Newly diagnosed, in need of advice

The best advice i can give is listen to your body. I went through years of different antibiotics and immunosuppressants all gave me horrible side effects. I am now looking into changing my diet since i have read up a lot on it and it has worked for some. My doctor wasnt happy i stopped taking the meds he had perscribed but i couldnt see taking stuff that was just making me sicker and wasnt working. So once again listen to your body As for how you tell your family. I fully understand it is a humiliating disease. I have had it over half of my life and it is not easy. I have chosen not to tell everyone but a few i knew would understand. Talk to someone you trust and get it out. I held it in for many years and talking about it has helped. I would also say do a lot of research and see what works for you there are a lot of different things that have worked for different people and i am noticing it all goes back to food allergies. I am in the proscess of taking my life back from it at the moment without my doctors. that being said you do need to be looked at and make sure you dont get infections so please dont take it as i am saying doctors arent needed just remember there are treatments that have worked for people without taking nasty medications that the bad outweighs the good. Keep your chin up  

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!

Hey,

This sucks I know. I'm 20, and have had HS for about 5 years, though I've never actually made it to the doctors, I'm ashamed to say, v scary. I can sympathise with your fear of telling people; my best friend of 12 years doesn't know, only my Mum. Also, intimacy is a big problem, especially for those of us dealing with groin break-outs, which is lovely.

A year ago I hit my lowest point, eating everything, becoming withdrawn and basically being p*ssed that I had got landed with this body. However, I read up on the autoimmune side of things and decided to go on an elimination diet that I strongly recommend. You basically cut out anything that may be harmful and add them back in one at a time to see what is your trigger. 

I started out hardcore, literally eating meat and some veg only, but now thank God I've managed to zone in on my triggers. For me, it's nightshades and dairy, although I think there is something else in my diet that is probably contributing. At the start of this year I had open sores on the inside of my leg almost constantly; very painful. The summer before I had gone on holiday, unwittingly eating about 3 tomatoes a day and being hot with the worst breakouts, hardly walking and defo not getting into a swimsuit. It's a horrible thing when no one gets why you're being such a downer.

I don't want to give you false hope: I still get break outs, mostly in time of stress, or sometimes just out of the blue, which is pretty annoying when you're following a diet religiously. But my most mayor sore is now a scar, and that scar is healing! I don't know how long it will last, but it's something. 

Looking back to the scared 15 year old me, I don't want anyone else to feel like they're alone in this: you're not. There are so mant things you can try: tumeric, antibacterial soap is a goodun for me, diet change, exercise, more sleep and relaxation. It takes ages, I think it'll be another few years till I've worked it out for my body, but sometimes it's just such a relieve that we are not helpless and have some kind of power.

Sorry for the ramble, truly hope it works out for you.