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When it comes to sex and hidradenitis suppurativa (HS), it’s normal to have concerns about physical intimacy. You might worry about a partner coming into contact with painful or sensitive lesions or feel embarrassed about possible odors and drainage.
If you are struggling with sex because of HS, you are not alone. Here, we will explore some common sex-related HS challenges and tips for how to handle them.
While living with HS can be difficult to explain or feel embarrassing to discuss, it’s a good idea to try being open with your partner about how HS affects you.
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Open communication can help reduce some of the pressure on you and give your partner a chance to adjust to meet your needs. However, sometimes it can be hard to figure out how to start the conversation.
As with any aspect of physical intimacy, try to have open, honest dialogue with your sexual partner. If you don’t know where to begin, you may want to consult your dermatologist.
A dermatology specialist or other healthcare provider can help you craft a simple but informative way to explain HS to future partners.
Your explanation 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. They may suggest practicing your explanation until you become comfortable with it.
As one myHSteam 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.”
Avoiding discussing your HS may cause more stress and confusion. Many myHSteam members often say that over time, clear communication helps set expectations and make discussing sex with HS less uncomfortable.
As one member shared, “My husband knows all about it. I hate being touched in a flare-up, and he gives me space until [the lesions] 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 he was understanding.”
Feelings of embarrassment or shame related to HS can significantly interfere with a person’s quality of life, body image, and overall confidence. Having lesions appear in the groin, on the buttocks, or in genital areas can be very emotionally taxing and detrimental to one’s self-esteem.
In fact, in one study, people with HS (more than two-fifths of participants) were less likely than people without HS to consider themselves sexually attractive to others.
Embarrassment and shame about lesions located in sensitive areas can also put a damper on sexual activity. In the study mentioned above, around 48 percent of people with HS said they feared rejection, or feared the reaction of their sexual partner.
“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. I hate feeling this way and not having any real relationships.”
“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.”
To combat these feelings of embarrassment and insecurity, it’s important to dispel any myths your partner may believe about HS and to practice clear communication.
Some people worry that their partners will think that the scars left by HS are signs of a sexually transmitted infection (STI) or that their lesions are due to poor hygiene.
It is important for people to be aware that HS is not a contagious disease, nor is it due to a lack of cleanliness. Myths like these can increase feelings of depression or shame among people with HS. Dispelling myths about HS can help people overcome these feelings.
Clear, open communication and helping your partner become educated about HS can help with embarrassment.
If your partner is aware of your HS, what it is, and how it affects you, it may help alleviate some of your embarrassment or make it easier for you to express your needs during intimacy.
You may also find some relief in discussing your challenges with HS and sex with others who share your experiences. On myHSteam, members regularly give each other encouraging advice.
One member said, “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!”
The stress and pain of living with HS can impact your mental health.
Anxiety and depression are unfortunately common in people with HS. Your risk of developing anxiety or depression may be higher if you are having issues in your sex life.
Anxiety and depression can also increase the risk of sexual dysfunction, such as low sex drive, inability to orgasm, erectile dysfunction, and other problems.
For instance, in men over age 40 with HS, erectile dysfunction is more common than it is in those without HS. Medical experts think there may be a psychological element to this, but it could also relate to blood flow, inflammation, or nerve damage.
If you are experiencing sexual dysfunction, consider reaching out to your healthcare provider. They may be able to prescribe medication to help you.
Not everyone experiences a reduced sex drive as a result of their HS. Some studies have found that some aspects of sexual function, including sexual desire, lubrication, and orgasm, are not significantly reduced among people with HS. In some cases, they may be higher.
Because of findings that sexual desire remains high in some studies, while sexual satisfaction is low, researchers think that there is a complex relationship between the physical, psychological, and social issues that limit sexual activity and sexual satisfaction in people with HS.
In addition, HS was also reported to impact some HS partners as well. The extent of this impact may be influenced by factors that can be managed, including how severe and active your HS is, symptoms such as unpleasant odor and itching, and your weight.
The pain associated with HS lesions can get in the way of sex, even when it is wanted. Some people may not want to be touched at all, while others may fear that intimate contact will hurt, leading them to avoid it altogether.
HS-related pain also seems to be associated with limited sexual functioning, with pain being the most common factor deterring people with HS from sexual intimacy. It is especially likely in women with HS that more severe HS pain leads to reduced sexual function.
Several female myHSteam 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 member 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.”
It’s a good idea to talk to your doctor about treatments that might relieve your symptoms. There are ways of managing acute pain that you are experiencing and long-term ways of reducing your flares. If your HS is under better control, you might find that your sex life improves.
Speaking with your partner about what’s comfortable or painful for you is also a good idea. You may be able to try different positions, activities, or other adjustments to ensure that sex can be enjoyable for both of you.
Despite the challenges it can pose, HS does not mark 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.
If you find that your HS is heavily impacting your sex life, seek support from your healthcare provider, a mental health professional, or a sex therapist. Speaking with others in online or in-person support groups may also be helpful.
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I live in Michigan in the suburbs of Detroit..although I don't feel pain I need a dermatologist that specializes in HS..My lesions are under my breast and the crease between my thigh and vagina..ive… read more
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