Hello, my name is Mercedes and I’m a twenty four year old woman who was diagnosed with HS three years ago. I think it would be nice to have 1 day where I don’t have to worry about a disease that completely controls me.
This is my story:
I was sick for four years before being wrongly diagnosed with a Staph Infection. After some testing though, I received the official diagnosis of HIDRADENITIS SUPPURATIVA, and it’s become such a big part of my life that I can now spell it without even trying!!!
HS feels like the constant and annoyingly painful sensation of a knife being stuck into my flesh, then being twisted with every move I make.
If it was not for this condition, I’d have more confidence in my body and I wouldn’t be so ashamed to wear a bathing suit or even lingerie. It would also be nice if I did not have to constantly be on guard, checking everywhere every single day for the first sign of a flare up.
Several doctors have told me to stop shaving my under arms and to stop wearing deodorant. I still do it though, and each time I have horrible flare ups. It’s the sacrifice I make to (sometimes) wear tank tops in the summer, but I haven’t worn a bikini bottom in years. With so many scars in my groin area I always wear shorts over them.
I’ve tried various treatments like antibiotics, soaps, creams and of course, the dreaded incisions and draining. I have also had surgery because of my HS, and it was way more successful than I thought it would be. My recovery time wasn’t even very long at a week or so [but there are still some tender areas when I have monthly flare ups].
I was due to have a second operation, but on December 7, 2015 I started Humira. I think it’s already doing something because I haven’t had a bad flare up this month. This is my first month without an abscess in about four years!! I’m still seeing some issues in the groin area, but everywhere else is clear so I’m keeping my fingers and toes crossed.
In the past, I have felt too embarrassed and ashamed to talk about my condition. I felt that no one would ever understand what it is or what it felt like to have. I have always felt “gross” and that maybe the HS was my fault. Through awareness spread by pages like yours, living with HS has become a little more manageable. Thank you.