My name is Sarah-Louise and I work in social care. I’ve been suffering with a skin disorder since the age of 16. If there is one thing that I am good at it’s pushing the issue under the carpet (just like my exam results!). But it eventually comes back.
This is my story.
I was 16, just back from a family holiday in Turkey, and I had an itchy armpit. It started on my left side and there was nothing on my skin; no redness, no bumps, just a very aggressive itch that was driving me demented.
A week later, I discovered a pea-sized, painful lump in my armpit. Then there were several of them. They appeared to be like cystic acne spots. Red, swollen and painful. I initially thought that I had caught something in the pool on my holidays but I just told myself “Ah, it will go away”.
I paid no attention – to my lifestyle or health. What 16 year old does?
The issue got worse; 7 spots turned into 30 big, angry boils that made me wince every time I wore a bra. I was 38FF when I was 16 and the only place I could get my bras was in the M&S granny section, so the underwire came right up to my armpit.
Then just before school started, I noticed that these boils had spread over to my right armpit. I started to worry but I didn’t want to tell anyone because I had issues on how I perceived my body. I thought that people would think I was unhygienic and I never showered, or it was because I had gained weight.
My insecurities got the better of me and I proceeded to ignore the issue. Going clothes shopping with my mother was a nightmare, an absolute shit show. She would make me try on clothes that were sleeveless and then come into the dressing room unannounced.
I would scream and have a tantrum, tell her to get out. The dressing room assistant would be standing there thinking how much of a brat I was.
But it was all in fear of my mother finding out.
We’d leave the shops not talking to one and another, and it would be like that for the evening. I used to shower twice a day because if the boil had burst the pus would leave this pungent smell that was so embarrassing.
I remember one day I was in school and had taken off my jumper. We had to wear white shirts as part of our uniform. One of my classmates asked me why there was blood on the upper arm of my shirt.
I looked down and went red. I told her I must have cut my arm shaving. I ran to the bathroom realising that an angry boil had burst.
I tried to squeeze the rest of the pus out but the pain was unbearable – it went all through my body.
I stuffed tissues under my arm, and that was the last time I ever took my jumper off in school. From then on I just learned to manage the boils with plasters and started wearing bras that were too small for me so the wire wouldn’t come up to my armpit. I wore t-shirts, long sleeves and cardigans.
One day, I was sitting in a towel after a shower and my eldest sister came into my room for a chat. Whatever way I moved she asked about the marks under my arm. I immediately felt under attack and told her to get out, so she pinned my arm up and looked horrified.
Being a nurse, she gave me a lecture about my weight and all the things I didn’t want to hear. Then my other sister got involved and my parents found out. I just felt like I wanted to be buried in the sand. I was mortified that my dad was talking about it. He brought me to a doctor.
I was nervous knowing that I had to get naked to show her my body.
She asked me to take off my top and hummed and haawed then said, “Right. It looks like you’ve got a folliculitis that is infected.” A prescription of antibiotics was given and I ran out. I took the antibiotics but nothing happened. I continued to avoid the issue around family members and just got on with life.
When I reached 6th year, I was going to every 18th party I could; any opportunity to get out! This particular night I was wearing a much shorter sleeved top with a net design so you couldn’t see the boils or the purple/red scars.
I noticed this smell had followed me onto the dance floor and I thought it was the guy next to me – he hadn’t showered! The smell was offensive and was literally making me queasy.
I asked my mates if they could get it but they hadn’t a clue what I was on about. Then I realised that the smell was coming from me. I sniffed under my arms and I nearly heaved. I remember bursting through the crowd to get to the bathroom.
I discovered that there was a hole in my armpit that was green and the flesh looked as if it was rotting.
I just left the party. I told my sister and parents, and I was brought straight to the doctor. There I was told it was due to my weight and that I was probably a diabetic. I just burst into tears. I was brought in for a fasting glucose test and put on a restrictive diet.
I felt like shit and looked like shit.
Finally, I was booked into another clinic to see a different GP. He was so caring and understanding, and said it looked like I had Hidradenitis Suppurativa – I looked at him as if he has 10 heads. He printed out an information sheet and referred me to the HS clinic in Tallaght hospital.
After 3 referral letters in two years, I finally got an appointment.
I was nervous and I didn’t know what to expect. When I was called in there were 3 doctors in the room ready to examine me. I had an extensive examination that required bloods, swabs and a long list of questions.
They were the most caring and empathetic people I have ever met; they made me feel normal. I had to wash myself in Hibiscrub (a scrub that medical professionals use). I was on Clindamycin and Rafpamincin for 12 weeks, very strong antibiotics. On my second visit, I had more examinations and continued on the antibiotics. As soon as the treatment was over, the boils cleared.
I felt a new lease of life.
In January 2016, I made a serious lifestyle change. I was at my heaviest and was not happy. I knew I had to change my diet and the way I lived if I wanted to keep this condition at bay.
I was breathless going upstairs and I felt bloated. My periods were getting heavier and I knew I was headed for PCOS or being Insulin resistant. I started going to the gym – completely out of my comfort zone as I was so unfit. I changed my diet and I saw the scales moving as well my body changing.
I felt a new sense of confidence. Summer came and I decided to wear tank tops in the gym. I didn’t care what scars were on show. If people stared I wasn’t afraid to tell them about my condition.
I learned to love myself and to no longer be ashamed of something I couldn’t control.
It took years for me to think this way.
Unfortunately, I then had one bad outbreak under my left arm. I went to Tallaght to get it checked out as it was not healing. They suggested that I be put on Humira ( TNF BLOCKER) which would suppress my immune system. Before that, I had to get a chest X-ray which showed inflammation and scarring on my trachea, so I was then sent for a CAT scan.
The CAT scan came back less severe than they thought. They believed that my fitness levels helped me hugely. My arm started to heal and thankfully, there was no need for the Humira.
Since then I have lost 28 kg. My skin still has the odd flare up but it is well managed.
“It’s amazing what a positive mind and a good lifestyle can do. Never be ashamed of your imperfections, they make you who you are”
So what is Hidradenitis Suppuravita?
Hidradenitis Suppuravita is a rare, long-term skin condition that features small, painful lumps under the skin. They typically develop where the skin rubs together, in areas such as the armpits, the groin, between the buttocks and under the breasts.
The lumps may break open and smell, or cause tunnels under the skin.
Hidradenitis Suppurativa tends to start after puberty. It can persist for many years and worsen over time, with serious effects on your daily life and emotional well-being. Early diagnosis and treatment can help to manage the symptoms, keep new lumps from forming and prevent complications, such as scarring or depression.