My Hidradenitis Suppurativa Symptoms in Unusual Places

For years, it seemed like I had the typical symptoms of hidradenitis suppurativa. I had painful bumps that turned into swollen humps filled with fluid, blood, pus, and the dreaded stench that seemed to haunt all of those little mountains of pressurized misery. I started with abscesses in my groin area, but then some boils appeared in my underarm area and also under my breasts.

These were classic areas for HS to appear and they boils should have garnered a diagnosis reasonably quickly, but they didn't. It took 9 years to get a proper diagnosis.

An HS diagnosis and the search for treatment

After receiving this ever-important diagnosis of hidradenitis suppurativa, I started going through a non-stop trial and error to find what would work for controlling the symptoms. We HS warriors tend to be guinea pigs in this phase; nothing fits perfectly.

We are all at different stages of the disease, and there is no easy way to predict how our bodies will react to any given remedy. Sometimes things will not change, sometimes HS will worsen, and sometimes we experience improvement.

When lesions show up where they shouldn't

Something I wasn’t prepared for was the appearance of bumps and lesions in unusual places. This happened when I tried new regimens either when I felt like my progress had stagnated or when something made my symptoms worse.

It was drilled into my head that there were only specific places on my body where HS could appear. It made sense. Lesions usually appear where skin touches and rubs against itself in the underarm area, and also in the crevasse in the groin and the inner thigh, as well as under the breasts.

So why were there painful abscesses and boils suddenly showing up elsewhere? Well, this happened a lot when my symptoms were worsening. But why was my body “coloring outside of the lines”?

Navigating HS alongside alopecia universalis

What is different about me from a great majority of patients is that I have alopecia universalis, meaning I don’t have hair growing from any hair follicles anywhere on my body. Yes, I haven’t shaved my legs in about 21 years, when it all fell out. I also lost my eyebrows, eyelashes, the hair on my arms, and all of the hair on my head.

Hidradenitis suppurativa affects hair follicles, but that doesn't play out the same for people with alopecia universalis. Some mechanism other than hair growth causes hair follicles to become clogged and start the malfunction cascade. Producing hair doesn’t seem to be a requirement in my case.

Cystic acne or HS? Fighting medical dismissal

As I was going through my trials for treatments to find the best regimen for me, I developed HS lesions on my neck and scalp, plus some on my face. They were incredibly painful and even interfered with me wearing a wig, as boils sometimes rubbed painfully or broke open in areas with seams in the wig lining.

Then, some abscesses appeared on my arms down to my wrists. A few popped up down around my knees and calves. My dermatologist seemed stuck on the idea that HS could only occur in specific areas where my skin touched, like the groin, breasts, and underarms. But I was forming these same lesions in these other areas.

She insisted I had somehow developed cystic acne, but teh wounds closely resembled these painful mini mountains of oozing fluid and pus that looked just like my other HS lesions.

Why can't HS appear on the face or neck?

I asked, “Why can’t HS lesions appear wherever we have hair follicles?” I didn’t feel like I had suddenly developed cystic acne on my wrist and shin when the rest of my skin didn’t have cystic acne. I don’t have acne on my back, which is another common location for cystic acne. Despite my objections, my dermatologist diagnosed me with cystic acne in addition to HS.

Soon after that diagnosis, I had to change medications for one of my co-morbidities that I was struggling with, and I was shocked when it made a massive difference for both that disease and HS. I went from stage II lesions and tunnels to almost no disease activity; I now have about five pencil-eraser-sized bumps. All of the “stray” bumps went away completely.

Since starting this medication, I haven’t dealt with abscesses or boils on my face or scalp at all. This medication is not used as a treatment for acne; it’s a biologic used for autoimmune diseases. I failed out of Humira and Cosentyx along with three others, so I was thrilled when this last-ditch option worked – for two diseases, no less.

Advancing HS knowledge together

We still have so much to learn about hidradenitis suppurativa. HS has only been studied in depth for the past two decades, even though it has been documented since the 1500s. For a long time, the conventional wisdom was that it only appeared in specific body areas, but slowly, even that information is being adjusted.

If you need to discuss this particular issue with your doctor, searching for information from trusted sources like medical journal articles could be helpful to bring to your appointments. This article from the National Library of Medicine is an excellent source of current information.