And why the condition can be so hard to diagnose.
I had just returned home from the best summer of my life. It was 2012, and I’d spent the last three months interning at Southwest Airlines in Dallas, spending most of the summer travelling on standby with no preplanned destinations.
But when I returned home ready to start my senior year of college, the lymph nodes near my armpits were swollen and painful. My family doctor and I agreed that it was likely fatigue from an eventful three months.
I took it easy my fall quarter at school and tried not to push myself too hard, but the swelling and pain persisted. Sometimes the swelling would go down, only to return a few days later.
In the winter of 2013, I moved to northern Wisconsin for an internship as an on-air reporter. Carrying heavy camera equipment around all day and working odd hours took a toll on my body.
My right armpit became even more inflamed and turned a purplish colour. I went to the emergency room in immense pain, and the doctors ran blood tests to ensure it wasn’t something serious like cancer. The tests were all normal.
I was in and out of the E.R. for the next month as abscesses began to form in my underarms.
The doctors would lance the boils, providing much-needed relief, but the wounds didn’t heal. Instead, they just continued to leak fluid. This drainage would be a near constant for the next seven years.
I wound up in urgent care at the end of February 2014. At this point, I couldn’t carry the heavy camera equipment or even last a full day at work.
At urgent care, a doctor whom I will never forget took a look at my armpit and finally diagnosed me with hidradenitis suppurativa.
I cried in relief and asked what I needed to do to cure it. He then informed me that there was no cure and handed me a brochure before recommending that I look for a dermatologist. The fight for treatment began.
As I would come to learn, hidradenitis suppurativa is a painful, chronic skin condition that happens when hair follicles become obstructed for some reason, the Mayo Clinic explains.
Those reasons are yet to be fully discovered; experts aren’t sure of the root cause behind the condition, though they do have theories.
Hidradenitis suppurativa doesn’t happen because of an infection or hygiene-related issues, which are common misconceptions with this kind of condition. Instead, it could have hormonal, genetic, or immune-related causes, according to the Mayo Clinic.
No matter the cause, I know very well that the symptoms of hidradenitis suppurativa can be excruciating and debilitating. According to the American Academy of Dermatology, symptoms of hidradenitis suppurativa include:
1.Breakouts that look similar to pimples or boils. These breakouts typically happen in areas where your skin folds, like the groin, underarms, buttocks, and beneath the breasts
. The bumps may go away and come back, or they can stay put.
2.Bumps that rupture and release smelly liquid. “The skin can break open and ooze,” Andrea L. Niemann, M.D., clinical assistant professor at the Ronald O. Perelman Department of Dermatology at NYU Grossman School of Medicine, tells SELF.
3.Scarring, which can thicken over time.
4.“Tunnels” that form under the skin. “[The abscesses] tend to be quite tender. Over time, you can get more of them and get linking of these inflammatory areas and scarring,” Dr. Niemann says.
5.Infection.
As the AAD notes, a person’s hidradenitis suppurativa symptoms can change pretty rapidly, which can make the condition harder to diagnose. Complicating matters, there’s no one test doctors can use to definitively diagnose hidradenitis suppurativa.
“When I make a diagnosis, typically I am looking for the patient to have at least two instances of recurring abscesses or deep-set pustules in [the folds of the skin],” Benjamin Kaffenberger, M.D., a dermatologist at the Ohio State University’s Wexner Medical Centre, tells SELF.
Dr. Neimann agrees that it is a hard disease to diagnose because other things, including inflamed cysts or hair follicles, can look similar. “If it’s mild, there’s usually a delay in seeking care,” she says. In fact, as I began to learn more about the condition, I realized that during my teens, I would get boils that would come and go.
This makes sense because hidradenitis suppurativa symptoms typically first occur sometime after puberty, with a majority of patients being women who begin to experience symptoms in their late teens and 20s.
Since my symptoms weren’t yet as bad as they would become, it wasn’t something I thought to discuss with a doctor—but early diagnosis is key for managing symptoms as well as possible.
If you’re dealing with any of the above symptoms, it’s time to get in touch with a dermatologist. Dr. Kaffenberger recommends seeing a specialist if you can.
Both Dr. Kaffenberger and Dr. Neimann acknowledge that this is a tough thing to talk about since people are usually embarrassed and don’t want to show their doctor these areas of their body.
However, both stress the importance of seeking care earlier rather than later so there is a better chance of managing symptoms. Also, remember that looking at skin conditions is literally a dermatologist’s job description.
Whatever you show them is likely nothing they haven’t seen before, especially if you’re seeing a dermatologist who specializes in hidradenitis suppurativa. To find a doctor in your area who specializes in the condition, check out the Hidradenitis Suppurativa Foundation.
Most of all, know that there is hope. Medications, including antibiotics and biologics (which suppress your immune system response), can help manage symptoms and keep things under control.
(Keep in mind that your treatment options may change over time based on new research and newly available therapies. Make sure you have ongoing conversations with your doctor about which treatment options may be best for you.)
There are also a lot of lifestyle changes that might help you make life with hidradenitis suppurativa more comfortable.
Beyond that, you can join Facebook groups like Hidradenitis Suppurativa Support Group and Hidradenitis Suppurativa Warriors, which offer an abundance of resources for managing life with hidradenitis suppurativa, including help finding doctors who are knowledgeable about the condition.
There are other people out there who know just what you’re going through—and how you can try to deal.
This originally appeared on Self US
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