Even though hidradenitis suppurativa (HS) carries the alias acne inversa, it’s a reminder never to judge something by its Twitter handle. HS is a different beast to acne — and it suuuuucks.

(We know acne sucks too. But ask anyone with HS — it hits different.)

It’s is a skin condition that causes flares of painful bumps under the skin, and, unlike many cases of acne, there’s not really a cure. Damn. Sometimes they’re filled with pus. At other times they’re deep, hard nodules.

But don’t panic! You can keep this condition in check and lead a full, happy, healthy life — you’ll just have to make a few adjustments and get in there before symptoms become really bad.

We’ll walk you through the Lord Voldemort of skin conditions, what it is, how to manage it, and what to expect.

The short and honest answer: Nope.

The good news: You can avoid the worst of it by getting diagnosed and treated pronto. By tackling HS ASAP, you can prevent your symptoms from getting worse.

Getting on top of HS straight out the gate can also help you avoid complications, which can include:

  • infections
  • immobility
  • depression
  • some pretty gnarly looking scars

Yikes. Luckily, making lifestyle changes can be a crucial factor in avoiding flare-ups. For example, people who are overweight can reduce the risk by shifting a few pounds. Quitting smoking can also make a big difference.

You should also take these steps to reduce the risk of flares:

  • Avoid shaving in areas that flare up.
  • Wear loose clothing (you can finally be the hippie you always dreamed of becoming).
  • Try to keep your skin from getting too overheated or sweaty.

HS should not be taken lightly. Without proper care, the condition can become serious.

Doctors use the Hurley clinical staging system to describe how severe your symptoms are:Ingram JR, et al. (2018). British Association of Dermatologists guidelines for the management of hidradenitis suppurativa (acne inversa) 2018. https://onlinelibrary.wiley.com/doi/full/10.1111/bjd.17537

  • Stage I: This is mild HS, with isolated lesions that leave little or no scarring. You’ll want to catch HS at this stage.
  • Stage II: If you’re noticing lesions that keep coming back, leaving some scarring and creating tunnels under the skin that connect the bumps, you’ve got moderate HS.
  • Stage III: You may have widespread lesions that cause large-scale scarring and tunnels — this is severe HS, and it can lead to other complications.

As if lumps and boils weren’t annoying enough, HS also has beef with other areas of your body and mind. A 2019 review of studies found that people with HS are more likely to develop thyroid problems.Acharya P, et al. (2019). Thyroid disorders in patients with hidradenitis suppurativa: A systematic review and meta-analysis. https://www.sciencedirect.com/science/article/abs/pii/S0190962219323837

HS might also hike up your risk for diabetes and, in rare cases, skin cancer. If the conversation about your risk for other conditions hasn’t yet come up with your doctor, skip the small talk and make sure you bring it up.

A 2019 research review found that depression and anxiety are common in adults with HS.Machado MO, et al. (2019). Depression and anxiety in adults with hidradenitis suppurativa: A systematic review and meta-analysis. https://jamanetwork.com/journals/jamadermatology/article-abstract/2735255 If you experience either and feel like you could benefit from getting mental health support — Do. Not. Hesitate. To. Ask.

It won’t go away on its own. HS is a progressive disease, so it will worsen over time unless you receive treatment.

Unpredictability is the name of the game with HS. Try to call its bluff, it’ll call yours right back. You may experience frequent flare-ups. You might also go long periods of time with clear skin. If you’ve had more than two flare-ups in 6 months, a dermatologist is likely to diagnose HS.

Antibiotics might be just what you need to kiss flare-ups goodbye. (Don’t literally kiss them, that’s probably quite unpleasant and painful.) A dermatologist will often prescribe antibiotics as a cream, gel, or lotion, such as Clindamycin, for people with milder symptoms.

For moderate to severe cases, you’ll likely get a prescription for antibiotics that you take by mouth, which may include:

  • tetracycline
  • clindamycin
  • rifampin
  • metronidazole
  • moxifloxacin
  • dapsone
  • ertapenem
  • bactrim

Depending on your symptoms, you might need to continue taking the antibiotics for several months on a long-term basis.

They’re not your only options for managing HS. Your dermatologist might also suggest creams, drugs that have effects through your whole system, hormone therapy, and pain medication.

People with HS may need surgery. But it’s better to catch it way before you get to that point.

HS isn’t contagious, and it isn’t sexually transmitted. (Phew.)

Some partners, however, might not be wise to this. It’s best to explain it and communicate clearly before you enter into any needlessly awkward sexual encounters. And if they act out, kick ’em to the curb. They don’t deserve you.

Although HS can’t spread to other people, it can spread to different parts of your body. As it gets worse, more lesions may pop up. HS breakouts typically happen where skin folds and rubs together — and yes, that does also mean the nether regions.

Lesions may well sneak into the following areas:

  • armpits
  • buttocks
  • groin
  • the area around the genitals
  • breasts

Spreading occurs when the infected nodules or boils burst (and yes, that hurt to type, let alone read over). This is what leads to the more severe symptoms, like tunnels and scarring.

Stopping the spread of lesions is another reason to catch this bastard early on.

A 2020 research review called HS “one of the most important disease[s] with unmet needs in the whole field of dermatology.”Szepietowski J.C. & Matusiak Ł. (2020). Hidradenitis suppurativa: The disease which researchers and clinicians. https://www.karger.com/Article/FullText/505542

While this might not be exactly what you want to hear, it does mean that researchers are learning more and more about how to help people with this condition.

Studies have identified bermekimab,Gottlieb A. (2020). A phase II open-label study of bermekimab in patients with hidradenitis suppurativa shows resolution of inflammatory lesions and pain. https://www.jidonline.org/article/S0022-202X(20)30071-3/fulltext as a drug that shows promise for HS treatment. HCQ (hydroxychloroquine, yes, that hydroxychloroquine) might also have potential, but more research is needed.

Science people also recently studied how doctors can use infliximab more effectively to treat HS.Oskardmay AN, et al. (2019). Determining the optimal dose of infliximab for treatment of hidradenitis suppurativa. https://www.jaad.org/article/S0190-9622(19)30785-6/fulltext

The Hidradenitis Suppurativa Foundation sponsors research projects every year to support a wider understanding of HS.

So this condition is a whole heap of not-fun. But you’re in good hands, and those hands are learning more about how to help you not feel like shit during a flare.

Early diagnosis and treatment can help you make sure HS doesn’t f*ck with your whole life. However, it’s a progressive condition, and you’ll have to make adjustments to reduce flares and increase comfort while flares are happening.

The questions above can kick off a helpful dialogue with your doctor. Asking the right questions will get you closer to the right answers — and these will go a long way toward making sure you’re living your best life with as few lesions as possible.