Getting diagnosed with hidradenitis suppurativa can bring up a lot of questions. Living with HS means facing new challenges, and it’s natural to want answers.

Below, we’ve gathered some of the most common questions myHSteam members ask. We hope these answers help improve your quality of life and well-being so you can thrive.

1. Can People With HS Work Full-Time Jobs?

Hidradenitis suppurativa, also called acne inversa, affects everyone differently. Some people are able to work full time with this inflammatory skin condition. One member shared, “I work 40-50 hours a week. I’m a sandblaster/industrial painter.” Another said, “I’ve had HS for over 40 years … I couldn’t afford time off work, so I used to bandage with lots of gauze. Padding helps with the pain.”

One recent study found that just over half of people with HS worked full time. However, people with HS tended to take more time off and may be less productive at work compared to those without the condition. Keep in mind, this study was done in Germany, where work conditions may be different from those in the U.S.

Some members do find working with HS difficult. One member said, “My HS has been challenging. I might have taken about five days off work in 40 years, or I have gone to work walking funny and blamed it on a bad knee.”

Since the severity of HS varies from person to person, it can be especially hard for those with severe symptoms. If needed, you can request workplace accommodations, like padded chairs, standing desks, or looser uniforms to avoid worsening hidradenitis suppurativa symptoms. For those unable to work full time, disability benefits or flexible hours may be an option. If surgery is recommended, people with HS can choose to have it and return to work once they’ve recovered.

It’s important to note that doctors don’t decide if someone qualifies for disability benefits. A healthcare provider can share information about your condition and treatment, but a third party reviews this information to make the final decision.

2. How Does Menopause Affect HS?

Menopause can affect HS differently for each person. In one small study of 43 postmenopausal people with HS, nearly 40 percent said their HS symptoms got worse after menopause. Another 44 percent said their symptoms stayed the same. Another study found that 48 percent of participants saw their HS symptoms improve after menopause.

This matches what myHSteam members have shared. One member said, “My mom has HS, and her symptoms disappeared after menopause.” Another shared, “I went through menopause at 40 and still have HS flares.” Others said, “My HS flares worsened after menopause,” and, “Since menopause, my HS symptoms have been different.”

More research is needed to understand how menopause affects HS. Hormone changes during perimenopause may play a role, but it’s hard to predict exactly how HS will respond.

3. Is There a Connection Between HS and Body Weight?

Body weight can impact HS. Having a body mass index (BMI) score over 30 is a risk factor for developing HS in both adults and children. About 1 percent of people in the U.S. have HS, but one small study found that 18 percent of people with obesity also had HS. This means HS is more common in people with obesity than in the general population.

Losing weight or reaching a healthy weight may help reduce HS symptoms. In some cases, it can even put the condition into remission. However, losing weight can be harder for people with HS.

“I can’t lose much weight because of the medication I take to stop HS,” one myHSteam member said. “In fact, it causes me to GAIN weight,” they said.

If you’re interested in losing weight, talk to your doctor about lifestyle changes or medical interventions that might help.

4. How Do You Get Diagnosed With HS?

To get diagnosed with HS, it’s important to see a dermatologist — a doctor who specializes in skin conditions. It’s even better to find someone who knows about HS, although that can be hard to find. Seeing a specialist can help avoid the seven to 10 year delay many people face in getting diagnosed.

One myHSteam member shared, “I’ve had HS since I was a child, but I wasn’t diagnosed for 45 years.” Another replied, “After 10 years of seeing doctors and being fed antibiotics, I finally saw a doctor who actually identified and diagnosed my HS.”

Once you find a healthcare provider, they’ll ask about your symptoms and the affected areas. They may also ask about your family history and examine any active HS areas. Sometimes, they’ll take a sample of fluid from HS lesions to check for infection. In some cases, they might use an ultrasound to look under your skin.

Your doctor will use all this information to diagnose HS. That’s why it’s so important to see a dermatologist for the right advice.

5. What’s the Best Diet for HS?

Some people try to manage hidradenitis suppurativa symptoms like abscesses, cysts, and tunnels by changing their diet. Research on diets for HS is still new, and there’s no single eating plan that dermatologists recommend. However, some eating plans might help, including:

• Mediterranean diet — Focusing on seafood, beans, fresh fruits and vegetables, whole grains, and extra-virgin olive oil
• Sugar-free diet — Cutting back on sugar to reduce HS flare-ups
• Plant-based diet — Eating mostly plants or foods made from plants instead of meat and animal products
• Dairy-free diet — Avoiding milk, cheese, and other dairy products

It may also help to figure out if you have food sensitivities. This can take some trial and error, but it’s worth it if it improves your symptoms of HS.

Some people find that diet makes a big difference. One myHSteam member shared, “I have had HS for over 40 years. I can control it by diet. It’s been about a month now with no HS activity.” Remember, though, that this won’t work for everyone. Another member explained, “I’ve tried every diet, different foods, and more, and have very few good outcomes.”

6. What Treatments Do You Use for HS?

There are many treatment options for hidradenitis suppurativa. Your treatment plan might include medications, lifestyle changes, or even surgery. While it’s helpful to hear what works for others, the best step is to talk to your doctor — preferably a dermatologist — for medical advice.

HS affects everyone differently, so the right way to treat hidradenitis suppurativa depends on a number of factors, such as the areas of the body where you experience symptoms of hidradenitis suppurativa, how severe they are, and how you respond to specific medications.

“Biologics have been a miracle for me,” one myHSteam member wrote. Another said, “Cold packs help me so much during flare-ups. Feels so much better.”

It’s great to get ideas from others, but always discuss them with your doctor or dermatology specialist. They can also recommend the best dressings and bandages for HS wound care.

7. How Do You Deal With Odor From HS?

The pus from HS sores can sometimes have a strong odor. This might make you want to avoid others. One myHSteam member said, “It is very painful, and the odor is bad, which causes me to isolate.”

To feel more comfortable around others, you can try different ways to manage the odor. Some members shared:

• “I use witch hazel for the odor.”
• “Regular bleach baths help.”
• “I use Hibiclens all over. That makes the odor go away.”

Some experts recommend using vinegar on a washcloth and applying it to open wounds before dressing them.

Finding what works for you may take time, but there are many options to try until you find the best one.

Talk With Others Who Understand

At myHSteam, you’ll find the social network for people with hidradenitis suppurativa and their loved ones. On myHSteam, more than 46,000 members come together to ask questions, give advice, and share their stories with others who understand life with hidradenitis suppurativa.

Is there anything you wish people knew about hidradenitis suppurativa? What do you tell others when they ask about it? Share your experience in the comments below, or start a conversation by posting on your Activities page.