Health

6 Ways People With Hidradenitis Suppurativa Talk About Sex With Partners

I was diagnosed with hidradenitis suppurativa when I was 15. This chronic condition causes extremely painful lesions that commonly appear on the bust and around the groin1. At the time, my symptoms were minimal, so I didn’t understand how hidradenitis suppurativa and sex were related or how the condition would impact my relationships.

Dealing with pain from hidradenitis suppurativa groin flares, worrying what others will think about your lesions, or being rejected by a partner or potential partner are all things that can really affect your sex life. Since people don’t often talk about hidradenitis suppurativa, especially in relation to sex, you may feel like no one will understand your condition. You might even avoid romantic relationships because you’re embarrassed about your flares, which can sometimes have an odor. But trust me, you’re not alone. There are other people with hidradenitis suppurativa, and many of them enjoy active, healthy sex lives. To illustrate as much, I talked to a few other people with the condition, in addition to experts, for their advice on navigating conversations about sex with hidradenitis suppurativa. Here’s what they said.

1. Talk about hidradenitis suppurativa well before having sex whenever possible.

I had a very painful sexual experience with someone who didn’t understand my condition. I hadn’t explained hidradenitis suppurativa to my partner before we started having sex, and he mistakenly thought the red marks and small cyst on my groin were symptoms of a sexually transmitted infection. I tried explaining my condition, but he left, and my confidence was shattered. It took several years before I felt comfortable trying to have sex again. When I reached that point with someone I was dating, I explained on our third date that I had a skin condition that causes cysts. My partner was very understanding and game to have sex when we went back to his place that night.

Danielle DiCamillo2, LCSW at Cohesive Therapy NYC, works with people who have chronic health conditions. She recommends having a discussion about hidradenitis suppurativa well before sex, rather than right before sex, whenever possible. You’ll have more time to think through your feelings and any boundaries you want to set during sex this way. “When able to do so, you are able to better set boundaries and have a possible action plan for the ‘what-ifs’ that may show up,” DiCamillo tells SELF. This can also help you feel more in control and offer some sense of safety and predictability when managing an unpredictable condition, she says. Additionally, the other person has time to process and understand your condition, too.

Of course, you might not have time to talk about hidradenitis suppurativa well before every single sexual encounter, in which case you might feel even more vulnerable talking about your condition if you’re already in the midst of getting intimate, DiCamillo says. In those situations, it can still be helpful to have thought about what you want to communicate in advance, even if that means basically following a script of sorts. Sophie R., 26, who was diagnosed with hidradenitis suppurativa in 2016, says she talks about her condition whenever she knows she’s ready to have sex with someone. And sometimes, that’s just a few minutes before she actually has sex. “I always make it really clear that it’s okay if they don’t want to continue after I tell them,” Sophie tells SELF. “I usually just say, ‘So, I have a skin condition that leaves red marks and some cysts. They can be painful so please avoid them, but it’s not infectious and there’s nothing to worry about.’ Most people just say ‘okay’ and get on with things,” Sophie says.

2. Actually let your partner know about your boundaries.

You may feel like it’s hard to explain your pain or discuss why you don’t want to do certain things when having sex with hidradenitis suppurativa. But knowing each another’s boundaries is an important aspect of having comfortable sex, no matter what health conditions you may have. It helps to think through your preferences well before having sex so you have time to reflect on what’s right for you.

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