Even though experts say it’s still a bit of a mystery, there are certain risk factors that may increase your chances of getting hidradenitis suppurativa, like your genetics. In fact, one in three people with H.S. has other family members with the condition. Researchers have identified a few gene mutations linked to hidradenitis suppurativa, including those on NSCTN, PSEN1, and PSENEN. All three of these genes code for proteins that are involved in healthy skin processes. (With that said, it’s also possible to have H.S. but not to have relatives with the condition—and you most likely won’t know whether any of your family members have one of the possible gene mutations.)
There is also a significant amount of evidence showing that smoking is a risk factor. Up to 90% of people with this condition are either current or former smokers4. And being a weight that’s medically classified as overweight or obese is also linked to an increased risk of having hidradenitis suppurativa. Fluctuating hormones are another possible cause, but experts are still researching the exact reasons why. What is clear, though, is that symptoms can flare before and during menstruation.
What hormones affect hidradenitis suppurativa?
Experts believe hormones play some role, but it’s not clear why you might have flares around your period. “We do need more research, but we know the link is there. Our patients tell us it’s there,” Oluwakemi Onajin5, M.D., assistant professor of medicine at University of Chicago Medicine, tells SELF.
There is no peer-reviewed, published wide-scale study specifically looking at hidradenitis suppurativa flares and menstrual cycles, but there have been several small ones throughout the years. Recently, Dr. Hsiao’s research team surveyed 279 people who menstruate with the condition. Nearly 77% of them said their symptoms got worse when they were on their period6. (The study doesn’t identify whether any of the people took birth control, which may affect hormone levels, depending on the type.)
One possible explanation is that levels of estrogen and progesterone, two key hormones in menstruation, dip in the time leading up to your period, possibly contributing to flares because higher estrogen and progesterone levels may help keep inflammation at bay, according to Dr. Hsiao.
“The other factor that speaks to hormones potentially being involved is that hidradenitis suppurativa can change during pregnancy, which is also a time of large hormonal shifts,” Dr. Hsiao says. When expecting, people make certain hormones only produced during pregnancy as well as higher levels of estrogen and progesterone.
Androgen hormones, such as testosterone, are another possible player here. Everyone has androgens, and people who menstruate may have varying amounts of them throughout their cycle. While it’s not clear what role androgens play in the condition and how these hormones may affect menstrual flares specifically, experts do know that anti-androgen medications seem to help prevent flares in some people, solidifying the idea that there’s at least a connection that needs to be explored further.
On top of the hormonal connection, people assigned female at birth with hidradenitis suppurativa typically get lesions on their vulva1, which may get irritated if they menstruate and use pads.
How to treat hidradenitis suppurativa flares during your period
There’s no cure for the condition, but there are various treatments and strategies to manage flares, Dr. Onajin says. “You really have to tailor the treatment,” he says, adding that your plan will also take into account the severity of your disease.