If you’re living with hidradenitis suppurativa (HS), you know that lesions can appear anywhere on the body where there are sweat glands. For some people, that means developing cysts in the perianal area, or the region between your buttocks and around the anus.
“Just underwent surgical excision of a perianal abscess,” wrote one myHSteam member. Another said, “My groin and anal HS make me feel distant from my wife.”
Perianal HS can impact your activities, your self-esteem, and your quality of life. Read on for more information about this condition and how you can manage it.
HS is a chronic skin condition that causes painful lumps in the skin. It’s sometimes known as acne inversa. This skin disease can affect any part of the body with apocrine sweat glands, which are sweat glands connected to hair follicles. This is why HS cysts are most common in areas with many hair follicles, like the scalp, armpits, and groin.
Because apocrine glands are often found between the buttocks and in the area around the anus (the perianal region), perianal HS can impact the skin in this area.
HS of any kind is more common in women, but perianal HS is more common in men than women, according to research published in the journal Clinics in Colon and Rectal Surgery.
Researchers have found that people with perianal fistulas and Crohn’s disease have a higher risk of developing HS than others. In fact, individuals with Crohn’s disease could be up to nine times more likely to develop HS than people in the general population. Crohn’s disease is a type of inflammatory bowel disease that causes inflammation of the digestive tract. It is considered to be a risk factor for developing HS.
HS usually develops where skin touches skin. HS lesions usually look like a pimple, boil, or abscess. They can feel like a deep lump in the skin that is tender to the touch. You may notice that HS lesions go away on their own, but it’s very common to develop a breakout in the same spot where an abscess has healed.
People with perianal HS will often have such symptoms as:
Diagnosing HS can be difficult since the symptoms are similar to those of other conditions. Getting a diagnosis of perianal HS usually involves seeing a specialist, typically a dermatologist.
As the disease progresses, more skin changes take place that distinguish HS from other conditions.
HS lesions are recurrent, meaning that they commonly form in the same place. When the lesions come back in the same spot over and over again, it leads to the development of sinus tracts and scarring. Sinus tracts are tunnels that form under the skin. In some people, the scarring and sinus tracts can be severe enough to restrict movement.
The Hurley system was developed to easily identify the severity of HS. Hurley stage designations include:
Treating perianal HS depends on the severity of symptoms. Early diagnosis and treatment are important to prevent long-term complications. Treatment may involve applying medication to the affected area (topical treatment) or taking medications by mouth to work all over the body (systemic treatment).
Many topical HS treatments that are frequently used on other parts of the body should not be used on the sensitive perianal region. Ask your doctor which treatments are safe. Surgery may be the best solution for perianal HS if lesions frequently recur.
Antibiotics are usually the first treatment prescribed for HS. Antibiotics like clindamycin or doxycycline, with or without rifampin (Rifadin), kill the bacteria that cause infections in abscesses.
You usually need to take antibiotics for long periods of time — up to three months — for symptoms to disappear. Long-term antibiotic use may put you at risk for serious side effects, like a Clostridioides difficile (formerly known as Clostridium difficile) infection and antibiotic resistance. It’s important to stay in close touch with your doctor if you are on a long-term course of antibiotics.
Retinoids are related to vitamin A and can be used to treat many different inflammatory skin disorders. Oral retinoids, like isotretinoin (Accutane) or acitretin (Soriatane), might improve symptoms of HS. However, they are not approved by the U.S. Food and Drug Administration (FDA) to treat HS. Some dermatologists use them off-label on a case-by-case basis.
Retinoids can cause side effects like dry skin, back pain, and depression. Additionally, retinoids can cause birth defects, so people who can get pregnant should be closely monitored when taking these drugs.
Medications that affect hormones may help improve symptoms of HS. Most hormone therapies are targeted at women, including oral contraceptives and spironolactone (Aldactone). A few small studies have found that finasteride (Proscar) may reduce HS symptoms for both men and women.
Corticosteroids can be injected into lesions to temporarily improve inflammation and pain. Although this can help manage HS and keep symptoms at bay, corticosteroid injections do not permanently cure HS.
Biologic medications, like anti-tumor necrosis factor (anti-TNF) drugs, can both manage HS long-term and improve quality of life. Anti-TNF medications work by preventing inflammation.
Adalimumab (Humira) is approved by the FDA to treat moderate to severe HS. Infliximab (Remicade) is also commonly used to treat HS, but it is not FDA-approved yet for HS. Some physicians choose to use it as an off-label treatment for HS.
Anti-TNF medications can cause serious side effects, including severe infections and an increased risk of certain cancers. Close monitoring is necessary if you’re on these medications.
Surgical removal of lesions is considered a final and definitive treatment for HS. It is only considered for people with stage 2 or stage 3 HS.
Surgery in the perianal region can be more difficult than in other parts of the body because the surgeon must also consider how to maintain control of the bowels. Some dermatologists may recommend incision and drainage to temporarily relieve pain caused by an abscess. However, most abscesses return after this procedure.
Deroofing is a surgical procedure that involves removing the skin covering a sinus tract and leaving it open to heal on its own. Wide surgical excision can lead to a cure for perianal HS, but it may require skin grafts and a longer healing time.
Making a few lifestyle changes can help you better manage your HS symptoms — and maximize treatment effectiveness. To get the best results from your treatment, try to:
Talk to your dermatologist about how often you should be screened for common complications of perianal HS.
Squamous cell carcinoma (SCC) is a type of skin cancer that can be a rare complication of HS.
People with HS who develop SCC usually get it more than 20 years after developing HS symptoms. It is important to talk to your doctor about getting screened for SCC if you have HS.
People with HS may experience chronic pain, decreased quality of life, and problems with sexual health. This puts them at an increased risk of depression. Talk to your health care provider about treatment options for depression and anxiety if you are experiencing any mental health symptoms.
On myHSteam, the social network for people with hidradenitis suppurativa and their loved ones, more than 27,000 members come together to ask questions, give advice, and share their stories with others who understand life with hidradenitis suppurativa.
Are you living with perianal hidradenitis suppurativa? Share your experience in the comments below, or start a conversation by posting on your Activities page.