People living with hidradenitis suppurativa — a skin condition also called acne inversa — experience painful and chronic skin lesions that can often feel like a burden. Symptoms of HS include bumps, dark patches of skin, and tenderness and swelling, often in some of the most intimate areas of the body, including the armpits, the groin and genital area, around the buttocks, and under the breasts. Because of this, intimacy with a partner can be both painful and embarrassing.
To learn more about how people living with HS can experience intimacy and successfully communicate with their partners, myHSteam spoke with Erin Martinez-Gilliard, a licensed clinical social worker, certified sex therapist, and lecturer at the University of Michigan School of Social Work.
Challenges related to emotional well-being and the quality of sexual experiences are common concerns for people living with HS. People may have symptoms on their genitals or experience genital swelling, which can have an impact on sexual functioning, negatively affecting their body image and quality of life.
A recent study looked at the relationship between sexual desire and functioning and the general condition of people with HS. After surveying 77 individuals for one year, researchers found that participants often reported having sexual interest and desire despite problems with functioning due to HS. Another study compared the quality of life and sexual functioning of 50 participants with HS to 50 people without the condition. Men living with HS were found to have higher sexual dysfunction, and women with HS had more sexual distress than women without.
One myHSteam member shared their experience, “I’m having lots of flare-ups in my groin region and under my breasts. Really sucks for my mental health. It’s almost impossible to feel sexy or get in the mood when you’re having flare-ups in these areas, and you definitely don’t want to be touched.” Similarly, another member posted, “My HS has been OK lately, but I have been feeling really frustrated. I’m dying for physical contact. The one thing I want, I need, is the one thing I’m embarrassed to do.”
HS occurs more frequently in women than in men, however, men often experience greater disease severity. Martinez-Gilliard explained that it’s important to consider the impact of HS on different body parts. “When we think about intimacy, and how it can be experienced differently for individuals that identify as men, women, or nonbinary, we think about how it impacts specific parts of the body in different ways.”
A 2021 study found that men had more HS symptoms on the buttocks and perineal region than women, and women had more HS symptoms on their breasts and chest than men. About half the men and half the women in the study had symptoms affecting the groin and genitals.
“If we have anything that is impacting any part of our body, it’s going to change that experience in some way,” Martinez-Gilliard commented. “If you have a flare on one part of your labia, you may not have the same level of arousal because of the pain in your body.”
She added, “For individuals that have a penis, if they have a flare, they may not want to have any sort of contact because that could increase the pain. And so what we’re really thinking about when we get into ideas around intimacy is how to do things differently or how to focus on different areas when there’s a flare.”
Skin lesions and flare-ups can make connecting with your partner emotionally challenging. In fact, many studies have shown that people living with HS often experience problems related to mental health, including depression and anxiety.
“People often think of grief as something related to death, but grief is about something that you had at one time, and now it’s changed. Whenever you have a chronic health problem, but specifically with HS, it certainly changes how you will approach yourself and other people. The primary experiences I hear about are desire, pain, and changes or grief related to body image. They really inhibit people from being able to connect with themselves and others in their life, sexually,” said Martinez-Gilliard.
Understanding how life with HS can affect your sex life and mental health is the first step to managing the emotional and physical challenges related to intimacy. If you are experiencing self-esteem, body image, anxiety, or depression, speak with a professional who can help.
It is normal to feel nervous engaging in a sexual relationship because there is often stigma associated with skin diseases, especially when they affect the genitals. One member asked the myHSteam community, “Does everyone here address your HS before getting intimate with someone, if addressed at all?” Martinez-Gilliard recommends starting with the relationship and communication you have with yourself.
“Intimacy has to begin with your relationship with yourself. And that’s most important when you’re dealing with a chronic health issue,” she said. “You can try thinking about and leaning into sensory experiences, like what kind of touch or textures make you feel warm and excited.”
“We want to focus on places in the body that make us feel good. As soon as you open up the door to ‘I feel good about this,’ or ‘I enjoy being touched there,’ it sends a larger message to your whole body. It welcomes a sense of pleasure,” added Martinez-Gilliard.
It is also important to remember that your partner’s sexual experience and perception of your condition are not necessarily the same as your own.
“Sometimes, when we feel fearful, overwhelmed, or in pain about our experience, we imagine the other person is feeling the same way. But we need to leave space in our own minds and hearts for the fact that they experience it differently,” said Martinez-Gilliard. “I’ve heard from people who say, ‘I didn’t believe my partner,’ or ‘I can’t imagine they feel that way.’ And so, just leaving space for that, to be open for that, is a great starting place for communication with your partner.”
One myHSteam member shared, “Dating and being intimate with HS is definitely an issue. But it’s not an end or death; it only is an adjustment. Just like you believe that you wouldn’t discriminate against your partner for having this, there is someone out there for you that will accept you.”
It can be hard to communicate about your HS condition with an intimate partner. Martinez-Gilliard offered ways to reduce this sense of feeling overwhelmed.
“Don’t feel like you have to tell the entire story up front. Give some explanation of HS, and then see how they respond before you decide if you want to unpack more. Also, you can give them a heads-up about what you need before you talk about it. You could say something like, ‘I just need you to listen and don’t ask questions.’ If you tell them that before, it’s a much more useful conversation for them and for you,” said Martinez-Gilliard.
Explaining what you feel can help your partner better understand how HS affects your ability to be intimate, as well as how they can engage with you sexually.
Martinez-Gilliard said, “A really difficult part of HS is that it impacts your body during a flare in the most intimate of areas. So, letting a partner know how that may look and feel to you is really important. It’s very scary for most people because they fear rejection. I would suggest naming the pain and discomfort. I hear people often lead with what they think the partner will experience, which is what they’ll see, or maybe odor. What your partner actually needs to know is how you experience HS.”
She suggested telling your partner about what you feel when you have a flare-up and whether you want to be seen or touched at the time. One myHSteam member offered, “Talk to your partner. Mine has been really supportive.”
“I would also encourage you to pause and say to your partner, ‘What questions do you have? I’m happy to answer them.’ When we’re thinking about people we’re going to be intimate with, we really want to give them a good idea of what they need to know about our bodies that will help them be successful partners, which is a very different conversation than what most people are having,” Martinez-Gilliard said.
Martinez-Gilliard recommends looking to support groups where you can find others who have chronic diseases and similar experiences. She said, “I would highly recommend myHSteam as a safe place to check out, to see what you can share and learn.”
More than 27,000 members come together on myHSteam, the social network for people with hidradenitis suppurativa and their loved ones, to ask questions, give advice, and share their stories with others who understand life with HS.
Are you living with HS and finding it hard to communicate with your partner about intimacy? Share your experience in the comments below, or start a conversation by posting on your Activities page.