Hidradenitis suppurativa (HS) (also called acne inversa) is a painful, chronic, inflammatory skin condition. It commonly occurs in the armpits, buttocks, and groin, including the genitals. HS can also affect the vulva, including the labia majora and perineum. HS is a fairly common disease. It affects as many as 4 percent of people worldwide.
Recently, myHSteam interviewed Dr. Heather Richmond to discuss how to diagnose and treat HS of the vulva. Dr. Richmond is a board-certified dermatologist with more than a decade of experience treating people with HS. She currently practices at the Dermatology & Laser Surgery Center in Houston, Texas.
Vulvar hidradenitis suppurativa is HS that affects the vulva, the female external genitalia. According to Dr. Richmond, HS affecting the vulva is the “same or similar as [HS that affects] other parts of the body.” It causes “recurrent red, painful nodules, which sometimes open and drain,” she said.
Symptoms of HS include:
HS of the vulva can have serious complications. One complication is the formation of perianal fistulas, or abnormal tunnels in the skin between the anus and perineum. Vulvar HS can also occur along with Crohn’s disease of the anus or genitals.
While HS often affects multiple areas of the body, research suggests that women with vulvar HS are less likely to have axillary HS (HS in the armpits). In this study, women with vulvar HS had lesions mostly in the groin and surrounding areas.
HS can greatly impact quality of life. In addition to pain and disability, HS can lead to psychological distress. Having HS can negatively impact a person’s social life, including their sexual intimacy.
Diagnosis of HS involves a thorough medical history and physical exam. Diagnosis may also include laboratory tests to rule out other conditions.
Your doctor will want to know what symptoms you are experiencing, what parts of your body are affected, and how long you have had symptoms. They will also want to know if you have any family members with HS, since some forms of HS can run in families.
During a physical exam, your doctor will look for characteristic HS lesions. There are no tests for 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 it tends to be something that’s coming and going and waxing and waning over months and years.”
It can be difficult for people with HS to get a proper diagnosis. Research shows that the average time between the first appearance of HS symptoms and diagnosis is 10 years. Part of the problem is misdiagnosis.
“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 that 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 diagnoses 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.”
While bacteria cultures are important to rule out infection as a cause for lesions, Dr. Richmond stressed the importance of finding a health care provider with experience treating HS: “You have to see a physician who can really recognize these different conditions.”
Dr. Richmond frequently 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.”
Tetracycline antibiotics like minocycline and doxycycline are frequently used to treat HS due to their anti-inflammatory effects. Dr. Richmond also uses clindamycin and rifampicin, other antibiotics with anti-inflammatory properties known to be effective for treating HS. Topical clindamycin can also be used to treat HS lesions, but it’s not always effective, she said.
In cases of severe disease, Dr. Richmond said that intravenous ertapenem can be used to bring lesions under control.
Corticosteroids can reduce acute and chronic inflammation in HS. According to Dr. Richmond, oral steroids that treat the whole body can help with severely inflamed cases. She prefers using corticosteroids locally, though: “I do a lot more intralesional injection of steroid[s] into individual inflamed lesions. I find that to be very helpful.”
How hormones impact HS is poorly understood, but several hormonal therapies can help control symptoms. Some people experience worsening of HS symptoms, or flare-ups, that correlate with 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 counteract the effect of male sex hormones.
Biologics are a newer type of medication that use biological molecules — antibodies, for example — to treat HS. Dr. Richmond said that she regularly prescribes Humira (adalimumab).
Humira is the only biologic approved by the U.S. Food and Drug Administration to treat HS. However, Remicade (infliximab) and Stelara (ustekinumab) can be used off-label to treat HS. Dr. Richmond noted that other biologics are currently being used as new treatments for HS, including Kineret (anakinra) and Cosentyx (secukinumab).
Several other drugs and treatments are available for HS. Drugs commonly used for other conditions can help control HS symptoms. “People are now starting to use more Metformin, which has insulin effects, which may play a role in hidradenitis,” said Dr. Richmond. Metformin is typically used to treat type 2 diabetes.
She has also had success using a newer treatment for HS: “I’m starting to use topical resorcinol, which is a chemical peeling agent that you can use locally to certain affected areas.”
Several surgical procedures may be used to treat HS on or near the vulva. These surgeries include abscess incision and drainage, deroofing/unroofing (removing the skin over a lesion), and surgical excision (removal) of lesions in moderate to severe HS.
Dr. Richmond regularly performs outpatient surgical procedures for HS in her clinic, but she warned that surgery for HS is not always appropriate. 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’re moving around, however, “then 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. Relatively minor procedures like unroofing don’t result in very much scarring. But more extensive procedures, such as wide excisions, can be extremely complex with many potential complications.
Read more about groin surgery.
Medical treatment is an important part of managing HS, but there are many things you can do yourself, at home, to help care for your HS. For acute pain management, Dr. Richmond recommended warm compresses and nonsteroidal anti-inflammatory drugs like ibuprofen and naproxen (Advil and 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 who are obese are more likely to have HS and that 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 reiterated 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.”
Dr. Richmond knows that living with HS is not easy: “It’s painful. It’s really impactful to daily life, and there’s an embarrassing factor, so some people are hesitant to talk about it.” If you’re dealing with vulvar HS, take heart. “You’re not alone,” she said. “It’s a really common problem that I think people don’t talk about.”
On myHSteam, the social network for people with hidradenitis suppurativa and their loved ones, more than 23,500 members come together to ask questions, give advice, and share their stories with others who understand life with hidradenitis suppurativa.
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