Lipedema is not a disease in Finland. They think it´s abnormal fat without any treatment and is also mistaken as obesity disease. In Finland doctors are not aware of lipedema because it´s not part of their education and we don´t have any lipedema clinic. Often the patient has been dieting for years and struggles with the symptoms until she stops to think if the problem is somewhere else. Then her struggle to get diagnosis and treatment begins. Liposuction stops the progression of lipedema and it should be done by plastic surgeon who is specialized in lipedema. Surgery is expensive and there are experienced professionals for example 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 and I still have one left.
How it all started?
Here is my story how my lipedema journey started and where I´m now.
I live in Finland and I´m currently 35 years old. At the age of 12, I started to have pain in my legs and I had to eat painkillers. My legs felt uncomfortable and looked swollen.
At the age of 16, my weight was only 44 kilo (height 163cm).
I wondered why my legs were looking the way they did even though I was underweight and I could see my ribs. I wanted to lose weight and school nurses were worried because they thought I was already too skinny. I only saw the fat that l wanted to get rid off. I was comparing myself to others and felt different.
Progressing to stage 2
At the age 18, (year 2004) I got into an accident, my leg and spinal cord got broken. I couldn’t walk properly, so I gained about 30 kilo in 6 months. After that it was really hard to walk and I felt like I was dragging my legs with me. I tried to lose weight for many years, but it was slow and difficult. It was more difficult for me to lose weight than average person did and I was wondering why.
In 2008 I started to workout a lot and I didn´t have any other life than diet and workout. I starved myself eating only 600-800 calories because nothing else seemed to help. I went to nutrionist and she said I should eat 4 breads, porridge, pasta/potatoes, vegetables, glass of low fat milk, low fat yoghurt and little bit protein daily. I gained 4 kilo in 2 weeks and felt so swollen so I stopped. I noticed carbs and dairy were my “enemy” so I created my own meal plan and tried to listen my body. Mainly I ate chicken, fish, berries and eggs. I cycled 14 km a day, went swimming once a week and exercised 5 times a week at the gym. It took a lot work and discipline with my diet but I finally lost 30 kilo.
There was still much fat in my legs and the thighs were full of “cellulite” even I lost 30 kilo. I was advised to dry brush them and wear compression garments rest of my life. They said there isn´t any other treatment.
I wanted to go do liposuction and they said it won´t help and I should just continue dieting. That time I was already dieting about 10 years. I drybrushed my legs like crazy and used compression for years without getting long-term improvement. No one mentioned anything about lipedema. Doctor´s told me that I’m going to stay this way rest of my life and I should just accept it. I didn´t ever accept it.
It was year 2015 and my condition got worse. They didn´t offer me anymore compression for free and I got varicose veins to my right calf. That time I had severe pain in my legs, and I was using strong painkillers such as Tramadol and Panacod. I 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. 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.
2017 I went to a private plastic surgeon and finally he told me that my legs were not looking normal. He suspected that I had lymphoedema. I finally went to lymphoscintigraphy which showed that my lymphatic circulation is normal and I didn´t have lymphoedema. I googled lymphoedema, and I eventually found pictures of Myra Snöflinga and saw similar legs. Myra has lipedema and I was convinced I have it too. I went to communal plastic surgeon and she confirmed I have lipedema. All the symptoms and years of suffering. Finally I got explanation and disease had 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 would do the liposuction because it´s treatment and she thought 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.
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 especially on my thigh and I was very disappointed. They told I should have this amount of fat on 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 still had a lot of pain and I didn´t like how my legs looked so I decided get treatment from somewhere else. I didn´t want to operate my other leg anymore at the same hospital.
I knew that there is an international lipedema 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 as I didn´t even remember what they looked like. I think
I saw them last time at the age of 11. It was also weird to feel my knees, because before I used to feel only fat when I put my knees together.
I always wondered why it has been so difficult to do squats nut now I know. Mobility started to improve and pain to ease after the first surgery.
April 2019 they removed 5.6 liters from my thighs and hips. So 13.2 liters were removed from my legs and hips (total Germany and Finland). I still have one surgery to be done and it´s planned to June 2021. I no longer need any painkillers and I have been able to exercise better, go jogging and do bit of running. I feel that I have a new life, all the shame and guilt is gone. I still have long journey ahead and I want to improve my mobility and workout much more. I also want to raise awareness in Finland and give people hope. I hope my story inspires others.
The current situation
Healthy diet and workout are also part of my life even after liposuction. Now I can enjoy some days without compression and especially in the summer at the beach which is nice.
I believe life is about balance, feeling well and listening to body. At the moment I’m doing low carb/carnivore diet, but I don´t let diet control my life. I don´t like to talk about diets, because I feel this is more like a lifestyle. My experience is that stress causes lipedema fat growth much more than some diets. The lipedema doesn´t disappear, but I will not let lipedema take over my life. I still go out with my friends and enjoy my birthdays.
The surgeries were worth all the pain and effort. I´m glad that I found the Med Plast clinic and happy that they wanted to help me. Unfortunately many ladies are still struggling with lipedema and I want to raise awareness. I have my own finnish lipedema group on Facebook and I published this site to spread information.
I can’t get years back in my life, but I can try to save years in someone else’s life. Early diagnosis and treatment can save someone else´s future. I´m so happy to be able to help others. I still have many new things ahead and this site is only a start. I want to thank everyone who has been following my journey for so long. Without your support I wouldn´t be writing this.
My best advice for every lipedemafighter: Do not give up, ever. There´s always hope.