars of complex decongestive therapy: the first phase includes manual lymphatic drainage and a lymphological compression bandage for decongestion. During the second phase, which lasts for the patient’s entire life, this is complemented with regularly adjusted flat knit compression products, kinesiotherapy to promote decongestion, instructions for skin care and information about self-management. Treatment for lipedema is similar, whereas decongestion may be required based on the stage/condition. But as important as medical care may be – Dr. Middelhoff underlines the importance of self-management. Together with her patients, she keeps working on ways how and which physical activities can be incorporated into everyday life. “They have to be fun, otherwise they won’t work,” realizes the specialist, who keeps asking how her patients are getting on with their activities. The same applies to compression products.

“Patients who come to see me suffer significantly and need to talk about their situation.”

Dr. Julia Middelhoff

The right compression product changes everything

When it comes to compression products, she relies on the close cooperation with medical supply retailers and physical therapists – including Alexandra Konietzka. Alexandra came to see her because her previous physician retired and she was suffering from severe symptoms. “It was worse in my legs. The tissue was so hard and I was in agony,” reports Alexandra Konietzka. Dr. Middelhoff prescribed lymphatic drainage and compression. Over the course of treatment, they kept having in-depth discussions about options for exercise and compression products.

“In 2021, I tested the VenoTrain curaflow and, from then on, everything improved quickly. It was amazing,” exclaims the former competitive athlete. She wears arm sleeves and gloves as required. But she never goes without her VenoTrain curaflow pantyhose, which she thinks are “just awesome.” This was the first compression product that helped soften her leg tissue visibly. Plus, the pain reduced significantly. That was because the fine double-stretch knit of all VenoTrain curaflow products exerts a consistently high level of working pressure during movement. This uniform compression of the tissue helps to improve lymph transport. The longitudinal structure on the inside of the knit forms fine drainage channels, thus boosting the therapeutic effect. Alexandra Konietzka wraps a tape measure around her thigh which digs in deeply to prove how loose her tissue is now. She is also excited that she has regained her mobility: sitting cross-legged or on her heels? No problem! “Even when I squat down in front of a customer for 20 minutes to take circumference measurements. The VenoTrain curaflow accompanies me in all my movements without slipping. I even wear it under my wet-suit when I go diving,” the water enthusiast exclaims.

This makes her the best example of how useful the right compression product can be if it is worn consistently. She encourages new patients in particular because some are distraught when they arrive at her store. Alexandra Konietzka not only regards it as her job to share her knowledge with her patients but she knows from her own experience: “The psychological component of the condition must not be underestimated.” She considers listening to her patients and being there for them as part of her job. “I always tell them that they have to accept this chronic condition, that’s essential to cope with it,” she confirms resolutely. The same applies to compression: it’s an ongoing treatment. “Compression products are like a second skin.” She explains that if you understand that concept, you will regain much of your quality of life.

“Accompanying psychological care is a huge topic”

It is no surprise that Alexandra Konietzka is one of Dr. Middelhoff’s ideal patients. Both follow the same approach – each in her own area of expertise. “Compression is an important pillar of the guidelines,” the lymphologist explains. “If compression products are measured perfectly and worn consistently – after decongestion and lymphatic drainage in cases of lymphedema and after the initial tissue loosening in cases of lipedema – these efforts will result in success.” She knows that starting out is hard. That is why she provides encouragement and information to make sure patients stick with it. “One of my tasks is to put patients at ease. I simply listen and try to find out something about their circumstances so I can tailor their treatment accordingly. Accompanying psychological care is a huge topic,” says Dr. Middelhoff. She also refers her patients to certified self-help groups because: “People with all sorts of different experiences meet there. They can give each other great tips that can be really helpful.” Dietary counseling is another topic because lipedema and lymphedema often occur in combination with obesity, which must also be treated. In these cases, it may make sense to follow a weight loss program or keep a food journal to note which food increases the pain.

Right after Dr. Middelhoff’s patients receive their diagnosis, she monitors them closely and uses the appointments to find out which treatment steps or measures are beneficial and help them and whether something needs to be changed. What is more: “Studies have shown that patients only remember about 20 percent of what they were told during the first appointment,” she explains. That is why she gives them leaflets they can read at home. “After all, only educated patients have a chance to achieve progress during their treatment.” The practice assistants in the different locations have all been trained by her and can provide information before and after the appointment, even over the phone. With this condition, any kind of informational exchange is really important, and each person has to find out what works for them. “My patients always have to wear their compression products during their appointments,” the physician reports, so she can verify that they are really being worn during their everyday life. She checks how easy it is for her patients to put on and take off their garments and whether the stockings look used.

Relaxation techniques instead of pain medication

If the pain does not disappear, even after prolonged periods of wearing the compression garments and despite treatment compliance, there might be other problems, too. This may include stress. “Stress hardens the muscles. You can often see that right away by looking at the tissue,” Dr. Middelhoff points out. She recommends learning relaxation techniques, such as autogenic training or mindfulness exercises, to reduce stress.

She advises against the excessive use of pain medication or diuretics because of the side effects, which may increase the edema. She would like to see more education happening in family practices, not just in this area but overall, and she encourages general practitioners to refer patients to specialists if edema is suspected. “Public awareness of the conditions of lipedema and lymphedema is still lacking, and the stigmatization has to end.”

Confident wearing of the VenoTrain curaflow, with its versatile fashionable colors, is the first step – for both Alexandra Konietzka, who can only do her physically demanding job at the medical supply retailer whilst wearing compression products, and also for Dr. Middelhoff: with a smile, she shows the stocking on her lower leg. Even though she is not affected by the condition, she often wears compression stockings during office hours because she wants to motivate her patients: “It is key to accept that treatment cannot make your legs slim, but it can make a great impact on your pain. And with less pain, activity increases and therefore quality of life.”

Images: Bauerfeind, Rainer Kraus