I'm 35 years of age and I suffer from HS. It was going on for many years before I actually had a diagnosis, visiting doctor after doctor and being given antibiotics after antibiotics with no solution or anybody to really tell me what was wrong with me.
I had doctors thinking I had STD's and quite often I had often thought that it was some form of cancer.
It was hard to tell anybody at first, I was too embarrassed and then it got to a stage where it just got worse and worse so I didn't care who knew, the more people I tell the more likely someone will have heard of a similar condition.
A couple of years before I had the diagnosis I had an operation for a pilonidal sinus, it left a large open wound on my buttox which had to be cleaned regularly by nurses and left me out of work for 10 weeks. Doctors/nurses never once mentioned HS to me at this stage.
Eventually it got to a stage where the recurring abscesses where becoming a bigger problem, often days I couldn't walk, couldn't go to work, couldn't exercise, couldn't have sex, couldn't do the most simple tasks even, going to the shop, going to the toilet was a struggle. I could get the smell, they often burst in awkward moments, at work, out for dinner, playing sports etc. Puss ousing under my arm, around my groin, I would always have to have spare boxers with me and always have some kind of deodrant too, even if there wasn't a smell, I had become paranoid that there was.
I got the abscesses under my arms, around my groin area and between my anus and scrotum, I also had them behind my ears and developed on my face as well. I have scars in all these areas.
I was always fairly fit so I would like to dispell the idea that this only occurs to people who are overweight. Nearly 6ft and weighing 13 stone, heavily involved with sports teams and trained 4/5 times a week.
When I first got the diagnosis, I felt a complete weight come off my shoulders, at least I knew what it was, it took away the uncertanty away and that I wasn't loising my marbles.
I found an article from someone who had written about it in Ireland, which is where I am from. I was able to get in touch with him and found him to be extremly helpful and he definitly put me on the right path.
From there, I got in touch with a HS specialist, who confirmed I had HS, I could tell from his facial expression that it was fairly bad, a couple of seconds later that was confirmed, stage 3 (hurley).
Ok, treatments start, nothing is working, however I'm assured there are many paths to try.
Currently I have been on Amgevita, injecting myself once a week. Its definitly helping but also has not cleared up totally.
I am optomistic though and i'm in a far better place now than I was when I didn't know what was going on, even though I have had to give up my last few years playing the sports that I love and have played all my life.
It still baffles me how doctors/nurses don't seem to know about the condition!!!