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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. (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.