Hidradenitis Suppurativa Support Group
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...
Hi everyone, I'm 18 years old and I've been suffering with HS for 4 years but diagnosed probably 2-3 years ago. I had no idea what the boils were when it first started but then it progressed and I eventually had an incision & drainage on a painful boil in my right inner thigh. Let's just say the experience was not pleasant and I thought I would die right there in the urgent care office. Eventually those boils in my right thigh decreased and completely went away in February 2015 (no sinus tracts or lumps, just an ugly purple scar). My left inner thigh is the problem now. This leg has a sinus tract (just one, thankfully) that runs from my groin towards my lady parts. My derm won't remove it because it would be very debilitating and surgery isn't a guaranteed fix.
My HS is pretty mild compared to other people as it's contained to a 2-3 inch area in my left inner thigh. I did have an outpatient surgery done in my derm's office in Feb 2016 to remove the cystic yucky stuff but unfortunately, I still had flare ups even during my recovery period (pus coming out through my stitches!). The nurse did take a swab of the pus and it came back with a no bacteria report (no surprise). So I was back to square one with a boil popping up every time the one before it closed up. It was horrible.
Eventually I discovered turmeric. It did help make my flare ups become less huge and the wound would close faster instead of leaving a gaping hole in my leg. I had my last flare up in June 2016 and was in remission until about one week ago :( My HS came back with a vengeance on my left inner thigh and now its the size of a ping pong ball. Lovely. I put ichthammol ointment on it an hour ago so I will let you all know how it's doing.
I'm just sad that its come back after a year of freedom. It was a great year too. I think I let myself go a little and cheated on my diet as well as the summer humidity in Florida does not help. I did cut back on gluten, eggs (major trigger), and processed foods, which did help. This time I believe I ate too many nightshades (tomatoes and potatoes) and then sweat clogged up my pores in the crease of my leg, causing the flare up. I also noticed a hard lump of leftover cystic (tissue?) that my derm did not get out during the surgery last year. So here I am, desperate to get this giant alien off my leg because it is SO difficult to move around. Even tossing and turning in bed is super painful.
I'm still not 100% sure what my diet triggers are but I know sweat is a factor. I did have bad acne once puberty hit and I went on birth control to lessen it (helped tremendously, not so sure it helped HS though). My gyn also told me that I have elevated levels of testosterone and considered giving me spironolactone but at that time I had no clue it could possibly helped with my HS. I might go back and talk to her about it. My dad also has mild HS but on his backside for over 30 years, so genetics could be playing a role.
Thanks for listening (reading?) to my rant! I've been reading these forums ever since I had a definitive diagnosis and it's given me optimism.