Experience report: Pregnancy with Lymphoedema

Pregnancy body part mediven 550 supports lymphoedema patients

It was a long journey before Isabell Regensdorff, now 34, was diagnosed with primary lymphoedema in both legs at the age of 30. The young woman recently became a mother. In this interview, she talks about pregnancy with this chronic condition, among other things.  

Once the diagnosis was made, medical compression garments were an integral part of her lymphoedema therapy. During her pregnancy, she also benefited from the new mediven 550 pregnancy compression garment.  

Ms. Regensdorff, it took 30 years for you to be diagnosed with primary lymphoedema. Can you give us an insight into your journey?  

"It was a long and rocky road. The first symptoms started in 2008 at the age of 18, when my left foot and ankle swelled up. It also felt hot, I got pain when walking and my skin was tight. I was only examined for thrombosis - with negative results. Vascular surgery and orthopaedics couldn't help me either. At that time, the diagnosis of lymphoedema was apparently not yet so widespread, even among specialists. As I hardly had any pain, I didn't investigate the cause any further. In the years that followed, however, I was also approached by outsiders about my swelling. This made me uncomfortable and so I sought advice from a doctor again, but again without a diagnosis. In 2021, I moved to Berlin when my right foot and ankle also swelled up - until then, I hadn't had any symptoms on that side. Looking back, the symptoms were the same as on the left, but I wasn't aware of the similarity at the time. As I was in pain and both legs were now affected, I visited a new GP who immediately referred me to a lymphologist. That was the turning point - he diagnosed me with 'primary lymphoedema in both legs'. I had never heard of the condition before then." 

You have primary, i.e. congenital, lymphoedema. Do the doctors have an explanation as to why symptoms only appeared when you were 18?

"The trigger could not be determined with certainty. However, I didn't want to simply accept that it was a congenital disease, but I wanted to understand what was wrong with my lymphatic system. That's why I had a lymphangiography at the University Hospital in Bonn - in my case a magnetic resonance imaging (MRI) scan with contrast medium. They found that my lymphatic system was missing 40 centimetres in each of my legs.” 

Treatment for lymphoedema with toe caps

To what extent has your relationship with medical compression changed?

"Although I didn't always wear my medical compression at first, I saw a positive change in my legs within the first two months. This motivated me to wear the compression every day from morning to night - the results spoke for themselves! Both my feet and ankles were very swollen before, but with the mediven 550 Leg medical compression stockings they regained their natural shape. That showed me the effect very clearly and I knew I was doing the right thing! Over time, my oedema also moved to my toes, which were now very swollen. After I changed medical supply stores and lymphologists, the specialist recommended that I wear toe caps. That was the best thing that could have happened to me!" 

Why were the toe caps from medi such a positive change in your flat knit care back then?

"The lymphologist responded to my individual needs, as my foot and forefoot are my main problems. With the toe cap, for example, I was able to wear open shoes again - with the compression stocking with closed toes, I didn't feel so comfortable in open shoes for visual reasons. Especially in summer, this gave me a new, positive feeling of being able to wear the same things as before the illness. This contributed to a positive change in my relationship - in addition to the quick and obvious effectiveness. I also changed the color to cashmere, which suits me and my skin type much better. It made me feel more comfortable - even in summer." 

Pregnancy: daily compression - even in summer

How did you feel during your pregnancy? Did you notice any effects on your lymphoedema?

"I was heavily pregnant in the summer, which was quite hard for me because I got extreme water retention due to the pregnancy. This also made my feet and lower legs swell up more and my skin felt very hot and tight. To counteract this, I regularly cooled myself down, for example with cold showers. I was also creative and took cooling pads to bed with me, for example. I continued to wear my medical compression garments every day. I also received two additional supplies due to my pregnancy and the mediven 550 maternity support from medi." 

Pregnancy belly section: support for the belly

You have worn the mediven 550 maternity garment in compression class 1 with a perforated band at the end. Did it provide you with noticeable additional support?

"Yes - for my stomach and my back. I also developed symphysis loosening (instability in the pelvis) during my pregnancy and felt that the body part also gave me support in the pelvis. I wore thigh highs and also a pair of cycling shorts with the pregnancy bodice incorporated, which I really liked! Above all, the fact that the belly was also supported by the pregnancy body part was very comfortable. However, as they were cycling shorts and not tights, I was much more flexible and could vary them easily. I liked the maternity wrap so much that I also wore it after the birth for postnatal recovery." 

What advice would you like to give to other pregnant women with lymphoedema?

"We have an illness, but it shouldn't be the main focus during pregnancy - even if isn't always easy. We should rather look forward to the fact that a little person is growing in our belly. Having a baby is a beautiful thing, and it's okay for your legs to swell sometimes. My biggest fear was that the pregnancy-related water retention would be permanent, but looking back I can say that it was gone two and a half weeks after the birth."  

In addition to medical compression, what other therapy components did you use before and during pregnancy?

"I have a Lymphomat (medical device to support the lymphatic system using an alternating pressure system), which I used almost daily during pregnancy and before that once or twice a week in combination with lymphatic drainage. Skin care also plays an important role: before the birth, I applied cream regularly - preferably with medi day and medi night. Exercise has always been firmly anchored in my daily schedule. I made sure to walk 10,000 to 15,000 steps a day and also took a sports course with a trampoline before my pregnancy. I ran and swam during my pregnancy. I also attach great importance to a healthy diet. I love baking, but I also pay attention to the ingredients and use bananas as a sweet alternative to refined sugar, for example." 

Your son was born in November 2024. How do you manage to maintain your therapy in everyday life with a baby?

"It is still challenging at times, but I continue to make sure that my therapy modules are firmly anchored in my everyday life, albeit sometimes in a different form. My baby likes to be carried, for example, which is why I can't use the Lymphomat at the moment. However, I am moving even more than before and often manage more than 20,000 steps a day! I also go to postnatal yoga. After about three months, I recently started manual lymphatic drainage again. Due to time constraints, I only manage to apply cream once in the morning, but skincare is still a fixed part of my daily routine. The same goes for healthy eating and wearing medical compression garments every day. Very important for me: I explain to my baby that I have an illness and have to wear compression. I hope that through my positive coaxing and explanations about my illness, wearing, putting on and taking off the medical compression will become firmly anchored in his everyday life over time and that he will understand it better later on." 

You also posted information on Instagram after your diagnosis. Was that a reason for you to become active there and share your experiences?

"When I was diagnosed in 2020, very few people with lymphoedema were active on the social platform. I was sure that there were many more people with the condition, I wanted to help others and also share my own story - that's why I started my account. I wanted to show that it's not a bad thing to have to wear medical compression at a young age. However, you can also see that lymphoedema - compared to lipoedema, for example - is more of a niche topic on Instagram."