> Hidradenitis Suppurativa > Stories

A Hidradenitis Suppurativa story

It started in 2003 when I got a pilonidal cyst that had to be surgically removed. For the years after, I would deal with flares starting from my thighs and the back of my neck and eventually around the armpits, breasts and leg creases. I was too scared/embarassed to see a doctor about it for many years.

Eventually I went to a clinic when my neck got very bad. The nurse brushed me off saying I didn't bathe well enough. I didn't go back to another doctor for a couple years again.

Eventually I saw a dermatologist who diagnosed me with HS. Treatments I was given weren't very effective, but just having a name for the disease was very helpful. I had stressed over it for years, wishing I could figure out what it was and if other people had to deal with it too.

As I learned more from internet resources and people from online support groups, I find things that occasionally work alright for me. Vicks VapoRub on a flare to soothe it and help it come to a head, Tea Tree soap to cleanse, keeping an eye out for diet triggers (nightshades for me), ointments and creams to try. I still learn more as time goes on, and find things that help a little bit.

Nothing has cured it, but anything that can lessen the severity and length of flares is a win in my book.

World map of Hidradenitis Suppurativa


Find people with Hidradenitis Suppurativa through the map. Connect with them and share experiences. Join the Hidradenitis Suppurativa community.