When were you diagnosed with your disease/condition?
I was diagnosed with hidradenitis suppurativa (HS) sometime around 1989 or 1990. However, I have suffered with this disease since 1978, not including the pilonidal cyst I had as a teenager.
When and how did you find out you had the disease/condition?
Looking back, now I see that the pilonidal cyst may have been the first of many cysts which are part of the progression of HS. The first huge cyst that appeared on my upper thigh during the summer of 1978 was treated as a boil. The local doctor cut it open (without any local anesthetic), drained it a bit, and covered it with gauze. I was told to put black salve on it, to wash more frequently, and to stop wearing jeans. Since that time, I have had HS cysts come and go under both arms, on both upper thighs, in the panty lines, in my C-section scar, under my breasts, on my face (2 days before my wedding), on my labia, and on the crack of my buttocks. I am at stage 2 or 3 with scarring and sinus tracts.
How would you describe your appearance?
I have always battled with my weight, but was only 5 to 10 pounds overweight at the time of my first outbreak. I am now severely overweight, and suffer from many of the symptoms of hypothyroidism as well.
What kind of education and support were you given at the time of your diagnosis?
None. The doctor who finally did diagnose HS is a wonderful woman, who put a name on these recurrent “boils” or “cysts.” She told me that this had nothing to do with cleanliness, and she treated me with respect and efficiency. When my armpit became so inflammed and unresponsive to injections or antibiotics, she referred me to a surgeon, who performed an I & D with packing.