The gynecological disease no one talks about

I started laying on me when I was 16 years old. For the first four years it was quite slow, but you noticed it.

It has now been eight years. I should be a proud woman, proud of my body and proud that I “wear it so nicely”. I am not.

Since 2017, my body has exploded into something I can not look at. It hurts physically and mentally to see my body in the mirror.

Too short a time since then I got confirmed what I hoped for most: That this is not self-inflicted. I was happy, of course. This could be fixed!

The joy lasted until I realized that I was not going to get help from the state. The hospitals have already rejected the referral.

If I ever to get well, I have to go to private hospital and pay for all treatment and surgeries yourself. The operations alone will cost around NOK 300,000.

In addition, I also have to pay for physiotherapy classes, pulsator and compression stockings.

—

You’re probably wondering on what is the disease called? Lipedema. My body is full of diseased fat cells that mutate at a rapid rate. It started first in the thighs, then it came in the arms, then the hips and finally in the legs.

Until I can afford to pay for the operations, I’ll probably look like the Michelin man. Everything I eat absorbs the diseased fat cells in my body.

Nutrition, fats, proteins – everything.

Research shows in addition to being a therapy-resistant diagnosis. I can actually do nothing to get rid of it on my own. It does not help to exercise or go on a diet, it will only make it worse. Believe me when I say I’ve tried.

I can not go up a flight of stairs without my thighs aching, or lifting shopping bags without my arms protesting.

If I am in a lot of activity one day, my body punishes me. If I eat, it punishes me. In addition, I have too much water in my body, day in and day out. My lymph nodes are unable to get water and waste products through the fat. The diseased fat cells press on nerves, and it is painful.

In the welfare state Norway has them not yet decided for how to treat this disease. Some people believe that liposuction is a purely cosmetic treatment and not very effective, but how can surgeons who specialize in this, say that it is the only way to go?

—

If I can not get help from the public hospitals, that means I have to go for many more years with this. The pain will get worse and my body will get bigger. I thought that if you got sick, you should get help from the government. But it’s a woman’s disease, so we should not care, then?

I am absolutely convinced that there are other women my age who constantly put on weight for no reason, without overeating.

I found out about the diagnosis via my mother, who knew a woman who suffered from the same thing. “It looks like you, Malene.” We went to the GP with the hope of getting an examination at Haukeland or Haraldsplass.

The GP looked at me like everyone else does, and I could almost guess what he was thinking: “You’re not sick, you’re just fat and lazy.” Prejudice.

He would refer me to the obesity clinic, but I would not join. I knew I was sick. I do not like food and eat little, but if you had seen my body, you would never have believed me.

Reluctantly, the doctor referred me to Haraldsplass and Haukeland. After a short time, I was rejected by both.

I booked an appointment with a private specialist, a surgeon, who has been working with lipoedema for a long time. During the investigation, he took pictures and provided a lot of information about the disease, and what is going on.

Do you know what the most grotesque thing I learned was? That the doctors who help him with these operations work at Haukeland or Haraldsplass. That is, the same people who have rejected my referrals.

So, what do you do then? Should I beg for money? Should I pray on my knees for help?

Sending a post to BT is a long way off, but I see no other way out. I want to support others in the same situation, and I hope that it can help spread information about lipoedema out into the country.