When I was about fifteen. I noticed I had a tiny open spot in my right armpit. I was so scared that I showed my mom. A few days later she took me to the doctor. They said it was acne inversa and that it would go away. It went away as they said and I didn’t think of it again.
Then, in September 2012 I had a pea sized lump in my right armpit and smaller ones in the left. It was at a birthday party that the pea sized one exploded. I was so scared. I asked my sister to help me bandage it. At the end of the month it didn’t get better so I went to the hospital. They said I was eating too much greasy food and that I had poor hygiene. Took their diagnosis and thought it over.
I did a web search of my symptoms and came across Hidradenitis Suppurativa (HS). It fit!
I also saw that it was called acne inversa and thought back to all those years ago. I was twenty-five and scared. When I went to my doctor he confirmed HS and then told me I needed surgery! He referred me to a general surgery. At my first appointment with the general surgeon.
On July 19, 2013 I had my first surgery to remove HS from in my armpits. The surgery went well and I seemed to be on the road to recovery. Only, I wasn’t. While my left armpit healed, my right had yet to.
I went to to the dermatologist in 2014 who gave me Kenalog injections into my armpit as while as the other HS spots I had. These shots, along with other medicine, worked for about seven months. Then, after receiving one of these Kenalog injections into an HS bump on my side, I devolved a dent in my side. This turned out to be atrophy caused by the Kenalog injection I had received.
This meant I was back to square one will my HS treatment. I have creams I received from the dermatologist to help with HS. These are also used to treat acne, which is what HS looks like.
But do not, please do not, think that HS is acne. While it may look like acne, HS is far worse. There is no treatment for HS. There is no cure for HS. Most doctors don’t know what HS is. Patients are ashamed to tell their doctor about their HS spots.
For me, I didn’t tell my doctor about HS spots I got because I was ashamed.
What makes having HS worst for me is I also have Psoriasis and Psoriatic Arthritis. With these two added to HS, everyday is hard. I never know when I will have an HS flare. And then when I get a flare, its the worry about how big the flare will get and then when will it pop. After the flare pops, its the worry about the smell, making sure the bandage is in place. Making sure my psoriasis is covered so it doesn’t bleed or flake.
By this time, I don’t want to leave the house. I began to worry about what other people will think, that they will see the flare, smell me.
One thing I hope for everyday is awareness for Hidradenitis Suppurativa. With awareness will come treatment. With awareness there may even come a cure for Hidradenitis Suppurativa.