Hi Lora,
Welcome to the HS family. I completely understand how you're feeling when it comes to telling your family and friends about this disease. It is embarrassing. The important thing to remember is that you don't have this because you're dirty, it isn't contagious and you might be surprised by how they react. My advice would be to just talk to one person at first, and then if you're comfortable keep on going. Make sure they understand that this isn't a communicable disease. My mom's a nurse, so she's the first person I told. She'd never even heard of it, but she was very understanding. Eventually I told my brother and found out that he'd been suffering from the same symptoms I had but was too embarrassed to tell anyone about it. Go figure. I was the reason he finally went and got a proper diagnosis, and I'm not ashamed to say it made me feel pretty darn good.
Like yours my HS started in my armpits and ten years later popped up in my groin too. As far as clothing, make sure you wear loose fitting clothing. I generally wear sleeves because I don't shave very often as it aggravates my HS. I do have some scarring, but most people don't even notice. I also wear loose fitting lady's boxers without elastic on the bottom instead of panties. Let your vajayay breathe.
As far as deodorant, I've tried dozens. Literally. Never wear anti-perspirant! Avoid the stuff like it's the plague. I use Sydelle's Sensitive Skin Deodorant. It's a bit floral for my taste but it does the job and doesnt aggravate the HS monster. A lot of my HS buddies swear by Crystal rock deodorant, but my pits didn't care for it, and there's a new deodorant called Ozone Layer Deodorant. You can get it off amazon. I haven't tried it but I have a friend with HS that has a love affair with the stuff.
Be careful when you shave, don't squeeze the breakouts, don't smoke, avoid alcohol and try to avoid sweating excessively. I swim for exercise so I don't sweat as much. Stress can also cause breakouts. I do yoga to help with stress and that seems to work.
Like Chez said in his review, diet plays an important role in HS. I found that nightshades (potatoes, tomatoes, eggplants and peppers) trigger my breakouts. I avoid them like anti-perspirant now, and I've been in remission for six months. Everyone has a different trigger, but gluten and nightshades seem to be the most common. I'd recommend an elimination diet to determine what yours are.
Doctors are great for a lot of things. But when it comes to HS they're mostly useless. If one of your cysts gets infected then you definitely need antibiotics, and if the same one keeps popping up over and over you may need to have it surgically excised, but otherwise they're not going to be able to do much, because there is no approved treatment for HS.
Turmeric supplements seem to help a lot of people. I take them for my facial acne now, not for my HS as my diet keeps it under control. Also when you do get a breakout, putting turmeric directly on the abscess will cause it to raise and drain a lot faster and helps prevent infection. Also, Hibiclens is great to wash your armpits with instead of regular soap. And speaking of soap, make sure you're using a hypoallergenic detergent like All free and clear. Avoid fabric softeners and use fragrence free dryer sheets.
Do your research. Don't just accept a doctor's treatment plan without asking tons of questions. Don't be afraid to talk to your doctor about the gory details. And make sure you have a support system, whether it's a family member, a friend or you could do what I did and find a support group online to talk to. It made all the difference for me. Good luck!
