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Diagnosing and Treating Vulvar Hidradenitis Suppurativa

Posted on March 03, 2022
Medically reviewed by
Heather Richmond, M.D.
Article written by
Kristopher Bunting, M.D.

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.

What Is Vulvar HS?

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:

  • Blackheads (comedones)
  • Tender or painful bumps or lumps (nodules) 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, 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.

How Is Vulvar HS Diagnosed?

Diagnosis of HS involves a thorough medical history and physical exam. Diagnosis may also include laboratory tests to rule out other conditions.

Medical History and Physical Exam

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.”

Tests to rule out other conditions can include bacterial cultures or skin biopsies. Bacterial cultures can reveal different infections, and a skin biopsy could point to genital Crohn’s disease.

Misdiagnosis

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.”

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 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

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.”

Hormonal Therapies

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

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).

Other Treatment Options

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.”

Surgery

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.

How Can You Manage Your HS at Home?

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.”

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 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.”

Talk With Others Who Understand

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.

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.

References
  1. Hidradenitis Suppurativa: Symptoms and Causes — Mayo Clinic
  2. Anatomy of the Vulva — University of Rochester Medical Center
  3. Hidradenitis Suppurativa: A Common and Burdensome, Yet Under-Recognised, Inflammatory Skin Disease — Postgraduate Medical Journal
  4. Board Certified Dermatologist – Heather Richmond, MD — Dermatology & Laser Surgery Center
  5. Psychosocial Impact of Hidradenitis Suppurativa: A Qualitative Study — Acta Dermato-Venereologica
  6. Hidradenitis Suppurativa and Intimacy — International Journal of Women’s Dermatology
  7. High Prevalence of Hidradenitis Suppurativa in Patients With Perianal Fistula — International Journal of Colorectal Disease
  8. Perianal Crohn’s Disease and Hidradenitis Suppurativa: A Possible Common Immunological Scenario — Clinical and Molecular Allergy
  9. Genital Crohn Disease — DermNet NZ
  10. Vulvar Hidradenitis Suppurativa: Clinical Cross-Sectional Study of 25 Patients — The Journal of Dermatology
  11. Hidradenitis Suppurativa — Genetic and Rare Diseases Information Center
  12. Bacteria Culture Test — MedlinePlus
  13. Skin Biopsy: About — Mayo Clinic
  14. Delayed Diagnosis of Hidradenitis Suppurativa and Its Effect on Patients and Healthcare System — Dermatology
  15. Tetracyclines — DermNet NZ
  16. Anti-Inflammatory and Immunomodulatory Effects of Antibiotics and Their Use in Dermatology — Indian Journal of Dermatology
  17. Combination Therapy With Clindamycin and Rifampicin for Hidradenitis Suppurativa: A Series of 116 Consecutive Patients — Dermatology
  18. Efficacy of Ertapenem in Severe Hidradenitis Suppurativa: A Pilot Study in a Cohort of 30 Consecutive Patients — Journal of Antimicrobial Chemotherapy
  19. Intralesional Corticosteroid Injection for the Treatment of Hidradenitis Suppurativa: A Multicenter Retrospective Clinical Study — Journal of Dermatological Treatment
  20. Hormonal Therapies for Hidradenitis Suppurativa: Review — Dermatology Online Journal
  21. The Role of Oral Contraceptive Pills in Hidradenitis Suppurativa: A Cohort Study — Life
  22. Biologics for Hidradenitis Suppurativa: An Update — Immunotherapy
  23. Topical 15% Resorcinol Is Associated With High Treatment Satisfaction in Patients With Mild to Moderate Hidradenitis Suppurativa — Dermatology
  24. Deroofing: A Tissue-Saving Surgical Technique for the Treatment of Mild to Moderate Hidradenitis Suppurativa Lesions — Journal of the American Academy of Dermatology
  25. A Review of Wide Surgical Excision of Hidradenitis Suppurativa — BMC Dermatology
  26. Wide Excision and Healing by Secondary Intent for the Surgical Treatment of Hidradenitis Suppurativa: A Single-Center Experience — Journal of Plastic, Reconstructive, and Aesthetic Surgery
  27. Plastic Surgical Management of Hidradenitis Suppurativa — Plastic and Reconstructive Surgery
  28. How Being Desperate for Relief From Hidradenitis Suppurativa Ruined My Womanhood (Part 1) — HSDisease.com
  29. Patient Satisfaction and Quality of Life Following Surgery for Hidradenitis Suppurativa — Dermatologic Surgery
  30. The Influence of Body Weight on the Prevalence and Severity of Hidradenitis Suppurativa — Acta Dermato-Venereologica
All updates must be accompanied by text or a picture.
Heather Richmond, M.D. is board-certified by the American Board of Dermatology and is a fellow of the American Academy of Dermatology. Learn more about her here.
Kristopher Bunting, M.D. studied chemistry and life sciences at the U.S. Military Academy, West Point, and received his doctor of medicine degree from Tulane University. Learn more about him here.

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