What is hidradenitis suppurativa?
Hidradenitis suppurativa (HS) is an uncommon skin condition that affects the vulva and other parts of the skin, particularly the groin, under the pubic hair, armpits and under the breasts. It is caused by chronic inflammation in certain glands that are only in these parts of the body. These glands are called apocrine sweat glands.
HS can range from a minor problem that is of nuisance value only, to a very severe and disabling condition. It may be associated with severe acne and pilonidal sinus.
What problems does HS cause?
People with HS experience painful lumps that drain pus, as well as abscesses and large blackheads. After these lesions heal, they often leave scars. On the vulva, HS affects the skin under the pubic hair, outer lips, groin, around the anus, and sometimes the buttocks. There is also a type where smaller lumps occur mainly on the inner surface of the inside lips of the vagina.
HS is not caused by an infection, but because of the abscesses, patients are often treated for many years with courses of antibiotics, lancing of the abscesses, or surgery to cut out the lumps. However, tests for infection are usually negative, antibiotics are of limited benefit, and the lumps often come back after surgery. Many patients have had HS for some years before the correct diagnosis is made.
HS often runs in families. The course of HS is influenced by hormones. In women it usually only happens during the menstrual years, because of the active hormones during this time. It may get worse before every period.
HS is made worse by male hormone (testosterone). This does not mean however that women with HS have higher levels of male hormone than normal. In fact they usually have normal hormone levels.
Some cases of HS start when a person starts cigarette smoking. Smokers sometimes find that quitting smoking cures their HS.
Treatment of hidradenitis suppurativa
Because HS is not a common skin problem, you may need to see a skin specialist to make the diagnosis. HS cannot usually be cured, but it can often be successfully kept under control.
- It is important to try your best to give up smoking.
- Losing weight is helpful but not a cure.
- Following good skin care practices also helps (see Vulval Skin Care)
- First-line treatment is normally a long-term oral tetracycline antibiotic such as minocycline or doxycycline. Although HS is not caused by an infection, tetracycline and some other antibiotics improve it by an anti-inflammatory action.
- Some patients with milder disease can be helped by antibiotic lotion containing clindamycin.
- If you are taking the oral contraceptive pill, it can be very helpful to change to one that contains an anti-male hormone.
- There are other anti-male hormone medications that can be added to the treatment programme if necessary.
- Painful lumps can be lanced, or injected with cortisone.
- If the affected skin area is small enough, it may be possible to surgically remove the entire area, which will cure the disease. It is always worth discussing this with your doctor. Unfortunately, many cases of HS are not suitable for this treatment.
What does the future hold?
HS is a lifelong condition. It may get less severe at menopause but won’t go away completely. This means that you may have to use some sort of medication for life. Many patients are however prepared to do this, because untreated HS is so distressing.
Talk about your options with your doctor.