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 - Kim tells of her 30 year experience with HS.

The first time HS reared it head was 1979, I was 19 at the time, living with parents, working full time, no weird health history, except I was prone to getting boils as a child, developed Eczema in my teens which stopped abruptly at 18. Not long after, I developed a pea size lump in my right groin. It was very sore and got bigger quickly. My GP dismissed it as a gland, and callously told me to go back when it was the size of an egg. A week later, when it was the size of an egg, my parents took me to the ER as I was in so much pain I could hardly stand. The doctor took one look and took me in for immediate surgery, he said I had a very bad abscess and it needed taking out at once. It was agony, I had the wound packed daily until it closed. Thus began the journey. It was as though the one abscess kick started the whole HS process. I was never free from them after that, one after the other, sometimes more than one at a time, each time they wouldn't burst and ended up having these mini operations. I was beginning to get scarred to hell, nothing ever quite went completely I was spending nights knelt up on the bath with the cold shower spraying me the pain was so bad. After around a year, my parents insisted I see a specialist, I saw a dermatologist at my local hospital, he didn't give a name to what I had, but said he could cure it with tablets and that he didn't agree with surgery, and he was a horrid little man.

After about a year of getting worse, numerous trips to the doctors/derm/hospital I was at my wits end. I was taking time off work, I had by then met the guy I would later marry and being intimate was beginning to be problem then although he was really good about it looking back. The situation was starting to really get me down, my parents were worried sick, I am an only child and close to them so they were at their wits end at all the pain I was in at such a young age. Some time later I was given the name of a derm at Leeds Infirmary, Mr Cunliffe who had a very good reputation. I can remember every word he said to me as if it was yesterday (this was 1983) he was such a lovely man, gave me a good examination then said "right Kimberley you are an intelligent lady and I am going to tell you the truth" you know when people say their life flashes before them in a crisis, this was mine, "its cancer isn't it" I asked, he chuckled slightly and said "oh no no dear you have a very chronic, very rare disease called Hidradenitis Suppurativa.. It is a miserable disease and there is no cure but it isn't life threatening". Some people report on how bad they feel when they are diagnosed with this disease, not me I was thrilled to bits, Once we had established it wasn't cancer and wouldn't kill me I didn't care, I was so sure this disease that seemed to be eating me alive would eventually be the end of me. I was immediately brought into LGI on a regular basis, he did so many tests on me that I lost count, tried every drug he knew could help, was constantly an inspiration, even though no matter how he tried nothing made it any better. During my twenties I was literally never free from pain, my first marriage ended (not HS related) and I think the stress of the whole situation just gave my HS the kick it needed really to bring me to my knees. I married again to my current husband in 1987. I had known him a long time and the HS think didn't seem to phase him (he certainly has been a good hearted man in that respect). Doctor Cunliffe was quickly running out of options for me, he was involving me with his research student, doing grease tests on me you name it. He never recommended surgery as he had always maintained it was very drastic and I could be in hospital for a year. (the techniques were somewhat different then). A few things happened all at once around 1988, I found out I was pregnant, not planned, but after 3 months was looking forward to being a mum even though I have never been maternal (only with animals). I had three months of hell, it nearly brought me to my knees yet again, I was one mass of inflammation and infection from labia to back passage it was getting horrific. I went to the doctors who advised if I didn't take anti`s I would end up in surgery which would be a lot more harmful to my baby than antibiotics, so I agreed to take them.

Maybe a coincidence but I miscarried the week after and always blamed my self. The miscarriage itself was made a thousand times worse with the HS being agony, as anyone who has been through this will know there is a lot of prodding and probing going on, I thought I would pass out with the pain, nurses were pulling faces and asked subtle questions like "God what happened to you". Not long after that I was dressing my wounds as I did twice daily for years, (always managed to hold down my job with this lot.. looking back I really don't know how), on this particular occasion I was wiping a weeping area when my fingers just disappeared into my skin, like something out of a horror film. It was just totally rotten. About 5" on both inner buttocks/groins it was getting totally out of control and the pain, leaking and smell was really taking its toll on me. It controlled what I did, what I wore (no jeans, tight trousers, fancy underwear). I was literally unable to walk from the bedroom to the bathroom without leaving a trail of puss on the carpet. I think I was probably at my lowest ebb ever then. I had been taking a new drug called Roaccutane, which was a miracle breakthrough for Acne sufferers, it frightened me to death as the side effects were so scary but I would have taken anything at that point. The drug did nothing, got a lot of side effects but didn't touch the HS. Over the years with doctor Cunliffe, I had been on Clindamyacin, Augmentin, Doxyxilin, Oxytetracycline,Lymecycline, magnapen,amoxacilin,Flucloxacilin,Eurathramyacin,minocyclin, spiranalactone, those are the ones that just trip off the tongue. In 1989 I went to see Dr Cunliffe but he was off ill, so I saw another derm called Dr Macdonald who I had never seen before. She took one look at me and just went berserk, she said "you cannot carry on walking round like that, that is totally unacceptable you need surgery as soon as possible", she then went on to tell me some home truths about just how bad I was and what could happen, basically frightened me to death., I knew my HS was heading round the bowel area and that was really worrying me.

I remember coming out of the hospital and bursting into tears, I was totally distraught. The woman was very matter of fact and direct and very unfeeling I thought. She told me to go home and think about it. Later that night to my astonishment I had a phone call at home from her, she apologised for upsetting me and being so direct, then explained all my options. She assured me sooner or later I would be having surgery there was no doubt about that, the way it was spreading through my skin, as well as tracking through my muscles was getting very serious and the longer I left it the larger op I would be having. She talked me into it in one phone call, maybe I was just at the end of the road with all the pain and misery. They booked me into the hospital for the following February under a surgeon called Professor McMahon who actually specialised in operating on these sort of skin diseases. They only wanted to remove one side as it was such extensive surgery but I insisted I wanted it all doing at once. That's what they did, they removed everything from the buttock area, and lower groins, I nearly died when I saw the wounds, they took 12" square of flesh in total, the wounds were so deep you could get a coffee mug laid sidewards in there. I didn't think it would ever heal. The wounds were left open, filled with Cylastic foam, which was a revolution in wound care at that time. I was in hospital 2 weeks, off work for three months and the wounds healed after about a year. I never had a minutes trouble with HS in that area since. Unfortunately (or damn unlucky as professor said) within 6 months of the huge wound healing, I had a rampant outbreak in my left groin, that spread like wildfire and a year later I had the radical surgery on that also. Another gaping wound another long healing time, again never came back in that area. The nature of HS being as it is, the disease has a way of finding new places to come. Having given medicine the benefit of the doubt for the years, I started using surgery as my treatment of choice. Very drastic but the results were good. Professor had the opinion (rightly or wrongly. jury still out on that one) that while ever it kept coming he would keep cutting. Over the last ten years the new outbreaks have lessened. My last surgery was December 05 when I had to have all my pubic area removed as it had started there and was spreading like wild fire.

I have decided to have no more surgeries, I have so much scar tissue that in itself causes a lot of problems. I still have problem areas with HS flaring as it has spread to near my vulva and the only way to get the rest of it with surgery would be to totally remove the whole vulva area, making my almost non existent private life totally non existent. So I just have to live with what’s left. The first large surgery involved removing muscles around my anus which has caused a life long problem for me on constipation, I have to monitor carefully my toilet habits as constipation has resulted many times in doctor/nurse visits. I would say my HS now is stage 1/2 depending on flare ups. It never goes away, never doesn't hurt but like most diseases it just becomes a way of life. Without the radical surgery I could not comprehend how I would be now. A good week for me now is to only wear a pad or dressing a couple of times instead of twice a day. The information on HS has changed so much since I was diagnosed nearly 30 years ago. I was told A) it was very rare.... we are getting around 2 new members per week on our UK support group B) There was a one in four chance of passing it to a child.............. This theory has been changed 1000 times C) I was told don't let it put you off having children by the time they are adult we will have cured it.................if only D) It will go after menopause................. Some sufferers only developed it after the menopause E) you can't get it before your periods start................. Some children suffer from it. F) Its Genetic.......... no one in my family has it G) Being overweight makes it worse................... many thin members are at stage 3. H) Poor Hygiene is to blame........... Most people with HS are fastidious with hygiene you have to be. On it goes. The assumption Dr Cunfliffe (Professor now.. just retired) had that it would be all cured by the time I had a child of puberty age was a sad pipe dream, the disease is getting more and more common, or people are talking about it more.

I do feel we are in a lot better place now, dermatologists are more aware of it now, and more and more treatments are available, albeit some are found by default as they were actually developed for other illnesses.

Although HS can be very distressing, it can be controlled to a degree, and I do think the future is looking a lot brighter for sufferers just starting with the disease now. Had the medical options been available when I was in my twenties I would like to think I could have avoided some of the surgeries and kept the disease under a live-able control.

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