Hidradenitis suppurativa (HS) doesn’t just affect your skin. It can also affect how you feel about your body, your confidence, and your relationships.

HS can cause painful lumps in areas where skin rubs together, including the groin, buttocks, and under the breasts. Research shows HS can negatively affect sexual health, quality of life, and relationships.

To better understand how HS affects relationships, we looked at conversations among myHSteam members, including this question: “How has hidradenitis suppurativa affected your closest relationships?” Their stories show that while HS can create real barriers, many people also find ways to communicate, connect, and feel supported.

Here are five ways HS can affect intimacy and relationships — and what members say helps.

HS can affect confidence long before intimacy begins. Many myHSteam members said they worry about scars, drainage, odor, or having to explain HS to someone new.

One member shared, “I feel embarrassed, and I am very conscious about smells and any leaking. Not a good feeling!”

“I’m single. I’m terrified to date because of having to explain my HS — the draining, swelling, scar tissue.”

— A myHSteam member

For people who are single, that fear can make dating feel overwhelming. One myHSteam member wrote, “I’m single. I’m terrified to date because of having to explain my HS — the draining, swelling, scar tissue.”

Even in long-term relationships, HS can affect self-image. One member explained, “Most people have no idea. I will say in my marriage, it takes my self-confidence. Although he’s wonderful and says he doesn’t even see it, it’s still all I can think about.”

If HS is making you feel isolated, consider talking with a healthcare provider or counselor.

HS flare-ups can be very painful, and studies suggest that pain, odor, and lesions in intimate areas can all contribute to sexual distress. That’s one reason intimacy can feel physically difficult during a flare.

Regarding physical intimacy, one myHSteam member said, “I can’t when I have flare-ups, too painful.”

Another member described how flares can affect everyday movement: “Plus it’s uncomfortable to sit, stand, or walk when they flare. Life is miserable with them.”

Pain can also be unpredictable. Letting a partner know when you’re having a flare may help reduce pressure and make room for other kinds of closeness.

Many members describe changes in their sex lives as HS worsens or moves to new areas of the body. This is not unusual — research has found that sexual dysfunction and sexual distress are common among people living with HS.

One member reflected, “Has [HS] affected our sex life? Yes. But so has life in general. At 30, I would do it through the pain and consequences. Today, no.”

"I’ve been married over 30 years, and we had a great sex life until the last two years where it’s been nonexistent.”

— A myHSteam member

Another myHSteam member shared, “Mine is on my inner thighs into my bikini line on both legs and it is awful at times. Some days, I can’t even walk. I’ve been married over 30 years, and we had a great sex life until the last two years where it’s been nonexistent.”

These changes can feel frustrating, sad, or heartbreaking. Some people miss sexual intimacy but also know their body needs rest and care.

If sex has become painful or difficult, talk with your doctor. They may be able to help you manage symptoms that are affecting intimacy.

Many myHSteam members said open, honest communication can make a big difference. It can help partners understand that HS is not contagious and not caused by poor hygiene, and that symptoms may change from day to day.

“Thankfully, my husband is very understanding. I explained all that I could, and letting him know when I am having a flare-up definitely helps.”

— A myHSteam member

One member advised, “Just be open and straightforward. ‘I have a health condition, and you can’t catch it, but it could affect my moods occasionally and our sex life!’”

Another member shared, “Thankfully, my husband is very understanding. I explained all that I could, and letting him know when I am having a flare-up definitely helps.”

You might start by saying that you have a chronic skin condition that can cause painful bumps, drainage, scars, and flares. You can also explain that HS is not caused by being unclean and is not something a partner can catch.

Despite the challenges, many members emphasized that understanding partners are out there.

One myHSteam member shared the following about their partner: “He’s seen me at my worst with flare-ups and drainage and hasn’t once told me that I was disgusting or anything along those lines. He’s held me as I’ve cried while in pain.”

“My boyfriend doesn’t mind or care either. He’s even helped with bandaging.”

— A myHSteam member

Another member said, “My boyfriend doesn’t mind or care either. He’s even helped with bandaging.”

These stories don’t erase the hard parts of HS. But they do show that meaningful connection is possible.

One member offered this encouragement: “If you are with the right person then they won’t care, they will appreciate your honesty and openness and will want to understand and support you.”

Finding What Works for You

HS affects everyone differently. Some people choose to date and talk openly about their condition. Others take a step back from dating or sex to focus on their health and well-being.

There’s no single “right” approach. What matters is finding what feels safe, respectful, and supportive for you.

If HS is affecting your relationships, sex life, or mental health, consider talking with your healthcare provider.