After my previous introduction, I want to share the story of my Hidradenitis Suppurativa.
The first signs of HS
I have been living for about eight years with a chronic condition known as Hidradenitis Suppurativa, which I will also refer to by its English abbreviation, "HS".
It causes recurring cysts and abscesses that can leave scars in areas such as the armpits, groin, and perianal region.
It all began when I was 17, when I developed my first cyst in the pubic area. It was surgically removed because it was thought to be an ingrown hair, but since it seemed like an isolated case, no one suspected anything more serious.
At around 19, after a severe case of stomatitis, I developed two abscesses: one under my right armpit and one on my buttock near the perianal area. They caused so much pain that I could no longer sit down or tie my shoes without help. I looked like RoboCop whenever I took a step or tried to walk.
I began visiting different hospitals, but none of the doctors could answer my question: "What is happening to me?"
My first Hidradenitis Suppurativa diagnoses
It was only the staff at the hospital in Desio, near my hometown of Milan, who first told me: "It is a chronic condition. You will live with it for the rest of your life. In severe cases, extensive surgical removal of the affected skin may be considered."
Those words were difficult to process and sent a cold shiver down my spine, but I still did not fully understand how serious the condition was, nor did I have a name for it.
After a long series of visits to hospitals in the area, I finally saw a dermatologist who diagnosed me: "You have Hidradenitis Suppurativa. It will be part of your life, with better and worse periods and times when symptoms flare. At present, there is no definitive cure."
"Great," I thought. "I have a new lifelong companion, and now I even know its name! But how can I deal with the pain from these two abscesses?" I asked.
That was when I was prescribed the first of many antibiotics, "Tetralysal". During treatment, the two abscesses, each of which had grown to about 4 cm, drained on their own.
The calm before the storm
At this point, my Hidradenitis Suppurativa story entered a relatively quiet period.
I tried not to think about it and focused on making the awful scar under my right armpit look a little less noticeable. In my experience, HS left me particularly prone to keloid scarring, with raised scars that felt hard and were very visible. In short, every now and then I found myself with a few charming new friends on my skin :).
Apart from a few isolated episodes, including one near my ear, this period of my life was fairly uneventful from a clinical perspective. I also had lesions around my face and chin. They may have been nodulocystic acne, which can occur alongside HS, or HS itself.
My most difficult period with Hidradenitis Suppurativa
After about two quiet years, however, my Hidradenitis Suppurativa became more complicated. I began noticing many boils and spots on my back, some of them very large and painful to the touch. At the time, I was also seeing a hair specialist for ongoing hair loss. I wondered whether stress or HS might be involved. Since he was also a dermatologist, he first prescribed one antibiotic, Miocamen, and later another to take alongside it, "Bactrim". Bactrim is a powerful antibacterial medication, but Hidradenitis Suppurativa is NOT caused by bacteria, even though antibiotics can sometimes be used for their anti-inflammatory effects or to manage secondary infection. In my case, the results were disappointing.
The situation on my back kept getting worse and, as if that were not enough, two abscesses appeared on my chin. Luckily, I could hide them with my beard. "Keep going," he told me. "Use this cleanser and do not stop the antibiotics. I treated dozens of soldiers in my day." He was about 80 years old. I appreciated his years of service, but I also found myself wondering whether retirement might be worth considering...
Tired of the situation and increasingly worried, I returned to my former dermatologist once the hair loss issue had been addressed. "Luca, you should have come to me sooner! This is severe acne vulgaris on your back, and at this point the remaining option is to begin treatment with isotretinoin." "Isotreti-what?" The name sounded even more alarming than the acne, but unfortunately she was right that the situation had become unmanageable without a more intensive treatment. "It might also help your Hidradenitis Suppurativa, which could itself be related to this acne." "Perfect, two birds with one pill!"
Hidradenitis Suppurativa and isotretinoin
I then began six months of treatment with this retinoid, a powerful medication that improved the acne on my back but, at the same time, made everyday life extremely difficult for me.
For me, the side effects included:
- dry mucous membranes, which made it impossible to wear contact lenses, and yes, I am rather short-sighted
- skin sores
- constant thirst, which made me feel like a camel after a 30-day trek through the Sahara
- worsening of my Hidradenitis Suppurativa.
"But wait," you might be thinking, "wasn't it supposed to improve HS?" In my case, as in the experiences reported by some other people, it did not have that effect. I ended up with some new lifelong friends, quite literally: two on my chin, one on my buttock, and one in my groin. You might think I could simply take the same antibiotic as before, but I was told that combining it with the retinoid could cause dangerous pressure around the brain, known as intracranial hypertension.
Gradually, while applying clindamycin topically and using boric water compresses under medical guidance, some of the abscesses drained on their own. One of the facial lesions, however, also reached about 4 cm and had to be surgically removed. Before surgery, the wound was packed with gauze for a few months to reduce the size of the cyst and the resulting scar.
A practical HS treatment I experienced: wound packing
On this point, I can only share my personal experience, not medical advice. If you have HS and a particularly swollen abscess, seek help from a qualified medical professional rather than trying to drain it yourself. After drainage, my care team used a packing strip, meaning a small piece of gauze placed inside the wound and soaked in Betadine, with the dressing changed daily.
In my case, this kept the wound open and allowed it to continue draining while inflamed. The goal was to reduce the size of the cyst before surgical removal and potentially limit scarring if it did not resolve on its own. Wound packing is not appropriate for every abscess and should only be performed and managed by a healthcare professional.
Of course, I once again developed a large keloid on my face, carefully hidden by my beard. Thankfully, my Southern Italian roots mean I am not exactly short on facial hair. I know hair follicles are involved in HS, but there had to be at least one upside, right?
I then began Kenacort injections to reduce the keloid. After several injections, about four in total, along with a silicone-based gel, it eventually became flat.
I cannot say the same for the hair I lost.
My latest flare
I then enjoyed another period of relative wellbeing until November of the previous year, when occasional episodes began again. The first was under my right armpit. With topical clindamycin + Tetralysal by mouth for one month, as prescribed, it eventually drained and settled. After that, new abscesses appeared: two on my buttocks, one in my groin, and another under my right armpit.
I decided to see a different dermatologist. He recommended starting laser hair removal and, if the HS returned or worsened, another 12-week course of oral antibiotics, Dalacin and Rifadin. In the meantime, he prescribed Zithromax to manage the situation. He explained that it did not cause photosensitivity and was compatible with laser hair removal.
I began laser hair removal in the affected areas, excluding my face, and it seemed to be going well. Then, over the following weeks, two abscesses appeared under my left armpit, each about 2 to 3 cm. The pain became unbearable, so I had them surgically opened with a laser and began another course of wound packing. This allowed me to avoid stitches that might have interfered with the laser hair removal treatment.
So here I am, with a little less hair than before and a couple of pieces of gauze tucked into my armpit. "Seriously, isn't there any good news?" Yes, there is, but I am not going to reveal it just yet. I am about to begin a new journey, and I will tell you all about it in my next posts. Warm wishes to everyone 🙂
This story continues: read how I am doing today, seven years later.
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