So, if you’re reading this, you most likely have or know someone who has Hidradenitis Suppurativa (HS). I’m a 24-year-old male living in sunny South Florida. The humidity is through the roof, and the chub rub is well… rubbing. That being said, firstly, let me tell you how this disease has changed my life. If being 14 and already having zits on my face with a cracking voice was enough to hate the world. By god, buckle up young, Michael, because your world is about to change. HS misdiagnosis and going from dermatologist to dermatologist…it’s all ahead of you.
The first HS misdiagnosis
Firstly, I had been going to the dermatologist regularly for my acne. I asked him, “how come I even get pimples in my armpit?” He took one good look and said, “this will clear up with the antibiotics I prescribed you”. I smiled and nodded because he certainly wasn’t concerned about it. Which means I shouldn’t either, right?
A couple of months later, my face was better and subsequently, the pimples in my armpit were gone. However, it left a scar. I wasn’t too worried about it. As time went on, similarly my acne came under control. However, I still got these annoying cysts in my armpits time and time again. They itched, grew enormous, popped, and drained. They would become dry, and leave a scar.
I had another appointment with my dermatologist that coming week. So, I decided not to pop them by myself and let him do it. My appointment was on Thursday. On Monday that week, I woke up with a third nipple in my armpit. As a result, I couldn’t walk without keeping my arms out to the side. I mean it, the constant rubbing would infuriate me. Above all, I couldn’t get comfortable for the life of me.
My first mishap
On Wednesday, the day before my appointment, I was sitting in class. I was wearing a white shirt and my first public embarrassment unfolds. Meanwhile, I felt this warm fluid running down my stomach. When I looked down, I was covered in blood. Everyone was staring at me. After that, I was blushed faced and embarrassed.
I immediately ran to the bathroom and saw my cyst conveniently pop itself for me. I therefore went to the nurse and had her clean it for me, and the face she made when I showed her my armpits made me feel even worse than I already did. I could see the empathy in her face as she gently cleaned it. I told her I would be fine and grabbed a new shirt from my locker.
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More HS misdiagnosis …
My appointment on Thursday did not go well, either. For instance, the doctor was just as stumped as I was. I felt totally defeated. He said something to me that frustrated me more than anything. His exact words were, “maybe you just have to clean yourself in that area a little better.” If he only knew how hard I would scrub with a washcloth and antibacterial soap. He certainly would have never said that. I would be borderline crying in the shower because it hurt so much. His comment led me to seek a new opinion.
Not another HS misdiagnosis
After making an appointment with a new dermatologist, I felt relief because there couldn’t be two doctors that didn’t know what’s going with me, right? Unfortunately, I was wrong because she gave me the same antibiotics and creams as my last dermatologist. She said, “acne in the armpits is unusual but not impossible; let’s use this cream twice a day and start you on more antibiotics.” Leaving her office, I felt so distraught that I have golf balls growing in my armpits. I was thankful for the antibiotics because they lessened my flares but never made them go away.
Third Time Lucky – Finally
I gave it one more go with a new dermatologist, and finally, this one changed my life. As soon as I showed my weeping, scar-riddled armpits, he immediately said, you suffer from something called, Hidradenitis suppurativa. I remembered the smile on his face because he saw the confusion on my face with that kind of name.
The doctor subsequently followed this statement by saying there is no cure for it. However, we can make you comfortable enough to live your life. Above all, I finally have a name, and I’m not a medical phenomenon. It was like 10,000 pounds was lifted off my shoulders. So I was ready for the battle. He injected my cysts with a steroid that would lessen my flares’ size and frequencies. He gave me an antibacterial cream and special body wash. He was even cool enough to let me know I can call him anytime I have a severe flare-up and would sneak me in for injections.
Even though there wasn’t a cure, I felt optimism for once in my life regarding H.S. The research online, support groups, and countless diets have helped me keep this disease at bay. Although my armpits are stage 3 on the Hurley scale and groin at an early stage 2, I can confidently say I have found out what works for me and makes my life as painless as possible.
Talking about HS
When explaining this disease to others, firstly, I wanted to tell the people that mattered most to me. For example, it was only close friends, family and people I was intimate with. It was always received well, and certainly not a big deal. I did not have much self-esteem. So to my surprise nobody I was with sexually said anything about it to me. I would get occasional boils in the groin when it would flare. However, I would reassure my partner that it was not an STD but a non-contagious disease.
Recently, I found the love of my life on Tinder, of all places. Importantly, She accepts me for who I am and is extremely supportive towards me. I know when you’re down and flaring it can be so tough. However, it gets better, I promise.
About the Author
Michael Mineo is a 24-year-old Social Work Major focusing on Cognitive Behavioral Therapy (CBT), working towards an MSW at Florida Atlantic University in South Florida. He also suffers from HS and aspires to help fellow sufferers to the best of his ability. Michael enjoys being a first-time father, going to the gym, videogames, and spending time with family.