Your guide to having a happy sex life with skin condition hidradenitis suppurativa, including how to handle embarrassment, telling your partner, and strategies for sexual dysfunction.
Doctors haven’t pinpointed exactly what causes hidradenitis suppurativa (HS), the chronic acne-like skin condition characterized by painful bumps under the skin that is estimated to impact between one and four percent of the population, according to the U.S. National Library of Medicine. However, we do know it’s more likely to occur in women than it is in men. We also know that it shows up in areas on the body where skin is likely to rub together, including around the breasts, underarms, buttocks, and genitals. Because of this, it can often have a profound impact on the sex lives of patients who deal with it. One study in The Journal of Clinical Medicine reported that on a scale of one to 10, on average, women rated the impact this condition has on their intimacy as a seven while men rated it a six.
When you take into account that outbreaks of HS can not only be painful but that the lesions they cause can also leak fluid that may have an unpleasant odor, it begins to make sense how having this condition could potentially affect one’s sex life. Additionally, given the lack of awareness about HS and that the appearance of a flare-up can often be mistaken for an STI, there’s frequently stigma attached, which makes it that much harder for people to talk about. Many of the lesions caused by the condition also produce scars, so its impacts remain visible beyond the time period of an active flare-up. Experts believe these stressors and their impact on a patient’s psyche contribute to the high level of sexual dysfunction in HS sufferers — around 51 percent in women, according to a 2019 study in the journal Dermatology.
But many sex therapists believe that with some personal, emotional work, along with open communication with a caring partner, and strategies to help head off discomfort, you can have a richer, more satisfying sex life with HS. Let them show you the way.
Explore on Your Own
Working toward a more positive, healthy relationship with your body is one of the primary pieces of advice for patients seeking to improve their sex lives, including those with HS. “In sex therapy we address this by encouraging our clients to explore their bodies and get to know their sexual selves,” explains Ursula Ofman, a clinical psychologist and sex therapist based in New York City. This means taking the time to masturbate and be intimate with yourself so that you can figure out exactly where and how you like to be touched, as well as what doesn’t work for you, all while spending time thinking about your body in a positive way. What you discover on your own can make a world of difference in how you approach partnered sex.
“Sexual confidence, knowing your body, and understanding what kind of stimulation you enjoy allows a person to focus on your own sexiness rather than some cosmetic imperfection,” explains Ofman. The more confident you become, the more likely it is that HS will begin to feel like just another aspect of who you are, rather than something that defines you.
Holly Richmond, a somatic psychologist, licensed marriage and family therapist, and certified sex therapist based in New York City agrees, explaining that the knowledge gained from self-exploration with touch, in general, can often be the key to upping libido and tackling sexual dysfunction. “Being comfortable with our bodies and knowing what turns us on is the key to great sex,” she says. “When people understand their individual requirements for desire… they have more access to pleasure and connection.”
Consider Strategic Lingerie
First, a reminder to all people with HS that the condition is nothing to be ashamed of, and many people who have it feel perfectly confident in their skin. For others who sometimes feel self-conscious about visible flare-ups or scarring, there’s a strategy that can help: don’t be afraid to call on pretty nightwear to keep them under wraps, says Richmond.
For example, if lesions on your torso are a concern, wearing a camisole can make you feel more confident, which may make you feel more in the mood. Not a lingerie person? The old standby trick of dimming the lights works, too.
Make Sex About Teamwork
Once you’ve explored to figure out some of the things that turn you on, as well as your boundaries, you can talk about those things with your partner as soon as you feel ready. When you do, Richmond says you can say things like “Please be gentle there, I’m hypersensitive” — then let them know the areas they have a green light to go for. “I think all good sex needs to start with where I like to be touched, where I don’t like to be touched, what feels great for me, what doesn’t feel so great,” she says.
And take note that this will be an ongoing conversation versus a one-time thing, as consent can be revoked at any time, you and your partner may decide you want to try new things, or you may find that you don’t like something you previously did.
If stress starts to creep in during the throes of passion (or lack thereof), try slowing things down, taking the focus off intercourse, and go back to the kinds of touch and areas you know you feel good at that time. For example, if your breasts are sore due to a flare-up and you know you like neck play, ask for your partner to try kissing you there for a while. This gives way to the opportunity, as Richmond says, “to try to bypass the anxiety or depression in your head [when] you just can’t quite get your body going to the arousal.”
Set the Right Tone With a New Partner
Yes, open communication is a cornerstone of any healthy, established relationship, but bringing up a topic you feel self-conscious about with someone you just started dating can be tricky. “Discussing it too early may make it appear as too much of a big deal; too late may be seen as misleading,” says Ofman. In other words, you don’t have to bring it up on the first date, but you may also want to do it before the first time you’re intimate. That way, everything is out on the table and you don’t feel forced to explain something you may feel self-conscious about in an already-vulnerable moment.
When you are ready to open up, Richmond advises having the conversation about HS in person — and not during a makeout session or via text. Pick a private place to sit down, and make eye contact. “It fosters empathy,” she explains.
Richmond suggests starting with the fact that you have a skin condition that’s not contagious to ease any concerns up front. From there, she says you can cover anything you feel comfortable disclosing within your personal boundaries. A few topics you might want to consider: “The facts about it, how it presented for you, how long you’ve had it, what your treatment plan is, and how it is impacting your life,” she says. Then give them the floor. “Say, ‘Are there any questions you have?’ That can keep them out of a position of defensiveness,” she insists.
And if their reaction isn’t what you had hoped for? Give them a little space to process, and give yourself some space, as well. “If it’s a deal-breaker, you dodged a bullet; you don’t want to be in a relationship with a really uncompassionate person anyway,” says Richmond. While an insensitive remark — or even a flat-out rejection — from one person can hurt, try to remember that not everyone will react this way. Even if you need some time, don’t let this be a reason to forego intimacy altogether.
Isolation can be intense when you’re dealing with a condition that’s not frequently talked about or even well-known. That’s why Ofman suggests finding patients in the same boat via virtual support groups, which, she says, “can help normalize one’s experience.” Having a sounding board can help relieve your worries — plus, hearing how others have successfully managed their intimate lives with HS can be a game-changer and show you that it’s possible. The nonprofit Hope for HS is one such place where people gather virtually to chat about their experiences.
If it’s been a while since you’ve spoken with your doctor about your symptoms, Richmond also says it’s worth a check-in to make sure you’re doing all you can do. Knowing you’re on top of your routine and being proactive can sometimes help your mindset as well, since you’re doing all you can do. It’s about feeling empowered. “When your body feels out of control, that’s a really unsexy feeling,” she says.
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