Caroline Hill: “It took eight years to get a correct diagnosis for HS”

There is no cure but a combination of medical and surgical treatments, as well as pain management and lifestyle changes can greatly ease this invasive skin disease, says Áilín Quinlan, of the Irish Examiner.

Caroline Hill was only 17 when the first abscess appeared under her arm.

About the size of a kidney bean, it was extremely tender and very painful. She put a traditional bread poultice on it she recalls, and the abscess disappeared — but not for long.

That first small lump was actually the first sign of an intensely painful, debilitating — and incurable — lifelong condition, which gave her a gait she likens to that of John Wayne. A chronic skin condition, Hidradenitis suppurativa (HS) is also known as ‘acne inversa’.

It is characterised by recurrent, painful nodules, ‘boil-like’ lumps or abscesses that can occur in the armpits, groin, perineal area, buttocks or under the breasts.

Because of the nature of HS, and because of where it tends to manifest in the body, it can be a very distressing and even embarrassing condition which is little discussed and often misdiagnosed.

HS is frequently mistaken for an infection or boils, and people living with the condition are not diagnosed easily — in fact, research shows sufferers may seek the opinion of five different healthcare professionals and attend medical appointments about it for some eight years before they get a correct diagnosis.

Now a stay-at-home mother-of-two aged 35, the Blackrock, Cork, woman recalls that only a few weeks after that first bread poultice seemed to cure it, the abscess reappeared. She applied another poultice, something which was to happen on several more occasions over the next three months.

“I eventually realised something was wrong, and when the next one appeared, again in the armpit, I saw my doctor,” she recalls.

Caroline was put on antibiotics, but although the abscess reduced in size, it didn’t disappear.

“Over the next few years I got several more abscesses, in my armpits. They were very sore. I was constantly going to the doctor, but nothing seemed to get rid of these abscesses permanently.”

Roll on several years and the arrival of the internet — it was actually thanks to internet research that Caroline who by now had been suffering for several years, realised she had a recognised medical condition.

“Over the years the abscesses had appeared under my breasts and in my groin as well as in my armpit — and the abscesses in my groin in particular, were very painful.

“Walking could be agonising. I walked like John Wayne because of the painful abscesses in my groin.” Eventually at about the age of 25 — some eight years after the first abscess appeared — she was referred to a dermatologist.

“By the time I saw the consultant I’d had abscesses on a constant basis in my armpits under my breasts and in my groin.

“Often I’d have them in different places, and all at the same time,” she recalls now. “I could have two under my arms and one in my groin at the same time. I was always in pain.”

The dermatologist explained to Caroline that there is actually no cure for HS. “I was put on various kinds of medication. I was told it was believed to be an auto-immune disease and I have been put on immune-suppressant medication.”

Currently, she reports, the medication is keeping the abscesses at bay most of the time, “but I do get occasional flare ups”.

HS is a very intrusive condition, says consultant dermatologist, Prof Anne Marie Tobin.

“If it becomes severe it is a truly horrible disease,” she says, adding that there are three stages ranging from mild to moderate to severe.

“It is progressive and can go from mild to severe over a period of years. A severe case of it causes a huge amount of pain and a lot of scarring in the groin and armpits .

“It is also uncomfortable and embarrassing because when someone develops a boil it is very painful and then it bursts, but although the pain goes, there is a discharge of foul-smelling pus,” she says.

Although patients may present to the GP or to Accident and Emergency departments where the abscess may be drained, she adds, healthcare professionals may not necessarily connect the fact that the abscesses are recurrent — so they may treat it as an isolated problem.

“It’s only in the last few years that there has been a consensus about how to treat patients. There is new medication for this condition, and how we look at it and how we treat it has improved.”

Over the past five to 10 years, says Dr Tobin, agreement has been reached among medical personnel that treatment for this condition is actually a combination of a number of things — medical and surgical treatments, pain management and lifestyle changes like weight loss and smoking cessation.

Up to 70% of HS patients are smokers, she points out, while patients are also likely to be overweight, obese or female.

“About one in three patients have a family history of the disease. It is a horrible disease,” she says, adding that its unattractive presentation and the pain involved can affect personal relationships, while studies show that HS patients are more likely to lose days from work and be unemployed.

Research also shows that 63% of people with the condition experienced feelings of depression and hopelessness, 70% of people reported that it affected everyday tasks like shopping and gardening, and 76% felt that participating in sport was very difficult due to their HS.

The initial problem, Dr Tobin explains, is caused by a hair follicle becoming blocked.

It bursts, causing inflammation and an abscess which in turn sparks an abnormal immune response in the skin.

“We know it is not related to poor hygiene, but we are still uncertain as to what triggers the initial blockage,” she says, adding that about one per cent of the population has it “so it is reasonably common”. And, since it cannot be cured, the priority is to manage it.

Early diagnosis is important, both for treatment, she says, and for the support of the necessary lifestyle changes.“However,” she warns, “if it becomes very severe it can be hard to treat.”

There is no cure but a combination of medical and surgical treatments, as well as pain management and lifestyle changes can greatly ease this invasive skin disease, says Áilín Quinlan.

Reproduced with the kind permission of the Irish Examiner.     

For more information about HS, visit our main HS page.  If you need help or guidance about managing your HS, ask our dermatology nurse.