Hidradenitis suppurativa (HS), or acne inversa, is a chronic skin condition characterized by painful swollen lesions that develop in the armpits, groin, and anal area, and under the breasts. At least 1 percent of the global population lives with HS.
To learn more about hidradenitis suppurativa, myHSteam spoke with Dr. Alexa Kimball, a professor of dermatology at Harvard Medical School. Dr. Kimball is also the CEO and president of Harvard Medical Faculty Physicians at Beth Israel Deaconess Medical Center in Boston, Massachusetts.
“Flares are a really common problem for patients,” Dr. Kimball said. “[Symptoms] range from one nodule or area that is red and inflamed in a place that is just incredibly problematic, to people who are having multiple nodules in multiple places.”
Women are far more likely than men to develop hidradenitis suppurativa. While more than half of people with HS are white, the condition disproportionately impacts African American women.
Some studies suggest a link between hidradenitis suppurativa flare-ups and sex hormones, like estrogen and progesterone. Puberty, the menstrual cycle, menopause, and pregnancy are major life stages involving hormonal changes during which HS flare-ups are common.
Hidradenitis suppurativa can develop in people of any age, but most often develops after puberty. HS is rarely found in children under the age of 11 and, in those cases, there is often a hormonal imbalance or family history of the skin disease. On the opposite end of the spectrum, the condition rarely first develops past age 40.
Because of hormone fluctuations, some women experience HS symptom flare-ups around their menstrual cycle. The flare-ups seem to be caused by decreasing levels of estrogen and progesterone. In a survey of 279 women with HS, nearly 77 percent reported worsening HS symptoms around menses.
Many myHSteam members experience flares during their menstrual cycle:
How a person experiences HS during and after pregnancy varies greatly. “Unfortunately, we can’t really predict,” Dr. Kimball explained. “Some people get better, some people get worse, and some people don't change.” The postpartum period can also be problematic, Dr. Kimball noted, due to hormonal fluctuations.
A retrospective cohort study at Henry Ford Health System in Detroit backs up Dr. Kimball’s observations. About 30 percent of pregnant women experienced no changes in their HS symptoms during pregnancy. For 62 percent of participants, symptoms worsened, while symptoms improved in 8 percent of pregnancies.
For some women, symptoms of hidradenitis suppurativa may change during menopause. In the survey of 279 women with HS, just over 44 percent reported no change in symptoms after menopause. However, nearly 40 percent reported worsening symptoms.
Some myHSteam members report relief when entering menopause. One member wrote, “Since I am going through a medication-induced menopause, I have noticed less flare-ups.”
Other members see their symptoms continue or worsen. One myHSteam member shared, “I had a radical hysterectomy where everything was removed when I was 40, and I still have bad flare-ups regularly. I am now 62!”
Your doctor may recommend hormone therapy as a potential treatment option because of the link between hormones and HS symptom flare-ups. Hormone therapy may help decrease the pain and amount of fluid drainage from lesions during a flare-up.
Dr. Kimball believes hormonal therapy can be a good treatment option for HS, but it is often underutilized. “Hormonal therapy, for women with mild to moderate hidradenitis suppurativa, offers hormonal rebalancing,” she said.
However, some commonly used hormonal contraception methods — including progesterone-only options — can flare disease. Dr. Kimball stressed the importance of gynecologists and dermatologists collaborating to find the best treatment options for individuals with HS. Information gleaned from annual gynecological check-ups ensures a dermatologist has the necessary data to discuss the best hormonal treatment options.
Oral contraceptives can lessen hidradenitis suppurativa symptoms in some women. “Oral contraceptives … can bring people really nice improvements that can sometimes be managed with very low medication doses for a long period of time,” Dr. Kimball said.
One myHSteam member said, “My doctor and I decided to try low-dose estrogen, and it has really worked wonders. I start taking it when I'm premenstrual, and it zaps whatever flare-up was thinking about happening.”
“How people have used oral contraceptives in dermatology practice has changed a lot,” Dr. Kimball explained. “It used to be that many dermatologists didn't feel comfortable using them. And that's completely changed.”
Before prescribing birth control pills to treat HS, Dr. Kimball takes a medical history to understand any risk factors. “If I have a patient for whom I think that an oral contraceptive is appropriate, I'll ask them important questions. Have you had a stroke? Do you have clotting disorders in your family? Have you had migraines? Are you a smoker? How old are you?”
Using contraceptives to treat HS involves coordination with gynecological care, Dr. Kimball explained. “I'm very comfortable using contraceptives therapeutically as long as I feel like we've got the basics covered, and there is someone monitoring their gynecologic care,” she said. She encourages women with HS to have a collaborative conversation with their dermatologist and gynecologist to explore hormonal contraceptives.
Aldactone (Spironolactone) is a prescription drug approved by the U.S. Food and Drug Administration (FDA) to treat hypertension, heart failure, and edema, which is sometimes prescribed off-label to treat hidradenitis suppurativa in women. A small study of women with HS found treatment with Aldactone reduced inflammation and pain.
Finasteride, sold under the brand names Propecia and Proscar, is an antiandrogen drug (also called a “testosterone blocker”) used to treat conditions like male pattern baldness. It can also be used to treat hidradenitis suppurativa. A small meta-analysis found the drug provided symptom relief when taken alone or in conjunction with other therapy. Finasteride was effective for men, women, and adolescent girls — with few side effects.
Metformin is an oral medication used to treat type 2 diabetes, which is also useful in treating symptoms of hidradenitis suppurativa. In a small study published in the Journal of Dermatological Treatment, Metformin was well-tolerated, and participants saw some improvement in symptoms. Metformin may be a promising treatment option for individuals living with HS, especially for those living with comorbidities like diabetes.
Some myHSteam members have found Metformin beneficial: “I've been on Metformin for years, as it helps with hormones.”
HS can be a challenging condition, but members of myHSteam support each other through their difficult moments. One member wrote, “I don't really have anybody to talk to about this when I get flare-ups.” Another member commented, “I joined this [group] because I needed a place to talk about my emotions.”
Members of myHSteam also share their triumphs with each other. “I haven't felt this good in a long time — no flare-ups or breakouts,” one member wrote. “I'm gaining weight back. I'm happy — haven't been that in years. I feel sexy. I'm feeling myself!!!”
Do hormonal changes impact your HS? Share your experiences in the comments below or on myHSteam.