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Dealing with a horrible, ‘hidden’ skin disease

Hidradenitis suppurativa is a serious skin ailment affecting about 4% of women (and some men). Dr. Judith Reichman has details.

Q: I have what looks like really bad acne in my groin area. From a few things I’ve read I think it may be something called hidradenitis suppurativa. What can you tell me about this scary-sounding condition?

A: For a disorder that is so poorly understood, under-diagnosed and under-treated — and has such an unfortunate name — hidradenitis suppurativa is not that uncommon. It affects as many as four percent of women, and is more common in women than men. Non-contagious, it begins after puberty, but often comes to the fore between ages 20 to 30.

It definitely is in league beyond acne. Hidradenitis suppurativa refers to a pus-filled inflammation of the apocrine follicles, or sweat glands. Doctors refer to it a chronic, relapsing disease, which means that it is always present but that it tends to flare up at times. It can lead to deep infections and abscesses in the areas which contain many of these glands — primarily the armpits, groin, the perineum (the area around the genitalia) and buttocks. The glands become infected with bacteria present on the skin (streptococci, staphylococci or e.coli) or with bacteria that don’t like oxygen (anerobes).

If you are diagnosed with hidradenitis suppurativa, your doctor should make sure you don’t also have an underlying disease or hormonal imbalance.

Though the cause of hidradenitis suppurativa is unclear, it is known to be more common in individuals who are obese or have diabetes, pre-diabetes, excess production of male hormone or Crohn’s disease. It appears to have a genetic component — some sufferers have a defect in their immune cells — and is thought to be aggravated by stress. It can also be triggered by smoking or lithium therapy.

The increase among the population of many of these contributing factors — notably obesity, diabetes and stress — means that instances of hidradenitis suppurativa are likely to be on the rise.

The lesions start as painful nodules that persist for weeks and then spread to lower layers of the skin. They may rupture, oozing pus. When the lesions heal, they leave behind thickened scars. Sometime, the infection is so bad it can cause fever.

How is hidradenitis suppurativa treated? Doctors usually prescribe antibiotics for two weeks when new eruptions occur. The lesions can also be injected with steroids to help them clear up faster.

If hidradenitis suppurativa becomes chronic and relapsing, long-term antibiotics are prescribed. The efficacy of these can decrease over time, so patients may need to stop and then restart them a month or two later.

It can also be helped by use of birth-control pills. This is because the estrogen in the Pill can diminish the effects of male hormones, which tend to promote production and build-up of fatty substance within the sweat gland. It is this substance which clogs the opening and initiates inflammation and infection.

If you are on the Pill (or are using two forms of reliable contraception) you might also benefit from a four-month course of Accutane, a powerful anti-acne drug. (Accutane, which is the brand name for Isotretinoin, can cause serious birth defects, hence the need to avoid pregnancy.)

Unfortunately, none of these therapies can completely control the underlying disorder. In some cases, doctors will need to remove the affected areas. If the lesions are deep or have formed tracts to other tissue, the surgery is more extensive and may even require skin grafts.

Dr. Reichman’s Bottom Line:  This is not simple acne. See a gynecologist or a dermatologist who understands the chronic nature of hidradenitis suppurativa. Ongoing care is needed; it may not cure the condition, but can alleviate pain and control complications from infection.

Dr. Judith Reichman, the “Today” show's medical contributor on women's health, has practiced obstetrics and gynecology for more than 20 years. You will find many answers to your questions in her latest book, "Slow Your Clock Down: The Complete Guide to a Healthy, Younger You," published by William Morrow, a division of .

PLEASE NOTE: The information in this column should not be construed as providing specific medical advice, but rather to offer readers information to better understand their lives and health. It is not intended to provide an alternative to professional treatment or to replace the services of a physician.