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,...
21yr old Male here.
I was just properly diagnosed with HS today lol, but I've had the occasional boils between my thighs now for 3-4 years. My GP sent me to a dermatologist next week. I have been freaking out like crazy, but my GP says its not something to worry about, especially as mine is really quite mild (definitely stage 1)
I just wanted to ask you guys some questions...
a) Has HS affected your personal/professional lives?
b) Has HS stabilized as you got older? Or has it kept on getting worse?
c) What kind of treatment have you sought?
I was just properly diagnosed with HS today lol, but I've had the occasional boils between my thighs now for 3-4 years. My GP sent me to a dermatologist next week. I have been freaking out like crazy, but my GP says its not something to worry about, especially as mine is really quite mild (definitely stage 1)
I just wanted to ask you guys some questions...
a) Has HS affected your personal/professional lives?
b) Has HS stabilized as you got older? Or has it kept on getting worse?
c) What kind of treatment have you sought?
I'm 40 and had it since about 18 or so too. There are lots of things I'd tell my younger self.
I've been to doctors and dermatologists, all well recommended, some just give advice on cleanliness and suggest swimming (useless), some convinced they can beat it with drugs (bactrim, roaccutane). I've had boils taken out of my neck a few times and it's not trivial, multiple surgeries, they just come back but can be beaten.
Where would I start... firstly... mine began in the groin and seemed to disappear from there by the time I was 30 when my armpits became the centre of attention and also my natal cleft.
I found trunks (not briefs and not boxers) to the be the least irritating). When they come up you can irritate them and they last longer. Cotton and not polyester. Same if it ever comes to your armpits (no polyester). Also try not to let the ooze spread or be left uncleaned, use some antibacterial (iodine or tee tree oil) on the wounds... you can also wash them with chlorhexidine wash. I general avoid soap and use something like pinetarsal or QV Wash.
Don't shave in the shower... the little hairs will trickle down invisibly and can irritate or block a follicle.
If ended up with a huge one on my bum and thought it was like the rest but they are called pilonidal and can be removed. That's not fun.. so you'll really know if you ever get to needing surgery.
Don't squeeze them ... hehe he I squeezed the heck out of mine. You will damage the surrounding tissue and make them worse. I know you're going to do it... who doesn't. But just keep in mind.... not good... you can push them further into the tissue and leave more tracts that you'll have still at 40 ;)
Smoking reduces blood flow and they will take longer to heal (80% of HS sufferers were smokers). Stopping smoking doesn't make them go away... but it slows them healing when you smoke (tobacco).
Lastly... they say casein in milk and IGF can put this disorder in motion. I'm a huge milk drinker... so I don't dispute this... however... for me... milk alone does not cause an outbreak. It's potato and paprika... 12 hrs later when it hits your gut I will get a new sore or old ones inflamed. Really I've been on and off over the years eating mostly badly sometimes done a full health kick for 6 months and nothing really helped. But I finally realized even when I was on a health kick (juice only) I would still be eating tomato, potato, capsicum and chilli (nightshades).
Maybe keep a food diary... you could tolerate a little bit of everything, but take special note of what you ate 12 hrs before a lump or inflammation... did it have paprika... potato... (chilli, eggplant... and nightshades). It affects me 12 hrs after consumption and last 7-14 days.
Some people blame leaky gut... also related to IBD. For this I started taking probiotics and feel they are helping.
It's so up and down, but I think in your coming years they are going to crack the code of what's causing this.... I don't know if I would have listened to me at 21.... but 20 years of it mate... and I promise for me... it's potato, paprika and nightshades. If only someone told me that. I do love the chips and wedges too... now just not worth it