Sexuality and Hidradenitis Suppurativa

Sexual health and positive body image are important aspects of quality of life that can be affected by hidradenitis suppurativa (HS). HS is a chronic, or long-term, auto-inflammatory skin disease that affects areas of the body that rub together, like the groin and armpits.¹

How HS affects sexual health

Sex is a basic human need that is important for mental health and overall quality of life. The symptoms of HS can affect one’s ability to interact socially and have intimate relationships.^1,2

The condition causes lumps and sores, called abscesses. Sometimes these sores burst open, leaking blood and/or pus. This discharge can have a bad odor and may also stain clothing.²

The lumps are often very painful and tend to be found in areas like the groin, pubic area, and armpits. People with HS often feel isolated, sad, or depressed because of their disease.²

Some abscesses never heal. If they do heal, they often leave behind scars and pitted skin. This scar tissue can make it difficult or painful to move freely. The scar tissue also affects the lymphatic drainage system. This could cause swelling in the arms, legs or genitals.²

Many people with HS report having body image issues due to the sores, odor, and scarring.²

All of these symptoms can make HS a very lonely disease. The symptoms can be painful and embarrassing. People with HS may find it hard to be in public or around other people, especially in intimate settings.^1,2

The risk of sexual distress in HS

One study evaluated levels of sexual distress (SD) for people with HS. The researchers found that women and single people were at higher risk of having sexual distress.^1,3

Women are generally at high risk of getting HS. They are also more likely to have sexual distress from HS than men. This may be because doctors think there is a connection between hormones and HS symptoms. Some women can get flare-ups right before their menstrual cycle. There is also evidence that oral contraception, or hormonal birth control pills, can help reduce HS symptoms.⁴

Another risk factor was the presence of active lesions in the groin and genitals. People who have abscesses or scarring in those areas tended to have a higher likelihood of sexual distress.^1,3

Additionally, the severity of pain resulting and the amount of odor resulting from HS sores contributed to greater sexual distress.^1,3

How bad the disease had progressed was also a risk factor for sexual distress. People who had more or worse symptoms also tended to have a higher level of sexual distress.^1,3

Smokers with HS were also more likely to have sexual distress.¹

One of the things that helped prevent sexual distress was being in a stable relationship. Researchers think that having a trusted partner with may reduce potential feelings of self-consciousness, shame, and fear of rejection.^1,3

Tips for maintaining a healthy sex life with HS

Disease severity plays a big role in sexual distress for people with HS. Since there is no cure for HS and it will not go away on its own, it is important to make sure HS is controlled as well as possible.^1,3

There are several ways HS can be managed, including:²

• See a dermatologist – a doctor can provide a treatment plan that keeps HS from getting worse
• Stop smoking – smoking contributes to HS flare-ups
• Maintain a healthy weight – people who are overweight who lose weight may see an improvement in their HS symptoms
• Stay cool – sweating or getting overheated can make HS worse
• Wear loose-fitting clothes – tight clothing can cause HS flares
• Treat lumps at home – apply warm compresses to soothe painful lumps
• Watch out for joint pain – people with HS are more likely to have joint issues
• Join a support group – talking to other people with HS can help with the mental and emotional impact of the condition