What It’s Like To Finally Get Treatment For Your Mysterious Skin Condition

I have fought with HS for almost 15 years so I can tell you from firsthand experience that it's worth doing something to help yourself.

By Ophelia Thyne

Updated 11 months ago, January 16, 2024

I have fought with HS for almost 15 years so I can tell you from firsthand experience that it’s worth doing something to help yourself.

I’ve spent the majority of my adult life living with an undiagnosed case of Hidradenitis Suppurativa (HS). For years, no doctor could tell me what was wrong with me. Luckily, I finally started seeing an OBGYN who happened to be familiar with the condition and who immediately referred me to a dermatologist.

Even after a proper diagnosis, however, the thought of seeing yet another specialist scared me.

Over the years, I learned to manage my condition as best I could on my own. The thought of another doctor poking and prodding me below the panty-line, where my HS flare-ups tend to occur, was less than appealing. Years of outbreaks and scarring have made me a self-conscious person, you see. Although I’ve been working on loving myself, scars and all, I wasn’t at all eager to explore new treatment options.

Still, I knew I had to do it.

During the three weeks I had to wait before my appointment with the dermatologist, I was stressed and paranoid. A million questions and concerns dominated my mind: Does this doctor have real experience with HS? Has she ever encountered symptoms like mine? Is this going to end like every other doctor’s visit I’ve had in the past?

The day of my visit, I was incredibly nervous. Plus, I was dealing with a pretty bad flare-up, so I was physically uncomfortable.

First, a nurse entered the examination room. I could tell from her reaction that this was her first time dealing with something like HS. Immediately, my guard went up.

When the dermatologist finally entered, however, she was bubbly and kind. “My HS patients are some of the nicest people I know,” she said, perhaps sensing my unease. With this simple statement, she made me feel so much better—it was a massive relief just to know that she had other patients who shared my condition.

She asked me about my HS-related issues, and how I’d been dealing with them. After examining my upper thighs thoroughly, she reassured me that what she saw—the scarring and the “tunnels”—were standard for someone with HS. She scolded me for lancing my bumps, but I explained that doing so was the only way I knew how to cope.

She was very knowledgeable about my condition. In addition to the no-lancing policy, she advised that I wash with a special antiseptic soap, use a topical acne cream, and take a low dose of antibiotics for three months or so.

In all, my very first appointment with a dermatologist who actually knew about Hidradenitis Suppurativa went well.

I am just a Mom and a wife, not a doctor. But I recommend that everyone struggling with HS visit a doctor, regardless of how embarrassing it might be. I have fought with HS for almost 15 years so I can tell you from firsthand experience that it’s worth doing something to help yourself. Living with this skin condition does not have to be such a bad thing.