Hidradenitis suppurativa (HS) can show up in tough spots. When it’s near or on your genitals, it can impact your physical and mental health. What does HS mean for your relationships? Can your partner get it? How is it treated?
There are answers to these questions. Those answers can help you get treatment and learn how to talk with your partner. HS is a chronic condition, meaning it will come back, but there are ways to get a handle on it.
HS is a chronic, inflammatory skin condition that affects areas of the body with sweat glands. It impacts between 1 percent and 4 percent of people, is 3 times more common in females than males, and often shows up:
- in the armpits
- where skin rubs together in the groin
- under the breasts
- around the anus
It can also crop up on the scrotum, vulva, buttocks, and perineum. It does not typically appear on the labia. Flares elsewhere on the body can be a useful tipoff when figuring out if you have HS.
Paths can form between the boils, making the entire area very painful, and causing drainage and scarring.
The condition can be super debilitating, but is often tricky to diagnose. Many people don’t know they have HS until years after symptoms start.
One study in Germany found that people sometimes wait 10 years to get the right diagnosis — and it’s usually a dermatologist who puts the right name to the experience.
The first visible symptom of HS is often a tender, deep lump under your skin. HS looks like pimples or boils. Your skin may clear up, but the bumps may come back in the same spot, sometimes bigger or feeling like multiple bumps. You might notice a bunch of open blackheads.
Before there’s a lump, your groin area may feel swollen, itchy, or bruised. After bumps appear, they may connect with tracts and fill with fluid. You may feel pain in the area.
The bumps may break open, leaking pus and blood. Over time, some people get black spots and scars from wounds that open and heal over and over.
While it is rare for HS to occur on the genitals, it may show up in the perianal area, scrotum, or skin folds at the tops of the legs.
If medication or advice from your doctor hasn’t helped with your genital bumps, you can ask for a referral to a dermatologist. HS is commonly mistaken for other conditions. A specialist can help you get the right diagnosis and treatment.
HS doesn’t have a cure yet. But your dermatologist may help you treat HS. The earlier it is diagnosed, the better the long-term outcome. Newer biologic drugs also look promising, so there is hope that you can manage the condition.
Here’s how your dermatologist might approach your HS:
- First, they may recommend an antibacterial wash with a topical antibiotic, and possibly steroid injections to reduce inflammation.
- The second line of treatment is usually an oral antibiotic.
- A biologic drug called adalimumab works on the immune system and may be prescribed to help with inflammation. Other biologic drugs are being tested.
- Your dermatologist may recommend surgical removal or drainage of the area.
You may need pain medication while dealing with a flare.
Your doctor might also help you find resources for depression or anxiety if HS is causing you to experience these conditions.
It can be tough to talk with your partner about HS. But when you feel comfortable doing so, having the conversation might help your relationship.
It’s not something you need to bring up when you’re first getting to know someone. But as the relationship gets stronger, you may want to tell your partner about HS and what it means for you.
It’s a bit different for everyone. But HS might make it painful or uncomfortable for you to have sex in certain positions, for example.
You might experience many emotions when thinking about having this talk. People with HS often also live with anxiety and depression. They might often face stigma because others don’t always understand HS or what it means.
These feelings can also affect how you feel about intimacy. Starting off small by talking with your partner in general terms about having a skin condition can open up the conversation.
You can also talk with your doctor about treatments to reduce pain and flares. That can make intimacy less painful.
Your healthcare professional also can give you resources to support your mental and sexual health, like a referral to a therapist or counselor.
HS is not an sexually transmitted infection (STI). Your partner can’t get it from you. HS is an inflammatory skin condition.
Although the exact cause is unknown, researchers have found HS may have a genetic component. Other risk factors include:
- follicular occlusion disorders other than HS, where the hair follicle becomes blocked with keratin
- altered skin microbiota
- a kind of inflammation that ruptures the follicular wall and damages glands and ducts in the skin
Skin friction and sweating can also make flares more likely.
It may help to tell your partner that HS is not contagious. It also doesn’t mean that you are unclean. But the condition can be difficult to manage, so it’s OK for you to want compassion and understanding from your partner.
If you are not sure whether a bump or lump in the groin is HS, you should have your doctor check it out.
HS typically appears on skin folds that rub together. HS flares are less common in the groin, so you want to ensure your diagnosis is spot-on.
Other conditions that cause bumps on the genitals and groin include:
- Bartholin’s and epidermoid cysts, which show up as lumps on the labia
- abscesses, pus-filled lumps caused by a bacterial or anaerobic infection
- boils, which are single, painful infected hair follicles and may start out looking like pimples
- carbuncles, which are a cluster of boils
- Crohn’s disease, which can show up as a lump in the perianal, groin, or vulva area
- genital warts, bumps that can look flat and are often painless, caused by types of human papillomavirus
- genital herpes, which looks like a rash with small, painful blisters
- an enlarged lymph node, which can be a sign of a clearing infection
It can take a long time to get the right diagnosis when you have HS, but an early diagnosis means better outcomes and can rule out other conditions.
Once you have a diagnosis of HS, you can use treatments that help you manage bumps and reduce flares. It’s not easy to talk with your partner about HS near your genitals, but starting the conversation may strengthen your relationship.