Hidradenitis Suppurativa 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 appeared in my underarm area and also under my breasts. These were classic areas for HS to appear and should have garnered a diagnosis reasonably quickly, but in reality, it took me a total of 9 years to get a proper diagnosis.

Controlling the symptoms of HS

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 progress to a worse state, and sometimes we will experience improvement.

Forming bumps in unexpected places

Something that I wasn’t prepared for was that I was developing bumps and lesions in unusual places. This happened when I would try a regimen either when I felt like my progress had stagnated or when something caused me actually to become worse. It was drilled into my head that there were only specific places on my body where HS was supposed to appear. Logically, my skin would touch and rub against itself in the underarm area, and also in the crevasse in the groin and the inner thigh, as well as under my breasts. So why were there suddenly painful spots that were showing up elsewhere? Well, this happened a lot when my symptoms were worsening. But why was my body “coloring outside of the lines”?

Alopecia Univeralis and hidradenitis suppurativa

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 doesn’t seem to make a difference in alopecia universalis because we know that HS affects hair follicles. Some mechanism causes them to become clogged and start the malfunction cascade. Producing hair doesn’t seem to be a requirement in my case.

As I was going through my trials for treatments to find the best regimen for me, I was developing 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 they would sometimes be rubbed painfully or break open in areas with seams in the wig lining. Then, some appeared on my arms down to my wrists. A few popped up down around my knees and calves. My dermatologist seemed to be stuck on the idea that HS could only occur in specific areas where my skin touched, like groin, breasts, and underarms. But I was forming these same lesions in these other areas. She insisted I had somehow developed cystic acne, but it closely resembled these painful mini mountains of oozing fluid and pus that looked just like my other HS lesions.

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; it's another common location where cystic acne pops up. My dermatologist told me that I had cystic acne at the end.

I ended up having 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 had to deal with the facial bumps or the harrowing ones on my 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.

Searching for more information

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. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9326614/ "