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.
“It is important to consider your own internal boundaries, which can help with setting boundaries with others,” DiCamillo says. For example, you might not like having partners get too close to scars from old lesions. If that’s the case you can say something like, “I feel more comfortable if you avoid touching specific areas,” and then explain the regions you’d like your partner to stay away from. DiCamillo also recommends discussing a plan that includes how you want to proceed if something awkward or uncomfortable happens during sex. “That plan could be different for everyone,” DiCamillo says. “It may have a safety word that indicates someone needs to stop and pause or engage in something else that feels safe,” she says.
Understandably, it can feel really uncomfortable trying to do this with someone you just met or don’t know well. But this kind of discussion can be so worth it, and you don’t have to lead with anything health-related if you’d prefer to ease into that part of the conversation more gradually. Alex S., 24, who was diagnosed with hidradenitis suppurativa in 2011, says they find it easier to tell their partner (even casual partners) that they want to discuss how to make the experience the best that it can be. “I want us both to have a good time when we do have sex, and part of that is being aware of each other’s likes and dislikes and any boundaries. Hidradenitis suppurativa is a part of that discussion,” Alex tells SELF.
3. Do your best to avoid irritating lesions during or after a flare.
Sex may be the last thing on your mind during a groin or armpit flare because the pain can make it hard to do just about anything. Know that if you have a lesion around your genitals, friction or irritation from sex could make your flares worse. Lesions can also become infected, so it’s important to be really careful when you have flares3.
Sreedhar Krishna4, MBBS (an international medical degree equivalent to an M.D. in the U.S. system), consultant dermatologist at the National Health Service in the U.K., works with people who have hidradenitis suppurativa and says it’s vital not to irritate already-inflamed skin when having sex. “It’s important to let your partner know of areas that are tender for you,” Dr. Krishna tells SELF. “Rough play may traumatize already inflamed areas, so be clear with your partner about boundaries before engaging in sex,” Dr. Krishna says.
Becky M., 29, has been managing her hidradenitis suppurativa since 2017 and says that covering lesions with self-adhesive dressings makes it more obvious where her flares are located. “My boyfriend is less likely to touch it [the sore] by accident if there’s a big Band-Aid on it as it’s more obvious where it’s painful,” Becky tells SELF.
4. Explore other forms of pleasure with your partner.
Let’s just say it: Sometimes, having sex can feel really awkward. And having a cyst break open right before you want to have sex or during sex can only add to your discomfort. There is no right way to handle scenarios like these, as everyone’s situation and comfort levels vary, according to DiCamillo. If you already talked about what to do if something awkward happens during sex, then DiCamillo recommends referring back to your initial conversation. If you didn’t discuss this earlier, and you feel comfortable communicating in the moment, then each of you might talk about what you want to happen next, she says. After addressing any medical concerns, like by bandaging a cyst, you may be open to pleasuring each other in ways that are feasible at the moment, DiCamillo says.
Alex reiterates that talking about hidradenitis suppurativa early on helps with any potentially awkward situations. They once had a cyst burst open under their breast on a date with someone they didn’t know for very long. “It was pretty messy, but because I had already explained hidradenitis suppurativa, they were really understanding. We still went home together and had sex and were careful to focus on other areas,” Alex says.
5. Consider talking to a therapist if you can.
John F., 37, was diagnosed with hidradenitis suppurativa in 2008 and says embarrassment prevented him from talking to his partners about his condition, which affected his relationships and mental health. “I didn’t know how to talk to people about hidradenitis suppurativa, and I suffered in silence for a long time. Eventually, I spoke to my doctor, who referred me to a therapist with experience in supporting people with chronic conditions,” he says. “They really helped me overcome feelings of shame and open up to new people. I’m now in a happy long-term relationship with a partner who understands,” John says.
Becky says that at one point she stopped having sex with her boyfriend because she felt really ashamed about her condition. “No matter how much he said it didn’t bother him, and that he loved me and found me sexy, I just didn’t see myself as sexy anymore,” she says. She started individual therapy and also went to couples counseling with her boyfriend. “I don’t know if our relationship would have survived if I had kept pushing him away, but now we’re really happy and our sex life is healthy. I still struggle with body image, especially when having a flare, but he understands and supports me,” Becky says.
And don’t think you have to be in a relationship to benefit from this kind of help! Talking to a therapist may also help you develop strategies that help you feel more comfortable talking about hidradenitis suppurativa with casual partners.
If you have insurance, you can ask your provider for a list of mental health professionals in your area. Or, you can find therapists who offer reduced-fee sessions on websites like Open Path and Thero.org. If you specifically want to discuss your medical condition, asking your clinician about their experience working with people who have chronic conditions may help you determine if they’re a good fit for you. You may also find it helpful to join a group like Hope for HS that offers monthly online meetings.
6. Talk to your physician about what’s bothering you.
If you don’t already see a dermatologist, talking to a specialist can be useful since they ideally will be very familiar with how hidradenitis suppurativa affects all aspects of your life. It’s important that your physician knows if your symptoms are interfering with your daily activities so they can help you find a treatment that may work better for you. If hidradenitis suppurativa is really affecting your mental health, your doctor may know therapists who specialize in working with people who have chronic conditions, like in John’s case.
Dr. Krishna, says there’s a lot that can be done to help manage hidradenitis suppurativa and encourages patients to find a doctor they’re really comfortable speaking to.
“By being an active part of the consultation, you’re more likely to get the treatment you deserve rather than the first treatment that can be offered. Good control of the condition will reduce the pain and discharge from the skin lesions,” Dr. Krishna tells SELF.
Sources:
1. Mayo Clinic, Hidradenitis Suppurativa
2. Cohesive Therapy NYC, Danielle DiCamillo, LCSW
3. American Academy of Dermatology Association, Hidradenitis Suppurativa: Diagnosis and Treatment
4. SkinDoc, Meet the Team
Related:
- 5 Ways People With Hidradenitis Suppurativa Take Care of Their Mental Health
- 5 Ways Real People Manage Hidradenitis Suppurativa Odor From Flare-Ups
- 5 Signs Your Doctor Is a Hidradenitis Suppurativa Expert