My first symptoms of hidradenitis suppurativa

Since I was about 14, I always had one small boil that would appear in my inner thigh area and I never thought anything of it – I just assumed it was an ingrown hair.  More would come and go, leaving behind scars. As time went on, boils and abscesses on my thigh area became normal, a part of me.

Cathryn's thigh

When I was around 20 years old I started to suffer from severe cystic acne. I regularly went to the doctors about the spots on my face but I never thought to ask about the abscess that was regularly coming and going. Still convinced they were connected to ingrown hairs, perhaps from waxing and shaving too roughly, I focused on the facial issues instead. The abscesses would flare up then fill with pus and either burst or go back down before the process would start again.

Abscesses in sensitive areas due to hidradenitis suppurativa

Last year, aged 25, I was studying music in college. I remember feeling really drained whilst sitting in front of the computer one morning. As I adjusted myself to sit up straight in the chair, I felt the worst pain I’d ever experienced. My eyes watered as it felt like the seam of my trousers had pressed against the tender area around my buttocks. I carried on with my work and tried to ignore the pain.

Later than day I looked at the painful area in the mirror at home. I was met with an extremely inflamed, bleeding abscess on my behind. Over the next few weeks, my old thigh abscess reared its head again, with new abscesses appearing under my breast area. Within three weeks my groin, buttock and underneath my breasts were covered in swollen raised abscesses – it was agony.

Getting diagnosed with hidradenitis suppurativa

At first I thought it could be acne in different areas of the body. Perhaps I was unlucky enough to suffer from it in different areas as well as my face? I made an appointment with my GP who didn’t know what was wrong, but sent me away with antibiotics. The antibiotics didn’t help, so I returned to my GP.

The second time, the doctor suggested it could be some sort of sexually transmitted disease (STD). I was sure it wasn’t but agreed to go to the local GUM clinic to make sure. I remember being so embarrassed – it’s bad enough having someone poking around down there – without the sores too.

I remember the doctor being right up close to my privates before she started speaking to me again. The doctor was still examining me when she laughed and said, “This couldn’t be further from an STD if it tried, you have a condition called hidradenitis suppurativa (HS), not an STD and absolutely nothing to do with acne either.”

It was quite funny at the time; I said I’d never had someone laugh near my vagina before! We spoke in her office for a while and all my results came back clear. The doctor said I needed to go back to my GP and let her know I have HS.

I had no idea what HS was and found myself Googling it for more information, discovering it was a progressive disease. My GP hadn’t heard of the condition but another doctor in the surgery had and was still learning about it. It is still unknown to some doctors, so I feel incredibly lucky to have found out what it was.

I was devastated when the doctor told me there was no cure for HS. I was sent home with antibiotics to ensure there was no infection, but unfortunately that wasn’t a permanent solution.

What is hidradenitis suppurativa?

Put simply, HS means I have recurrent abscesses on certain areas of my body – where there are sweat glands – forever. HS progresses in stages and I was very fortunate to be diagnosed at stage one. I am fortunate that I can try and manage the condition from this early stage. The worst cases can require surgery as a last resort.

I take long-term antibiotics, alongside some steroids to calm the inflammation. These medicines, combined with anti-inflammatory diets help me manage the condition and keep on top of it as much as possible.

Over the last few months, after the initial diagnosis back in April 2018, I have had some difficult times. I have felt depressed due to the self-esteem issues that HS brings, and I struggle with fatigue when the sores flare up. I won’t lie about it – HS is not something that you just come to terms with overnight. It can affect your ability to work, study and do normal things.

HS presents on the skin, but it can really take a toll on the whole body, emotionally and physically. There’s a lot more nights in than before, a lot more ‘self-care’. If I need to cancel plans because I’m flared up and not able to walk or the skin is too sore, then so be it! But I don’t let it get me down too much anymore; I just look at it as rest for the better times to come.

The first few months hurt me mentally. I was an emotional mess, planning my life around my skin. I had to make sure I had the right type of loose-fitting clothing so as not to irritate the skin. I worried about what someone might think if I was intimate with them.

I had to make time to change dressings on the sores and panicked when I had to do this out and about. At times, I needed to use the disabled toilet so that I had room to move around comfortably. I’d feel like a fraud using the disabled toilets but it’s something I leaned I have the right to do. My illness is hidden beneath my clothing – invisible to others but very real to me. I learned to worry about myself, instead of what others might think.

Learning to live with hidradenitis suppurativa

This year I learned that all these worries are normal. I’m stronger and I’m not letting HS control my life. Yes, it’s not easy, sometimes I cry about it and some days I embrace it. I live very differently from other people when I’m flared up, but flare ups come and go. I learned that I am so much more than just skin and that my close friends and family will love me no matter what my skin looks like. One of the most important things is rest. During a flare up our bodies are under strain and it’s so important to rest.

Reaching out for support is so important too, my family are very aware that sometimes I need to stay in comfortable pyjama bottoms and just rest. It can be embarrassing opening up to the doctor about the sores, but it’s so important to tell someone. The doctor might not get it right first time, but you mustn’t give up! Doctors will never judge you; they look at different bodies all the time. HS is a disease and it’s nothing to be ashamed of.

A common hashtag amongst HS patients is #HSWarrior and that’s exactly what we are – we fight through this illness daily. The strength I witness amongst HS sufferers is inspiring and incredible. Our abscesses and scars are part of us, but will never define us.

Cathryn Caulfield

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