Brian, USA
I'm 53 and after 10 frustrating years, I finally have an accurate diagnosis, I have HS! In December of 2011, at age 43, I got a "boil" on my waist, left of center. Active for a few months, then in remission for almost a year. It would come back in the same spot for a few months and then back into remission for 6 or 8 months. It came back again with a second boil a few inches away but connected under the skin. Two dermatologists and a primary doctor, in Florida, over those two years called it a boil. They suggested taking more showers and changing clothes more often and prescribed different antibiotics and creams, which did nothing.
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In December of 2013, I had cellulitis on my left leg. I spent 9 days in the hospital, on several I.V. antibiotics, and almost lost my leg. A half dozen different doctors, and no connection was ever suggested between the boils and the cellulitis. And no correct diagnosis of the "boils".
In March of 2015 I had another bout with cellulitis on my left leg, 2 days in the hospital. A few different doctors, still no diagnosis of HS and no suggestion of the "boils" being connected to the cellulitis. Two dermatologists and four primary doctors, in Virginia, still calling them boils. Still making me feel like if I took more showers and kept myself cleaner that it would help. By this time, there was a cluster of “boils” on my left belly.
I was traveling a lot for work in 2016 and 2017, so I saw several different primary doctors and a couple of dermatologists in Virginia, Maryland and Pennsylvania. It was still just the cluster of boils on my belly, pretty much no remission anymore. All the doctors kept calling them boils or carbuncle, no mention of HS.
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In May of 2017, a boil appeared on the back of my left thigh, and I had lots of UTI's that year. I also started developing several small boils in my armpits. I went to a few different doctors in Maryland and showed them my boils while I was there, no diagnoses of HS, just more antibiotics and more speeches about taking showers and "make sure you use soap"...unbelievable!!
In January of 2020, a boil appeared on my left butt cheek, and it seemed to be connected to the one on my left thigh. It started to get very painful to sit and to walk. After a few weeks, I couldn't take the pain anymore, so I went to a surgeon in Virginia, to get it drained. She took one look, and in 3 seconds, she diagnosed me with HS! What a relief! A half dozen dermatologists and more than a dozen other doctors, including an infectious disease doctor, and I finally got my diagnosis from a surgeon.
Now its July of 2021, I've started wearing Depends adult diapers, just so I can go to work without having a huge wet spot on the back of my jeans. I've been reading everything I can find about HS. I wanted to go to a specialist after my HS diagnosis, then COVID hit, and the authorities made you feel like if you didn't have an emergency, you should stay away from hospitals and doctors' offices. I thought COVID would blow over in a few months, but after a year, I said screw it and started looking for a specialist. I found one dermatologist within a reasonable distance of my house, in Northern Virginia, that even mentioned HS on his website. I've been to him a few times now, and just found out that he only has one other patient that has HS, but at least he seems to know a lot about it. He started me on Humira two weeks ago. So far, no side effects, other than a UTI that I’m taking antibiotics for.
Some interesting observations... my cellulitis and all my abscesses have only been on the left side of my body. I developed HS a little later in life than most. I don’t know of anyone else in the family that has HS. I had psoriasis on my scalp for about a year in middle school, then it went away and has never been back. My older sister has had plaque psoriasis her whole life. I don’t have any other inflammatory diseases/conditions.