Hidradenitis suppurativa (HS) (also called acne inversa) is a painful, long-term inflammatory skin disease. It causes painful lesions that commonly appear in areas where skin rubs together. This includes the armpits, buttocks, and groin, including the genitals, when hair follicles become blocked. HS can also affect the vulva, including the labia majora and perineum.

In an interview with myHSteam, Dr. Heather Richmond shared her expertise on how to diagnose and treat hidradenitis of the vulva. Dr. Richmond is a board-certified dermatologist with more than 10 years of experience treating people with HS. She currently practices at the Dermatology and Laser Surgery Center in Houston, Texas.

What Is Vulvar HS?

Vulvar hidradenitis suppurativa refers to HS on the vulva, the external female genitalia. According to Dr. Richmond, HS affecting the vulva is the “same as or similar to [HS that affects] other parts of the body.” Common symptoms include “recurrent red, painful nodules, which sometimes open and drain,” she said.

Other symptoms of HS include:

• Comedones (blackheads)
• Tender or painful bumps or nodules (lumps) in the skin
• Ruptured lesions that drain foul-smelling pus
• Tunnels under the skin (sinus tracts) between lesions
• Scarring

HS of the vulva can have serious complications. One complication is the formation of perianal fistulas — abnormal skin tunnels between the anus and perineum. Vulvar HS can also occur along with Crohn’s disease — an inflammatory bowel disease — of the anus or genitals.

While HS can affect different areas of the body, research suggests that people with vulvar HS are less likely to have HS in the armpits. Studies show that in those with vulvar HS, lesions mostly stay in the groin and nearby areas.

HS can greatly impact quality of life. In addition to physical pain and disability, HS can lead to psychological distress. Having HS can also negatively impact a person’s social life and sexual intimacy.

How Is Vulvar HS Diagnosed?

Diagnosing HS involves a thorough medical history and physical exam. Your doctor may need to order laboratory tests to rule out other conditions.

Medical History and Physical Exam

Your healthcare provider will start by asking detailed questions about your symptoms. Be prepared to describe what symptoms you have and what parts of your body are affected. It’s also important to tell them how long you have had symptoms. Since some forms of HS can run in families, let your doctor know if you have any family members with HS.

During a physical exam, your doctor will examine your skin to look for HS lesions. There is no specific test that can diagnose HS. “It’s really a clinical diagnosis of how it looks and the chronicity over time,” Dr. Richmond said. “It’s not just one episode but something that keeps coming and going and waxing and waning over months and years.”

Your doctor may order tests to rule out other conditions that could look similar. A bacterial culture can reveal different infections, while a skin biopsy can help detect genital Crohn’s disease.

Misdiagnosis

It can be difficult for people with HS to get a proper diagnosis. Research shows it typically takes about 10 years from the first HS symptoms to a proper diagnosis. A major reason for this delay is that HS is frequently mistaken for more common skin infections.

“Cultures are often done of inflamed areas to rule out primary or secondary bacterial infection or abscess,” Dr. Richmond explained. Bacterial infection or abscess is the most common misdiagnosis she sees.

“Most patients are told for years they have staph infections, which is the most common bacteria to cause abscesses in the skin. All too often, HS is never discussed, and patients have never heard of this diagnosis despite years of recurrences,” she said. “While HS patients can develop secondary bacterial infections within their HS lesions, this is not the primary process. HS is a chronic inflammatory condition that will cause redness, swelling, and drainage in the absence of bacteria.”

Dr. Richmond listed other conditions that HS can be mistaken for: “Some sexually transmitted diseases can be similar in the sense of either swollen lymph nodes or draining areas or ulcerations on the genitalia. Those would be things like lymphogranuloma venereum, chancroid, syphilis, [or] herpes.”

Bacteria cultures are important to rule out infection as a cause for lesions. However, Dr. Richmond stressed the importance of finding a healthcare provider with experience treating HS: “You have to see a physician who can really recognize these different conditions.”

How Is Vulvar HS Treated?

Treatment options for vulvar HS include antibiotics, corticosteroids, hormonal treatments, biologics, and surgery. These treatments may also be used for HS on other parts of the body.

Antibiotics

Dr. Richmond often prescribes antibiotics for vulvar HS. “Many patients will start with antibiotics because they will treat any bacterial infection that may be co-existent, but [they] also have anti-inflammatory benefits,” she explained.

Certain antibiotics are frequently used to treat HS due to their anti-inflammatory effects. In cases of severe disease, Dr. Richmond said intravenous antibiotics can be used to bring lesions under control.

Corticosteroids

Corticosteroids can be very effective for managing both acute and chronic inflammation in HS. When HS causes widespread, severe inflammation throughout the body, doctors might prescribe oral steroids. However, Dr. Richmond prefers using corticosteroids in a more targeted way. “I do a lot more injection of steroid[s] into individual inflamed lesions. I find that to be very helpful,” she said.

Hormonal Therapies

Researchers still aren’t entirely sure how hormones impact HS, but hormonal therapies may help control symptoms. Some people notice that their HS symptoms, or flare-ups, get worse at certain times in their menstrual cycle.

“A lot of women have hormonal flares,” Dr. Richmond said. In her experience, these flares can be treated with oral contraceptives (birth control pills). Another option is “a medication called spironolactone, which has anti-androgen effects, and can be used in women,” she said. Anti-androgen medications are used in women to offset the effect of male sex hormones that, according to some scientists, may contribute to the development of HS.

Biologics

For moderate to severe HS cases, doctors may recommend biologic medications. Biologics are special injected medications that work by calming overactive parts of the immune system that contribute to inflammation in HS. Dr. Richmond notes that she regularly prescribes biologics.

Other Treatment Options

Several other medications may help treat hidradenitis suppurativa as well. The best treatment for you will depend on your symptoms and disease severity. These treatment options include:

• Retinoids (not safe during pregnancy or breastfeeding)
• Immunosuppressants (drugs that lower immune response)
• Metformin — A medication commonly used to treat type 2 diabetes
• Topical resorcinol

If your HS is causing you pain, your healthcare provider may suggest over-the-counter (OTC) or prescription pain relievers. Since chronic pain can affect mental health, your doctor or dermatologist may refer you to mental health or pain management specialists to manage your HS pain.

Surgery

Several surgical procedures may be used to treat HS on or near the vulva. Surgeries for HS include:

• Unroofing/deroofing — This procedure removes the skin over a lesion. It’s used for moderate to severe hidradenitis suppurativa.
• Punch debridement — Also called limited unroofing, this procedure removes individual inflamed bumps.
• Surgical excision (removal of lesions) — This intervention removes all affected skin and may require a skin graft in order to heal the wound. It’s used in people with severe HS or recurrent abscesses.
• Abscess incision and drainage — Used mostly for short-term relief of pain.

Dr. Richmond regularly performs outpatient surgical procedures for HS in her clinic. However, she warned that surgery for HS is not always the right choice. Before deciding on a surgical treatment option, she considers where the lesions are located and how stable they are. For example, chronic lesions that occur in the same place for months or years are good candidates for surgery. If they keep moving to new locations, however, “I would strongly consider maximizing your medical therapy as much as you possibly can,” she said.

Surgery on a sensitive part of the body such as the groin — especially the vulva — can be scary to think about. It can also be complicated. While simpler procedures like unroofing typically cause minimal scarring, more extensive procedures, such as wide excisions, can be extremely complex, with many potential complications.

How Can You Manage Your HS at Home?

While medical treatment is an important part of managing HS, there are several ways to care for your HS at home. For acute pain relief, Dr. Richmond recommended warm compresses and nonsteroidal anti-inflammatory drugs like ibuprofen (Advil) and naproxen (Aleve).

Dr. Richmond also recommended treating flares with “topical anesthetics, such as Preparation H with the topical anesthetic or something called Boil-Ease.” These topical anesthetics (lidocaine and benzocaine) are OK to use on skin affected by flares. To help prevent flares, she suggested wearing loose clothing that doesn’t create too much friction. “Many patients have flares with activity and exercise,” she added.

Weight loss is another important part of HS home management. Research shows that people with obesity have a higher prevalence of HS and their HS tends to be more severe. Dr. Richmond recommended dietary changes to help with weight loss and said that “anti-inflammatory diets or vegan diets have some anecdotal benefit.” She also highly recommended quitting smoking, since “smoking can significantly flare hidradenitis.”

While home management can make a difference with HS, Dr. Richmond emphasized the importance of getting proper medical care: “Ultimately, finding a provider who is comfortable with the management of hidradenitis, who can really start to get those flares under control, is necessary, because there is only so much you can do to prevent this with home management.”

You Are Not Alone

Dr. Richmond knows that living with HS is not easy: “It’s painful. It’s really impactful to daily life, and there’s an embarrassment factor, so some people are hesitant to talk about it.” If you’re dealing with vulvar HS, remember this message from Dr. Richmond: “You’re not alone,” she said. “It’s a really common problem that I think people don’t talk about.”

Talk With Others Who Understand

On myHSteam, the social network for people with hidradenitis suppurativa and their loved ones, more than 46,000 members come together to ask questions, give advice, and share their stories with others who understand life with hidradenitis suppurativa.

Are you or someone you care for living with hidradenitis suppurativa? Share your experience in the comments below, or start a conversation by posting on your Activities page.