You might notice the area feels tight or itchy. It may be painful when passing urine, having sex or – for men – getting an erection. If it's around the anus, you may find it sore to pass a stool. At first, there may be nothing to see on the skin. Skin can become fragile and bleed if rubbed or scratched, and then feel very sore if it breaks down. It may form blood blisters or thickened areas with constant scratching. Later in the process, you may notice shiny white patches where it feels sore or itchy.
It occurs in both men and women. Men are most commonly affected around the foreskin or tip of the penis. For women, the labial folds (lips around the vagina) and perineum (the skin between the vagina and the anus) are most commonly affected. Occasionally lichen sclerosus occurs in non-genital areas, where you will see ivory spots or slightly raised patches resembling white tissue paper. These patches are seen on the neck, armpits, around the breasts or upper trunk, or on the inside of the wrists. It affects all ages, and can start in childhood, although this may resolve by puberty. Women are more at risk of this after the menopause. For a minority, this can occur alongside autoimmune conditions such as autoimmune Type 1 diabetes or Grave's disease of the thyroid, but the link isn't very well understood.
Treatment is with a strong steroid cream for several months to dampen down the inflammation and improve itching. There isn't necessarily a cure, but this helps to manage the flare up, which hopefully keeps any long-term scarring at bay. Circumcision is considered in some men if tightness persists. An emollient cream will soften and protect the skin, making it feel less itchy - the more greasy, the better, so ointments are often advised. Using an emollient in place of a soap will be less irritating and more repairing to the area. A lubricant may ease discomfort during sex. Any cause of friction, such as wearing panty liners or incontinence pads, or urinary leakage itself, can cause the area to become irritated and sore, so it's worth addressing any other problems or irritants. You can use a barrier cream such as Vaseline to protect against urine. This isn't a contagious condition, and can't be caught or passed on from intimate or sexual contact.
You should book a routine appointment with your doctor or sexual health clinic to get this condition confirmed and start treatment. This is likely to be a strong steroid cream for several months, which will relieve symptoms, help the skin repair and prevent long-term damage to the skin. They will also advise on the best emollient. If there is any doubt of the diagnosis or you are not improving after a couple of months on treatment, they may consider referring you to a skin specialist – a dermatologist. A bacterial, fungal or thrush infection can develop where the skin is cracked, so see a doctor for any increase in itchiness, any discharge or any change to the look or feel of the area.
Unfortunately, yes – small but serious risks. If left untreated, there is a risk that long-term inflammation will cause the tissue to permanently change, which can alter the anatomy. Additionally, there is a small increased risk of cancer in the area (vulval or penile cancer), so check yourself regularly and make sure to get any lumps, ulcers or crusted lesions checked out.