I´m writing my lipoedemastory in English because most of my Instagram followers are outside Finland and this has been asked. If you have any questions, send me through Instagram, or email firstname.lastname@example.org, please. I will be also publishing my story about the surgeries later on. It will be after holidays.
Lipoedema is not a disease in Finland because they think it´s just abnormal fat without any treatment. It´s also mistaken as obesity. In Finland doctors are not aware of lipoedema because it´s not part of their education. The patient often struggles with weight loss for years until she stops to think if the problem would be somewhere else. Then her struggle to get diagnosis and treatment begins. There isn´t any lipoedema clinic in Finland. Liposuction stops the progression of lipoedema and the liposuction should be done by a plastic surgeon who is specialized in lipoedema. Surgery is expensive and there are experienced professionals in Germany. I went to Med Plast clinic and I´m very satisfied with the surgeries and the results. I paid all surgeries myself (not covered by insurance) and each was 6000 euro. I had 2 surgeries.
Here is my story how it all started and where I´m now.
I live in Finland and I´m currently 34 years old.
At the age of 12, I started to have pain in my legs and I had to eat a lot of painkillers and often. My legs swelled a lot over the day and I felt uncomfortable.
At the age of 16, I was still only 44 kilo (height 163cm) and there was much abnormal fat tissue in my legs even though I was underweight. I wondered why my legs were looking the way they did even I was so skinny. I wanted to lose weight and school nurses were worried because I was already so skinny. But I only saw the fat that l wanted to get rid off.
Proggressing to stage 2
At the age 18, I had major surgery because I got into an accident. I broke my right knee and my spinal cord. I couldn’t walk properly, so I gained 30 kilo in six months. After that it was harder to walk and I felt like I was dragging my legs. I tried to lose weight for many years, but it felt really difficult. It was more difficult for me to lose weight than average person had. Finally in 2008 I had lost 30 kilo and it took long time, more than year. Back then, I didn´t have anything else in my life than diet and workout. I starved myself with 600-800 calories because nothing else seemed to help. Mainly I ate vegetables, berries and eggs. I cycled 14 km a day, went swimming once a week and exercised 5 times a week at the gym.
After weight loss, there were still much fat in my legs and the thighs were filled with cellulite. I was advised to dry brush them and wear compression garments rest of my life and there wouldn`t be any other treatment. I brushed my legs like crazy and used compressions for a long time without getting any changes in my legs. No one mentioned anything about lipoedema. They only said that I’m going to stay this way rest of my life and I should accept it. I didn´t accept it.
It was year 2015 and the situation got worse and I got varicose veins to my right calf. That time I had severe pain in my legs, and I was using very strong pain medications such as Tramal and Panacod. It felt like my thighs were on fire and someone was drilling my calves. It took two hours in winter for my legs to recover from the cold weather. I had my winter jacket on my legs after I came to work because my legs were freezing cold and my doctor said it was nerve pain. But I knew it was something else because I had symptoms already at the age of 12. I wasn’t taken seriously and nobody didn´t listen. I didn´t believe them.
I went to a private plastic surgeon and finally he told me that my legs were not looking normal. He suspected that I had lymphedema. I finally went to lymphoscintigraphy which showed that my lymphatic circulation is normal and I haven´t got lymphedema. I googled lymphoedema, and I eventually found pictures of Myra Snöflinga and I saw similar kind of legs. Myra has lipoedema and I was convinced I have it too. I went to a community plastic surgeon and she confirmed I have lipoedema. All the symptoms and years of suffering. Finally I got explanation and disease had a name. I wasn’t crazy and imagining everything in my head.
I thought that now finally I will get treatment and a new life. Plastic surgeon at the community hospital told me she would perform the liposuction because it´s treatment and she thinks I would benefit from it. She said the surgery has to be done proper way that it doesn´t need to be fixed later on. Finnish community hospital´s policy was to do surgery one leg at a time. They said they have much experience and patients are well cared afterwards. I was convinced and agreed to the surgery. Some lipoedema liposuctions are done in Finland, but only if the patient has a BMI 30 or less and has mobility problems and pain.
They removed 3.8 litres from my other leg. However after 2 months later, I noticed that the result was really uneven and there was a lot of fat left on my thigh, and I was very disappointed. They told I should have this amount of fat in my thigh and it´s not safe to remove more. They didn´t want to fix it and they were satisfied with the result. I knew myself that I wouldn’t benefit from it because there was so much fat left. I still had a lot of pain and I didn´t like the way they looked.
I didn´t want to operate my other leg anymore at the same hospital. I decided to go abroad for liposuction. I knew that there is an international lipoedema Facebook group and there patients share their experiences around the world. I contacted Med Plast clinic and surgeon Frank Labschies called me on the next day. I talked to him over the phone and I was convinced, so we booked surgeries for February and April 2019.
Surgery at Med Plast clinic in Berlin
26/2/2019 Med Plast clinic removed 3.8 liters from my ankles, calves and knees. It was weird to see my calf muscle after 20 years. It was weird to see my own ankles when I don’t even remember what they looked like. I saw them last time at the age of 11. It was also weird to feel my knees, because I used to feel only fat when I have put my knees together. I always wondered why doing squats has been so difficult before. Of course it´s difficult when the legs were full of fat and painful when squeezed together. The mobility started to improve and the pain to ease after the first surgery.
April 2019 they removed 5.6 liters from my thighs and hips. Total of 13.2 liters were removed from my legs and hips (includes the surgery in Finland). I still have one surgery to be done to the upper body. I have little fat on my arms, but I want to have the surgery anyway.
The current situation
3 weeks after the surgery I was sharing my story at finnish lipoedema seminar. There was about 70 people, and most of them were lymphoedema therapists. The experience was great and I´m glad I went there to share my story.
Healthy diet and workout are also part of my life even after liposuction. My legs are still swelling without the compression, but I have accepted it. I can also keep the compression for the rest of my life, because it´s not a issue for me.
I personally believe it’s about balance, feeling well and listening my body. At the moment I’m on RAD-diet, but I don´t give diet control my life.
The lipoedema gene doesn´t disappear, but I will not let lipoedema take over my life.
The surgeries were worth all the pain and effort. I´m glad that I found the Plast-Med clinic and happy that they wanted to help me. Unfortunately many ladies are still struggling with lipoedema and I want to help them. I have my own finnish lipoedema group on Facebook and I´m writing this blog to help other women.
I can’t get years back in my life, but I can try to save years in someone else’s life.
My best advice ever for every lipoedemafiighter: Do not give up, ever. There´s always hope.