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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@hstrust.org. Stories from previous months can be viewed using the links below this months story. (Unfortunately we cannot guarantee that every story will be published. Stories will be published as received.)

This Month - Sheryl tells of her experiences with HS.

I have suffered with HS for around 12 years. This is my story.

In my late teens early 20's I had recurrent episodes of tonsillitis, after a few years it became a monthly problem so I was referred to the hospital to have my tonsils removed. The operation was a success it was great!

However, within 6-12 months I noticed a large cyst/lump in my groin area. I went to my Gp who prescribed a course of antibiotics. The cyst/lump was very painful and made it difficult to wear underwear, sit, walk. Eventually the cyst burst and lots of thick puss was released. I was left with a small sinus hole which lasted for months. Another cyst/lump appeared within the same area and resulted in another sinus. This also lasted some months. I went to see my nurse as I was concerned the sinuses were not healing. The nurse inserted a probe into the sinuses to see how deep they went. They were shockingly deep and seemed to be joining. The sinuses leaked constantly and I was referred to the hospital. I had surgery to remove the infected tissue and I thought this would be the end....how wrong I was! The wound took months to heal and required daily dressing and packing. I returned to work after 2 weeks but the wound reopened and I had to have more time off. Eventually after 3-4 months the wound healed. Within a year a new lump/ cyst appeared on the opposite side of my groin. The story was identical to before and further surgery was required. I was then referred to a Dermatologist and was prescribed long term antibiotics after being diagnosed with HS. I couldn't believe I had not been prescribed these before the decision to have two lots of surgery which left awful scarring.

Over a period of 4-5 years I was prescribed Doxycyline, Clindamycin, Minocycline MR which each gave me some relief for 6-12 months at a time but eventually I became resistant to them. I was then prescribed Rifampicin+clindamycin combination. This was effective for 1-2 years with only occasional flare ups. Eventually I again became resistant to this treatment too. I was given steroid injections and prescribed Acitretin. This was a tough decision as you cannot become pregnant while taking this medicine and not for 2 years after stopping treatment. But I was desperate to find some relief from this condition so I decided to give it a try. The side effects were awful! I lasted around 3 months and went back to see my Dermatologist and asked to go back on a previous treatment but he said I needed to give the Acitretin longer. I had also had a flare up of facial acne which was making me not want to leave the house it was so bad. Eventually my Dermatologist agreed to switch me to Isotretinoin-Roaccutane which is an acne treatment but he explained it could also help my HS. My acne cleared up within 3-4 weeks, the side effects were less and were tolerable after 6-8 weeks. I am still taking the Roaccutane, I am never clear of the HS and my flare ups seem to occur every 6 months. This also seems to coincide with cold/fly symptoms and when I am run down.

When I have a flare up I also take a course of Erythromycin, and I find Inadine dressings help once the cyst has drained. I currently have a few sinuses which seem to never go away. At my last appointment I was also given steroid injections into the sinuses which was very painful but helped with the inflammation and pain. I use Eczmol wash and Dalacin or Fucibet cream when a lump appears. Cetirize taken at night also helps when the area is itchy, hot and painful.

I have recently seen an episode of "Embarrassing Bodies" where a lady followed a low GI diet to help with her HS and I am giving this a try.

I have been very lucky to have a supportive and understanding partner who helps me not to get too upset and down when the condition flares up. I never thought a relationship would be possible as I was so self conscious of the scarring and the awful unsightly lesions.

In the last few years I have noticed a greater awareness and knowledge of this condition and I only hope this may lead to better treatment research and maybe even one day a cure!

I hope by sharing my story it will help someone else understand that they are not alone and not to suffer in silence.

Sheryl aged 33.

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