I Have Hidradenitis Suppurativa, Here’s Everything I Use To Manage It
I've gotten my routine down to a science
I knew my hidradenitis suppurativa (HS), a skin condition that causes painful lumps to form under the skin, had gotten bad when I was sobbing during a shower in Sevilla, Spain, praying for something—anything—to make the pain go away. My armpit was swollen with an infected cyst spanning from one end to the other, and I was getting sharp pains every few minutes. On top of that, I had a fever and could barely move, let alone put my arm down. It was the worst my HS had ever been, and I was in a foreign country waiting for the abscess to come to a head. I alternated between hot and cold compresses before dragging myself to the hospital, where they gave me some painkillers, an antibiotic to stop the infection, and sent me on my way. It didn't help much; three days later came the sweet relief of a drained cyst, the skin finally thin enough for rivers of pus to escape. I made my partner video the entire thing, partly for posterity, but mostly as evidence that I had survived.
A few months later I'd get a golfball-sized lump on my chest. Then there would be the cyst in the crease of my thigh, a slow-healing wound that would drain over the course of several weeks. But I'm one of the lucky ones. I have moderate hidradenitis suppurativa, also called stage two; some people with my condition can't work, with cysts so painful that they can't physically move.
HS is defined by the National Organization for Rare Disorders as "a chronic condition characterized by swollen, painful lesions, occurring in the armpit (axillae), groin, anal, and breast regions." No single cause has been identified (some suspect it could be genetic), but it's related to an obstruction of the hair follicle and sometimes inflammation of the sweat glands, causing pus-filled abscesses that can progress to deep, inflamed clusters.
The various stages of HS are categorized by the Hurley System, which grades severity. Stage one is the mildest and features a single cyst without sinus tunneling. Stage two is characterized by multiple lesions in one area with limited tunneling, meaning that you can still see the skin between lesions. Stage three features multiple interconnected tunnels and affects an entire area of scarring. HS affects women three times more than men, and black women are at the greatest risk of all. Aside from being painful, there are social implications of living with HS, too: a draining cyst smells, and the scar tissue can develop in often intimate areas. When HS first appears, it can look like acne or regular cysts, according to board-certified dermatologist Shari Sperling, which is why it's important to get an official diagnosis and proper treatment.
When I was first diagnosed in 2013, I'd been dealing with my condition for a few years, which was mostly me waiting for the cyst to go away. It wasn't until I stumbled upon a years-old blog post that recommended the elimination diet to help with HS that I felt some level of relief. I followed the diet for a few weeks, discovering through trial and error that my flare-ups are mainly triggered by sweets and that I have to be extra-careful during any hormonal shifts like ovulation or my period. I also don't shave often, which mitigates the possibility of getting an infection from nicking myself with a razor. The changes have helped me to live a close-to-normal life, and it's been a series of careful negotiations to keep my disease in check.
But it's worth it. It's rare that I deal with major flare-ups anymore, although I know the balance can be thrown off at any moment. These days, I'm mostly focused on managing existing boils and seeping scars, which reoccur in the same areas every few weeks, making sure they don't progress to large, infected cysts. I'm always in pain, but I'm managing, and above all, I'm grateful. In the past six years, I've figured out what works for me, and in that time I've built up an emergency kit of sorts—a mix of prescription washes, homeopathic remedies, and beauty products that pull double duty.
Read on to find out everything I use.
This antiseptic cleanser was prescribed to me by my derm, and I use it daily in the shower. It's great for minimizing the bacterial load around the affected areas and keeping it clean. It comes in handy especially when I have a slow-healing cyst, and helps to ensure I won't get an infection.
Walgreens, Antiseptic Skin Cleanser, $10.79, available at Walgreens.
A new add to my routine, I spray this directly on open cysts. I hate to call anything a "miracle," but this has definitely helped with calming active and open wounds. I spray this before applying a thick layer of Manuka honey, and the combo has become a consistent go-to.
Tower28, SOS Daily Rescue Facial Spray, $28, available at Tower28Beauty.com.
If I'm draining, tape is essential for keeping gauze in place. I opt for the "hurt-free" option by Band-Aid for its non-irritating adhesive. This is important for me because I've had negative reactions to other adhesives in the past, so this is my go-to, especially if I'm dressing a wound for days at a time.
Band-Aid, Hurt-Free Paper Tape, $4, available at Amazon.com.
I also like these non-stick pads, which don't stick to open wounds which can slow down healing.
Band-Aid, Hurt-Free Non-Stick Pads, $3, available at Amazon.com.
This almost goes without saying, but alcohol is a must. The biggest danger of life with constant open wounds is infection, so it's important to sanitize and then sanitize again.
Walgreens, Isopropyl Alcohol 70% First Aid Antiseptic, $3, available at Walgreens.com.
In order to minimize the chances of my cysts getting infected, I don't touch my skin with my bare hands. I apply everything with Q-tips instead, which ensures that I'm not accidentally adding bacteria to the area.
Q-tips, Antimicrobial Cotton Swabs, $9, available at Amazon.com.
Clindamycin is a popular treatment for HS, and this works well for cysts that haven't drained and are just starting out. I use this at the first sign of a lump, and it helps to keep it contained.
Clindamycin Phosphate Lotion, available by prescription.
Manuka honey is great for healing, and has been a game-changer in my care routine. I alternate between a manuka honey prescription—ManukaMed Gel—and First Honey Sterile Honey Ointment, an over-the-counter option that offers similar benefits and results.
First Honey, Sterile Honey Ointment, $10, available at Amazon.com.
If I eat too many sweets, I can tell almost immediately, my body sending out tingly signals to my active cysts. My first line of defense is a bottle of Advil, which I carry everywhere. Ibuprofen is a great anti-inflammatory option, and while I don't take this every day, it helps in the event of a potential flare-up.
Advil, Ibuprofen Tablets, $14, available at Amazon.com.
HS is classified as a chronic "auto-inflammatory" skin disease, so a natural anti-inflammatory is a must. Turmeric works really well for me, and I take it in pill form and drink turmeric lemonade too (I have a great recipe, DM me for details). I'm also a big fan of the Snow Fox Skin Care tablets, which are formulated with black pepper for increased efficacy.
Snow Fox Skin Care, Guard: Immune Support For Well-being, $25, available at SnowFoxSkincare.com.
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