Christoph (28) has suffered from acne inversa since his youth. To remove the abscesses in the genital region, he had to be operated on more than 30 times
Christoph, what makes you special?
I suffer from acne inversa. When you read about acne on the internet, you think it’s a not so bad ailment. Pus pimples, blackheads, we all know them. But acne inversa is different. My skin disease is very complex – it mainly affects my thighs, groin and testicles. I am in constant pain and there are days when I can barely get out of bed. It started around the age of 15, in the 9th grade. Today I struggle with it every day and every night. ”
“ The acne can come from one day to the next and stay for several weeks or even months. On some days it is so bad that I have to disinfect and completely bandage the areas after getting up. This restricts my freedom of movement . But there are also days when I have no new outbreaks and I am almost pain-free. I always have between 8-18 abscesses on my body. Unfortunately, it is not yet known for sure why this disease occurs. Obesity, poor diet and smoking suspected as part of the cause.
When and how did you notice that something was wrong?
I was in my room with a friend and casually asked him if he had puggeli (abscesses) on the inside of his thigh. He said no and wanted to see what I mean. I took off my pants to show him the four to five red, painful abscesses on my thigh. He was a little shocked and said I should definitely talk to my parents about it. I did that too – and they immediately drove me to the family doctor, who diagnosed me with acne inversa.
What happened next?
We got a second opinion from a dermatologist. But the diagnosis remained the same – including the very few treatment options. Every doctor tells me the same thing: a healthy diet, no alcohol, no nicotine have a preventive effect. Antibiotics and lasers also help, but none of them last long. I’ve tried it; acne inversa started again three months after my antibiotic therapy. Lasering away the hair initially worked very well in the groin area. I was left for several months, but then the knots returned. Currently, I am committed to a healthy lifestyle.
Acne inversa is a chronic skin condition that causes inflammation of the areas of the skin. The se areas are mainly found on hairy areas of skin, the armpits and the groin area. Pea-sized lumps, abscesses, fistulas and scarring often form on the inflamed areas of the skin.
An abscess is an encapsulated collection of pus in tissue that is caused by inflammation. In Western Europe, around one percent of people are affected by this disease.
I worked as a roofer until 2017. At that time I was very overweight, smoked and drank alcohol. I stopped drinking at the end of 2017, which improved the acne a bit. In addition, I have lost more than 36 kilograms in the last two years. Since then, I have not had to operate as often as the abscesses are only superficial and no longer go that deep under the skin. But not much has changed in the number of abscesses despite my change in life.
How did your environment react to your illness?
My parents and siblings always supported me and encouraged me. I hardly talked about it with friends and work colleagues. Only my closest circle and my former boss knew about it. I had 30 operations during my apprenticeship. For my employer, that was certainly a hassle. At the end of 2017 I got the notice, I suspect that it was due to my illness and the failures.
How do the operations work?
While I’m under general anesthesia, the surgeon cuts open my abscesses, drains the pus, and rinses the wounds with a saline solution. The abscesses have to be opened, otherwise the pathogens they contain penetrate deeper and deeper into the tissue and infect muscles, organs or even bones. I’ve now had 36 operations under general anesthesia and around 100 procedures.
How are you today? What is your everyday life like with the illness?
Some time ago I had a horror experience while preparing for anesthesia, which triggered fears and a racing heart. After that, at times I was almost unable to leave the house. But I got myself up and about half a year ago the first improvement started.
It’s not easy with love. I was already in love, but nothing ever came of it. I need time to open up to someone because I am ashamed of the many scars. I always say that’s why I look like a gladiator.
My day always looks the same. I take a shower, take my medication and, depending on the circumstances, we have to disinfect and bandage the abscesses. In my free time, I spend a lot of time with cars. When I’m fine, I like to wash and clean them too. Another hobby of mine are police books and films. My wish is to become a police officer one day – but for that I have to get well first. I believe that one day something will be invented that can completely cure acne inversa and allow me to live a normal life.