Glad to hear from you: i was beginning to think i was alone on this...(feel free to send me a pm if you want)
Sorry to hear you have the HS, and for 12 years. As i posted earlier, i have had it for ~3 years now, but i have had a similar condition, called pilonidal sinus (more or less the same symptoms as HS, but the pilonidal sinus is usually confined to the backside/buttocks area). I have had the ps for ~20 years, and have had about ~6 operations on the backside over the year- i generally get a year or two free after surgery before it reappears.
As for my HS, it arrives with a bang and quickly proceeds to stage II/III. Generally speaking, by the time i get to see my derm or GP it has progressed so far in that time, that surgery is about the only option available to me.
So the only treatments i have received are antibiotics (for generally 3-6 months), and surgery. I found that the antibiotics were useless for me, even trying many different kinds.
The only other things i try would be frequent baths/ showers etc. I have gone from salt baths (for the ps) to mild antipsetic baths, and i now use te-tree oil in the bath. Not sure if it makes the slightest difference, but you do feel 'clean' afterwards.
As for me, i am a 35 yo male, not overweight or even heavy although i did put on a few stone just prior to the HS arriving in the first instance.
As for the surgery on the armpits, well it is not so bad or too sore. For the left armpit op, my surgeon did a skin graft (from my thigh) and first time it was successful. Getting dressings done every 2-3 days for ~6-8 weeks after surgery is the worst part of it. I also had to wear a splint and my arm and needed a bit of physio after that. So far so good though - i had this operation about 2 years ago and it has not reappeared there since- fingers crossed. In total, i spent two weeks in hospital, and called back afterwards every few days to get the dressings done.
The second surgery (on the right armpit) was a lot more problematic though - the graft (from my right thigh) didn't take well and i kept on picking up infections at the wound site, so that slowed healing down (6-8 weeks first time infection free; 2nd time, with infections, i was getting dressings for 4-5 months afterwards). To top it all off, the surgeons team kept on denying i had picked up an infection, so i had to frequently visit my gp to sort it out (plus the cost of each trip to the gp). This was done about 1 year ago and a few new lesions have just recently appeared in the area. Again, i spent about 2 weeks in total in hospital and called in to the clinic frequently afterwards for dressings
The 2nd surgery was a trial, overall, and i have reluctantly agreed to a third in the groin area. I have sfa other options open to me at this stage i think.
If you want to know anymore about the surgery, feel free to ask - the only really sore part for me was not the wound itself but the area from which the took the graft on the thigh - that hurt like hell, and itched a lot (they had my thigh bandaged heavily for ~10days - 2 weeks after the op). After they took the bandages off the graft site it was fine.
Like you, i too feel absolutely devestated by the appearance of the HS in the groin - i have about half a dozen lesions in the area (with a few on the scrotum) and they appear to be spreading quite rapidly. I find even going for a short walk hell now- by the time i get home it is a 'bloody mess' down there! So i hop straight into the bath and the tea tree oil..
So, no, never tried the roaccutane- how have you found it overall?