I noticed the first increases in fat during puberty.

I noticed my first fat gain during puberty. My legs got thicker and thicker but my trunk remained slim. I also had so many bruises on my legs that I didn't notice that my pediatrician sent me to a blood clotting specialist. She actually suspected lipedema. I then googled it and thought to myself “no, I don't want that. I just don't have it”. Because I've seen pictures of people with stage 3 lipedema and that it keeps getting worse. It got worse when I started taking a hormone preparation for medical reasons when I was almost 19. It got really bad after my Covid infection in 2021.

In the summer, I had extreme pain and a lot of water in my legs and feet. As I was doing physiotherapy at the time anyway, my physiotherapist spoke to me about it and said that it was probably lipedema. I now wear compression tights and go to regular lymphatic drainage sessions, but I still have pain when I run more at work, for example, or go for a walk or after a hot bath. I also have pain in my arms when I blow-dry my hair or carry shopping, for example. Unfortunately, the pain often doesn't get better overnight. Or if I sleep during the day and have had a night shift.

I went to my family doctor with the physiotherapist's suspicion and she gave me a referral to a specialist. I then went to Tabea Hospital in Hamburg and they made the diagnosis. The doctor was a vein specialist. However, they only looked at the legs and not the arms, which also cause complaints. I think about 8-10 weeks passed between the appointments.
I was diagnosed with stage 1. However, I recently had a consultation about liposuction and the doctor said that it is more likely to be stage 2 and that the arms are also affected. The whole arms and legs are also affected. However, there is no deformity of the legs and feet. A slight obesity was also diagnosed based on the BMI.

What's more, now in the winter, my legs and arms get super cold and take hours to warm up. Even when I put a hot water bottle under my two blankets or take a hot bath, I tell my friends and family that it's just unhealthy fat that's growing uncontrollably and won't go away even if you exercise a lot or eat a healthy diet.
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My friends have been very understanding and supportive. My grandmothers haven't reacted so well, and neither has my aunt. She saw me for the first time in years shortly after I was diagnosed and just denied that I had it. Without asking about symptoms or seeing me in my underwear. I was pretty shocked. Especially since she's a doctor.
My highlight is that liposuction is now actually scheduled. I know that's very privileged, but I'm still incredibly happy!

I try to wear my compression tights regularly. Especially when I'm at work because I walk and stand a lot. I have the feeling that they help a little, but often I can't stand the tightness very well. The lymphatic drainage helps me more! I go there once a week for an hour. So far, everything has been paid for by TK. I've also had nutritional advice, which was also covered by the health insurance.

I like my face, my hair, my hands and my feet the most on my body. At least my legs and arms, but I think that's more due to the pain than the appearance. I think I could make friends with the looks, but not with the pain.
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I feel most comfortable in a long-sleeved dress. I don't like wearing a swimsuit or bikini because it makes me feel fat and ugly. I already have problems showing myself like this in front of my friends and family, so I'm even more uncomfortable in front of strangers.
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I'm already planning to have children, but now I'm afraid that the pregnancies will make it worse. Even though I am now considering liposuction.
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I have always struggled with dry skin. I always use cream or oil after showering or bathing. That helps me very well. It's important afterwards so that the cream or oil can be better absorbed.

I advise all those affected not to be put off and to keep searching until they are taken seriously. Unfortunately, it is still the case that women and their illnesses are not taken seriously. If lipedema were a disease that only or almost only affected men, there would have been more research into it a long time ago and liposuction would be paid for by health insurance companies.
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Radical acceptance and the prospect of the upcoming operation helped me a lot. But I also know that this is not possible for everyone affected.
I would avoid running long distances, such as long walks or jogging. Instead, I would recommend any kind of sport in the water.

I would recommend psychotherapy for psychological problems, because it's nothing to be ashamed of or uncomfortable about. It definitely helps in the long term.
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If friends or relatives dismiss lipedema and the symptoms, I would give them information material to read and describe the symptoms and complaints in detail. I would also make it clear what restrictions they all have.

Because you're great just the way you are, don't forget that!