Hello my name is Carlo, I have been suffering with HS for over 26 years. I am 42 years old. My condition is getting worse day by day. I am to the point I can not hold a job, even dating is a problem. I have become a homebody. People who do not have it ask why? Well for one the pain is massive, imagine cutting your skin open and shoving a baseball in the wound and sewing it up leaving a pin hole for it to try an come out of.
Second is the drainage, mine never stops leaking ever. I was told by the mayo clinic my main hs section will never heal. so this is something I have to deal with the rest of my life. I have to change these bandages all day long every day even in the middle of the night, if i do not my clothes and my bed are soaked with blood and pus. And my main area happens to be on my rear end so sitting for more than a few minutes at a time is impossible.
Third is the smell, yes this stuff stinks. If my leak gets past my bandage which it does it stinks and i mean man it is horrible. It is embarrassing and there is nothing I can do about it. So needless to say I do not go out. I have not dated in sometime now as well. How do you explain this to someone? It is not easy. Most HS sufferers keep this to them selves but i can’t anymore.
And of course most people are skeptical and say there has to be a cure. Well trust me there is not i have tried every medicine, alternative medicine and every potion available and nothing! Of course i would like to get rid of this problem it sucks! Some people have mentioned why do you not get a skin graft? Well a few reasons. The first is my skin has this everywhere except for my face thank god. I have it in my armpits, groin, legs, and butt. There is literally no place on my body to graft skin from. It is literally impossible.
I took this quote from another HS site. I could not have said this better myself.
“It has been reported that as many as 80% of HS sufferers are diagnosed as clinically depressed. Depression is common amongst people who have to live in chronic pain. It can be treated with medication, but to cure the depression completely the reason for the depression must be removed. As there is no known cure for HS, this is not possible. “
Another quote from hs-usa.org.
Because of the drainage which may have a foul odor, fever and fatigue caused by acute inflammation and the physical restrictions caused by pain and skin deformation, people often cannot work, drive, exercise or even perform day-to-day tasks, and are ashamed to go out in public. HS sufferers may go through severe bouts of depression, avoid public and inter-personal contact, become sedentary and often overweight.
More people need to know about these problems. HS is not talked about enough so there are no studies to find a cure. I have seriously been to doctors that I have had to educate on the disease. That is pretty scary.
DOES HS HURT? Most people like I said just do not realize the pain. Some doctors have told me to take advil, etc. My case is so bad that does not work!
Abscesses may be as large as baseballs in some people ( I have this constant), are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in drainage, often leaving open wounds that will not heal. The pain is debilitating, pressure pain; however, pain occurs 24 hours a day, 7 days a week for HS sufferers during flare-ups, and is difficult to manage.