Hidradenitis Suppurativa in Women

Women are more likely to have hidradenitis suppurativa (HS), an inflammatory skin condition. Experts aren’t sure why. But your immune system, environment, and lifestyle likely all play a role.

“And, of course, there’s a hormonal factor,” says Jennifer Hsiao, MD, a dermatologist and assistant clinical professor at UCLA. “Women with HS definitely have unique challenges surrounding events like menstruation, pregnancy, and menopause.”

Here are some things to keep in mind.

Most of the time, Hsiao says, people tell her their menstrual flares happen the week right before their period starts. That’s when there’s a drop in estrogen and progesterone. Studies show anywhere from 43% to 77% of menstruating people with HS have premenstrual flares. But it’s unclear if that drop is what triggers it.

There are lots of unanswered questions. But if premenstrual flares happen to you, there’s more than one way to manage your HS symptoms.

“Since there is a hormonal drive to menstrual HS flares, you can’t expect to just treat that with an antibiotic or an immunomodulating or immunosuppressing medication,” Hsiao says. “You really need to target the root cause.”

A combined oral birth control is helpful for some people. Commonly, your doctor may want you to try a pill with high estrogen and an anti-androgenic progestin.

“Everyone has androgens. Those include ‘male’ hormones like testosterone,” Hsiao says. “Currently, we think blocking these androgens may be helpful at preventing premenstrual HS flares.”

Spironolactone is another choice. That’s a medication with anti-androgen activity that’s actually a common blood pressure drug. You can take it along with an oral birth control pill or by itself.

If you get lesions in your groin, menstrual pads may be uncomfortable. If that’s the case, Hsiao says, consider tampons. 

It’s hard to predict how you’ll feel. Studies show about 1 in 4 people with HS may see symptom improvement. Experts think some people may feel better because of the changes in estrogen and progesterone levels that come with pregnancy.

But most people have unchanged or worse disease activity during pregnancy. But if you have active HS, you can and should get treatment for your pain and inflammation.

“Women should not feel like they have to suffer with severe HS during their pregnancy because they’re afraid to take anything,” Hsiao says.

It should be noted that certain meds are off the table for pregnant people with HS. That includes tetracycline antibiotics and oral retinoids, Hsiao says. Along with spironolactone and, of course, hormonal birth control.

Whether you’re pregnant or breastfeeding, your doctor may manage flares with therapies including:

• Topical antibiotics and washes
• Non-tetracycline antibiotics
• Metformin
• Biologic drugs
• Steroid shots into active HS lesions

It’s best to hold off on major surgeries during pregnancy, Hsiao says, but certain smaller procedures may be OK. You’ll need to talk to your doctor about what’s safe for you.

Here are some other things to consider around pregnancy:

Weight gain. It’s healthy to add some pounds during pregnancy. Watch out for extra rubbing or friction in certain areas.

You may have HS in or around your breasts, groin, or vulva. Certain procedures, such as mammograms and Pap smears, may be unpleasant. It’s normal to want to put off these tests if you have a flare. But there are ways to make your doctor visits “as painless as possible,” Hsiao says.

First, tell your health care provider about what’s going on. They may want to treat your active lesions first. But you shouldn’t delay certain health screenings. Your doctor can talk to you about ways to minimize pain before those procedures.

And if you need a Pap smear or pelvic exam, your doctor can make that easier, too. You may feel better if they use:

• A topical numbing agent
• A small, narrow speculum
• Lots of lubricant

Experts used to think HS would get a lot better for people after they stopped menstruating. But studies show that’s not the case. In fact, most people have no change or a worsening of symptoms during menopause.

Hsiao sees people in their 50s and 60s who have severe disease. And she urges everyone with active HS to continue to see their doctor and keep up with their treatments, no matter their age.

 “At this time, we can say that HS is a chronic disease, and the earlier we treat, the better,” Hsiao says. “I would not recommend that [people] wait to see if the disease will burn out on its own.” 

You may be embarrassed about your symptoms. But it’s important that you feel safe with your intimate partners. Give your sexual health a boost by talking openly and honestly about your HS. If you’re not sure how to do that, ask a mental health professional for support.

A therapist can teach you how to “make it really clear that these lesions are not contagious,” Hsiao says. “They’re not an STD. It’s an inflammatory disease.”

If lesions cause pain during sex, condoms and lube may help ease some of the friction. But the best way to feel better is to find a good long-term treatment to manage your disease.

“The goal is to minimize the number, severity, and duration of flares,” Hsiao says. “So [people with HS] can live life and have intimate relationships the way that they want to.”