Hidradenitis suppurativa (HS) is a skin condition that can be complicated, a bit mysterious, and sometimes difficult to predict. No one really knows what causes it, but hormones do play a role. HS usually shows up after puberty, and it’s common for symptoms to flare shortly before or during your period.¹

When someone with HS is pregnant, it can get even more complicated. For starters, being pregnant can affect the lumps, cysts, and fluid-filled nodules caused by the chronic condition. Plus, medication changes could be an issue too: If you need to stop a drug you’d been taking before you conceived, that might lead to a flare-up. 

“This is definitely a big topic, whether patients are already pregnant or actively planning for a family,” Jennifer L. Hsiao, MD, an associate professor of clinical dermatology at Keck Medicine of USC, in Los Angeles tells SELF.

Here’s what the experts we talked to said that you should know when you’re expecting—or at least think about before planning a pregnancy.

1. Your treatment may need a makeover—but check with your doctor.

If you are thinking about having a baby, it’s natural to worry that any drug, even one applied to the skin, might be harmful. Dr. Hsiao and her colleagues surveyed 59 women with HS who were between the ages of 18 and 40 and “about half believed that you must stop all HS medications during pregnancy, for safety reasons,” Dr. Hsiao says.²

While there are some treatments you may need to avoid, some of them are fine to continue using. What’s considered okay to use during pregnancy and breastfeeding? Dr. Hsiao says antimicrobial skin washes; certain antibiotics either applied to the skin or taken by mouth, such as clindamycin; oral zinc; and metformin, a type 2 diabetes drug that reduces inflammation and is sometimes prescribed for HS.

Others “absolutely should be avoided during pregnancy,” she says. These include oral retinoids like isotretinoin; spironolactone, an oral drug that blocks some of the effects of your body’s androgen hormones; methotrexate, an immune-suppressing drug; and tetracycline antibiotics, she says.

Your doctor should weigh in on what medications are safe for you to take, and can work with you before and during your pregnancy. “Everything is a discussion,” Dr. Hsiao says. “There has to be that two-way communication.”

Not all pregnancies are expected, of course. But if you’re actively trying (or not not trying), you should have this discussion with your doc. “As soon as you’re planning to conceive, you should talk to your HS provider about your treatment plan,” Vivian Shi, MD, an associate professor of dermatology at the University of Arkansas for Medical Sciences, in Little Rock, tells SELF.

2. Your HS symptoms might get worse during pregnancy…or better.

Some people find that their HS goes into overdrive during pregnancy, while others see no change—or it improves. “It’s a roll of the dice,” Brindley Brooks, founder of the nonprofit HSConnect, tells SELF. In other words, there’s no way to predict what your experience will be. However, both Dr. Hsiao and Dr. Shi have studied this to get a general sense of the odds.