Hello everyone! My name is Amanda and I’m a 28 year old woman with HS disease. It’s a very embarrassing condition that definitely lowers your self-esteem. This is my story…
I was 23 when my symptoms started, and I received my diagnosis pretty quickly since I already had a good relationship with my dermatologist. I had cystic acne that I had almost cleared up with Accutane before my HS started.
Just recently I quit my job as a preschool teacher that I had been doing for over 10 years. I’ve had a hard time teaching because of missed work due to pain, being sick, and flare ups. It has been difficult teaching because you are on your feet the whole day constantly picking kids up and being mobile. When I have flares, they would pop and leak and interrupt my work and cause me pain and embarrassment.
Also, my immune system has been so much worse with HS I was sick almost 24/7 with everything the kids had, no matter what preventative measures I took.
The pain from HS is pretty intense. It ranges from the painful rubbing of sores and bumps to the stinging and itching of open sores and wounds. One of the challenges of living with it is waking up and having blood/pus on your sheets or clothes from a burst flare. Even worse is when it happens in public and people can see or smell it.
I’ve been trying on clothes in a store and all of a sudden one bursts or bleeds over the clothes when you didn’t even think it was active, it’s very frustrating! I am also very self-conscious when wearing swimsuits or clothes that show off the areas where I have HS. Same with meeting guys, it’s embarrassing and many of them don’t understand or don’t care to understand.
To manage my HS I take Spironolactone which seems to help somewhat as I flare badly around my menstrual cycle. It’s basically a high blood pressure treatment that also blocks male hormones in the body. I take a low dosage as I do not have high blood pressure, and it has seemed to help a lot. My flares are very intense around my cycle so my dermatologist decided to give this a try.
In the past I’ve had steroid injections in particularly bad flares, tried dozens of antibiotics and birth control pills, and have had surgery in both armpits to clean out the flares. The antibiotics didn’t seem to help, and they made me sick.
The steroid injections definitely helped my larger boils and flares go down, but it did not get rid of them entirely. When I had surgery in my armpits, it helped a great deal for almost a year. I tried birth control pills for a short time also, but they made my HS 100% worse and more painful.
I also spend time swimming in my gym’s chlorine pool which seems to clear them up as well as tanning sparingly.
My life would be very different without HS I think. I enjoy working with children in my career, and HS makes it very difficult to be able to be positive and be physically active while at work. I’d have more self-esteem, more energy and be able to do the things I love more like exercise. Whether at the gym or just enjoying a walk the flares rub and cause me a lot of pain. Also with HS, It makes me not want to go out in social activities because of the possibility of pain, a flare up, or leaking.
Currently I’m in stage 2, but have slowly gotten worse as time has gone by. If I could grant a person newly diagnosed with HS a wish for their future it would be to not give up hope, even when things get rough.
Also that someday there will eventually be a cure for HS!