Hidradenitis suppurativa (HS) — also called acne inversa — is an ongoing inflammatory skin disease. HS causes acne-like lesions to develop in areas of the body with high concentrations of apocrine sweat glands and hair follicles, such as the buttocks, armpits, groin, and under the breasts. People with HS may worry about sex or physical intimacy because of the lesions’ location, as well as possible odors and drainage.
Despite these concerns, having HS does not mean you cannot enjoy sex and intimacy. In fact, research has found that diminished sexual intimacy can have a negative impact on those with HS.
If you are struggling with sex because of HS, it can be helpful to understand that you are not alone in these concerns. Here, we will explore some of myHSteam members’ most common sex-related concerns, as well as how they handle them.
Everyone diagnosed with HS has different concerns when it comes to sex and intimacy. Here are some of the most common issues discussed by myHSteam members.
Many myHSteam members express feelings of embarrassment over their appearance as a result of HS. This is often the case when HS affects the genital area. As one member wrote, “I’m a wreck down there. Scarred and pitted and black marks. I’m too embarrassed to have sex.”
“When it comes to intimacy, I am so stressed out,” one member shared. “I hate feeling this way and not having any real relationships.” Another member wrote, “I have also let this wretched disease keep me from pursuing any intimacy or relationships. I know it’s twisted thinking — I wouldn’t care if my partner had this, but I assume men would be put off. So I haven’t tried.”
These feelings of embarrassment or shame can significantly interfere with a person’s overall confidence, mental health, and quality of life. According to one study, almost 48 percent of people with HS said they feared sexual rejection — even those who were in stable relationships. Nearly 43 percent considered themselves less attractive than the average person because of the damage that HS causes.
It is important to note that HS does not appear to affect sexual desire. Although people with HS may want to have sex as much as those without the condition, these concerns can deter them from pursuing sexual relationships. This is particularly true of women and single people, whose sex lives are more likely to be affected by HS. However, men are not immune from these insecurities.
Some people worry that their partners will think that the scars left by HS are signs of a sexually transmitted infection (STI). This is particularly common among young adults, who may not have partners who can recognize STIs or who may not have experience discussing their condition before intimacy.
One member reported significant distress because of this misunderstanding: “Having sex was the worst embarrassment I’ve been through back then. Besides my pits and underboob area where my bra sits, I had a few around my private parts, and one day, a guy I was with saw down there and thought it was an STD [sexually transmitted disease], like herpes. After that, I was so self-conscious.”
Some people with HS struggle with sex because of the pain that comes from their flare-ups. Some don’t want to be touched at all, while others fear that intimate contact will hurt, leading them to avoid it altogether.
One member summed it up, writing, “My HS looks so bad, and flare-ups make me resist intimacy.” Another member explained that the extent of their pain has “ruined my sex life. I don’t even want to touch myself.”
Several members have shared that lesions on or around the vulva (the external part of the female reproductive organs) have a particularly significant impact on their desire to have sex.
One explained, “I have a very large lump on my vagina, which my doctor said is my new normal. I am embarrassed by it — it hurts and drains. I no longer wish to be intimate.“ Another added, “My lump is so huge, right on the outside of my vagina, and I’m in absolutely so much pain. My boyfriend wants sex, but I just want to be left alone.”
As with negative feelings about the appearance of HS, the pain associated with HS lesions can get in the way of sex, even when it is wanted. This, too, can negatively affect a person’s mental health and sexual health.
One study underscored this, concluding that HS symptoms and active lesions in sensitive areas are significantly related to sexual distress in people diagnosed with the condition. HS-related pain also seems to be associated with limited sexual functioning. In fact, pain is the most common factor deterring people with HS from sexual intimacy.
People living with HS are sometimes concerned about discussing their condition with current or potential sexual partners. Some find it easy to talk about their HS, and others find themselves at a loss when trying to explain the condition and its physical impacts.
As one member wrote, “My biggest thing has been that I don’t even know how to approach sex and go about being open and honest about HS, since it’s not really something I talk about, aside from the two friends that know about my condition.”
Several members of myHSteam have sought advice about discussing HS with intimate partners, like one who asked, “If you have had an HS flare-up with your genitals, how do you feel about telling a partner/how do you explain your HS situation to your partner? I’m new to it all, and just don’t know how to go about it.” Another asked, “How do you work in relationships and intimacy having the lumps and scars that are visible?”
As with any aspect of physical intimacy, it is important to have open, honest dialogue with any sexual partners about your HS. If you don’t know where to begin, you may want to consult your dermatologist. A dermatology specialist or other health care provider can help you craft a simple but informative way to explain HS to future partners. This may include what HS is, how it affects you physically or emotionally, and the fact that HS is not contagious or sexually transmitted. You may also wish to speak with a mental health provider, couples counselor, or sex therapist.
Despite the challenges HS can pose, having the condition does not mean the end of physical intimacy. Understanding how your symptoms affect you and maintaining open communication with any partners can help you continue to enjoy sexual relationships.
As one member shared, “My husband knows all about it. I hate being touched in a flare-up, and he gives me space until they heal.”
“I’ve been with my husband for 21 years,” another member wrote. “Now, I just say, ‘Babe, I’ve got a spot there.’ In the beginning, I would avoid intimacy. Eventually, I just laid it out — this is what it is, this is what it does, I can’t control it. I was mortified, but thankfully, he was understanding.”
Finally, as one member put it, “I never thought I would get married or have anyone love me, but I did find someone. We think that no one could love us, but they can. There is more to us than HS!”
If you have been diagnosed with HS or if you love someone who has, consider joining myHSteam today. Here, you can ask questions, offer support and guidance, and connect with more than 27,000 members from around the world who understand life with hidradenitis suppurativa.
Have something to add to the conversation? Share your story or thoughts in the comments below or by posting on myHSteam.