Glad To See I Am Not Alone

Hi everyone,
I have been suffering from HS for over ten years now. It started in my mid to late 20's. I really don't have an exact memory when I first noticed it. I have never thought about joining a support group and happened along this site while trying to do some research and see if there is anything new as far as curing this. Living with this has had a major affect on my life. I feel I have a high tolerance for pain and have only missed a couple of days of work. When I do get flare ups, it can be so painful. Another thing is the stress that works with working in sales can do to me. At the end of every month I am stressed to make my quota and I occassionally get some brutal flare ups. It really makes me depressed and I have told hardly anyone because I feel ashamed and embarrassed by it. I have also felt many times not worthy of having a girlfriend or wife so I don't even put myself out there anymore. It makes me feel like who would want to put up with that. Every doctor I saw for years could not tell me what it was and how to treat it other then to lose weight. Finally I was diagnosed with HS 2 years ago and was referred to a dermatologist. The dermatologist looked me over and the first thing he says to me is,"Yes HS is what you have but its a mild case"
I said,"You live with this you jerk!" He did mention laser hair removal but that is pretty expensive and I am not a millionaire. Basically seems as though I am stuck with this. Fortunately I do have a great sense of humor and try to spend my time amusing myself and other people with humor. But there isnt a day that goes by that I don't think about or deal with the symptoms of HS. Everytime I walk by the mirror on my way to the shower I see the scars. It's terrible. I wouldn't wish this on my worst enemy. Reading some of your stories showed me there are a lot of levels of this illness too, and some of your stories were so sad. I couldn't imagine having it worse then I do now and I hope it doesn't get worse. I hope a cure can happen someday so I can get my mojo back. Everytime I go on a date the first thing I think of is will they put up with the HS. Everytime I end it within a few dates because I don't think they would be cool with it. Well I am glad I found this place and live every day to if fullest.
Jonny O
jonnyo73 jonnyo73
36-40, M
2 Responses Jul 30, 2012

Hi jonny073. I know exactly what you're talking about. Every time I have a flare up (6 years now), I can't see the light of day for the pain and embarrassment of right now. If I hear one more doctor dismiss my HS as negligible, I'll scream! Hearing your story makes me feel not so alone.

Hi I have been living with it for 30 years now, but there is a researched study that is being conducted right now in the usa in many states and I have joined it. They are using the drug Humera and it has change my life. I see excellent improvement with the drug. It does have side effects, but I haven't experience any yet. Take Care