Have Your Say

Every month we will be featuring a story based on the views and experiences of a HS sufferer. If you would like to tell the world how HS has affected your life, then send us your story to mystory@ba-hs.org.uk. Stories from previous months can be viewed using the links below this months story. (Unfortunetly we cannot guarantee that every story will be published. Stories will be published as received.)

This Month - Rachel tells of her experiences with HS.

After reading Stacy's story i felt her pain. I was only recently diagnosed with HS, after so many years of going through the unsightly boils/sores, having very little confidence as i am left with many scars. At the age of 23 i am in a way lucky to have not gone through all that Stacy has. I suffered for a few years in silence, until the age of 19 when i finally reached the point where i couldn't handle the pain and unpleasentness anymore so i went to see my Gp.

That was 4 years ago.

I was given anti-biotics and cream, this did nothing to solve it. I was so embarrased, i had little confidence as it was with being a little overweight and this just sent my confidence to rock bottom. When i was 16 i was working in a nursery as a student and i lost my job because they said i had a hygiene problem. As you can imagine this felt like a kick in the teeth. It was down to the fact that i had a boil and as many HS suferers will know when it's burst it can give off a smell. Although at this time i had no idea what it was. Now my confidence was zilch! But learned to deal with it, and got another job in a different nursery that i held down for 3 years until redundancy struck.

After my first trip to the Gp i moved out of my family home, and i was suffering in silence once more. The boils/sores continued along with more scarring. At present it is mainly under my left armpit. Little on right and a few times on stomach and under my breast. I finally decided to go back to the doctors about it when i went to a friends house party and her mom had to help me, i was in a lot of pain and i had a boil that had burst, so she helped me to dress it. I've never felt more embarrased and my night was ruined.

So 2 years on at the age of 21 i went to the doctors, as i had moved, i had a new doctor. I was told i was just an infection and prescribed some anti-biotics. When it didn't clear up i went back, more anti-biotics. Again didnt seem to do anything. So i didnt go back. I didnt see the point. I felt like i was being fobbed off with anti-biotics. Surely by now they could see that it wasn't helping. I felt alone, I was too embarrased to talk to anyone about it.

Not long after turning 22 i thought i would give it one last try. I went back to the doctors, where i was referred to a dermatologist. I thought i had finally been heard as i was seeing someone who could help. The dermatologist mentioned it was HS, I had no idea what on earth it was. He gave me a leaflet which explained it was to do with sweat glands. He prescribed me 3 months supply of anti-biotics, lotion to put on at night and a soap. I was told to return to my doctors when i needed more, as i would have to be taking the anti-biotics for at least 6 months, and he would send a letter to my doctors with a plan b if it did not work. I started to feel like i was getting somewhere.

At least i did, I went to my doctor when i needed another supply, to which she told me that hospitals do not give out 3 months supply, only 2 weeks and i should have gone back to her then. At which point she dismissed me and i left the surgery a little confused, also slightly hurt as she had in so many words called me a liar. Another dead end. Surely someone could help me. At this point in my life i had become engaged to a wonderful man, who wasn't put off by what i had. Even though i was too embarrased for him to see under my arms, a man i will marry in 6 months time and i still feel ashamed of how i looked with so many scars.

The boils seemed to calm and i didnt go back to my doctor, until in January this year. I could feel a lump under my arm that was tender to touch. In a weird kind of way i was used to having pain under my arm. It was kind of the norm as for so long i was always experiencing pain. This time it was different, it wasn't a boil or a sore. It was under the skin. Reluctantly i went to the doctors, knowing full well i would be leaving with a prescription for anti-biotics. I pleaded with her that anti-biotics were not working, surely there was something else that could be done. She brought up the fact i didnt have any more anti-biotics after seeing the dermatologist. I explained again about 3 month supply etc. this time she did call me a liar. She took a quick glance, and referred me to a plastic surgeon to sort out the scars. Yes the scars are n issue but i was more concerned about the lump forming under my skin. Leaving defeated i had given up trying to get help and decided to just deal with it.

Until the following week, the lump got worse. It was getting bigger by the day, the pain was also increasing and i wasn't sleeping. At work a simple task of washing up was unbearable, i had to stop to put my had under my arm to try and ease the pain. My manager kept asking me if i was alright as i looked like i was going to be sick. I briefly explained to her what it was and she told me to go to the walk-in clinic to get a second opinion. I thought why not? So after work my partner took me there and i went to see a doctor who didnt know me from adam. She took one look, gave it a prod, which made me cry and told me it was an abcess. After calming myself down she prescribed some anti-biotics and told me to go to a+e the next day if i was still in pain. I breathed a little sigh of relief, it seemed like something so simple. Although nothing could of prepared me of the week to come.

The next day, as you can imagine i was still in pain so off to a+e i went. The nurse confirmed it was an abcess and that he was going to drain it to relieve some of the pressure. I sobbed my little heart out with the amount of pain it caused, squeezing my partners had so tightly. Afterwards the nurse told me come back if it got any worse. And oh boy it did. Two days later i had a golf ball size lump under my arm that had turned a purple and black colour. Back to a+e i went. They told me they would have to slice it open to remove all the pus. I had 4 injections of local anestetic, only it didn't numb as effectively as it should! Even writing about it is bringing tears to my eyes, recalling a memory i wish to hide. I felt every ounce of pain, it was unbearable, i was wriggling around, screaming and sobbing in agony. I just wanted it to stop. The surgeon put gauze in it to keep it open, the nurse dressed it and even after them leaving, 15 minutes later i could not lower my arm and i was still sobbing. I finally did leave to go home and rest.

Two weeks later i have healed nicely, I cannot wear wired bras anymore but i'd rather have that then to go through all that again. I know my suffering may not of been as harsh as others, but i thought i'd share my story. At the moment i have had no boils or abcesses return, although it's still early days. My arm is still unsightly, but in a way im kind of glad i finally have a name for what it is and after finding this sight i know i am not alone. I have also been trying an unorthodox route. Out of curiosity i went into a chinese herbal shop, and i am currently under going heat treatment. 20 minutes lying down with a lamp generating heat onto my armpit. I started this a couple days after having the abcess sliced open and i have noticed a difference. I'm also trying their infection tea, although not to drink, to wash my arm with and then with a flannel letting it soak into the skin. Even though it is quite a smell, there's no harm. Next they have advised i try a herbal pill to help internally. This i am yet to try. If it helps then why not? I know there is not cure as yet in the medical world. Maybe there is in a different approach.

Like i said there's no harm in trying :)

Rachel Hill, 23

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