I forgot to add that timing is an issue and going to the ER is as much of a pain as the HS itself...I just went this evening and they said it's a 5-6 hour wait and I had to pay for parking, etc...I'm nervous and scared to say the very least. Just want to know if they'll drain it or if I'll need a skin graft, because at this point the rapid growth rate is out of this world, and I don't have time or money to play games.

Oh man! I'm sorry you're in so much pain! Here's what works for me to help with the pain: pour 1-2 cups white vinegar in a clean bathtub full of warm water (use more if you have a giant tub). Hop in and immerse the affected area fully for at least 30+ minutes. Swish the water around the area every so often. When you hop out, pat dry. The vinegar helps kill germs and helps dry things out while the warm water helps soothe the pain.

Recurrence happens to everyone after the antibiotics. HS is not an infection (even though it acts like one). the hs lesions can become infected however. Many of us have found that our hs is triggered by different food groups. Stress and hormones can also be a factor (hello bridezilla). To figure out if food may be a trigger you do the AIP or autoimmune protocol diet (or a modified version of it). You have enough time before the wedding to do this. And potentially find relief. The modified version is easier so I'll throw that one out first. The top food groups known to trigger hs in order of commonality are gluten, night shades, dairy, eggs and nuts. Eliminate 1 group from your diet completely for 2-3 weeks. Monitor your hs lesions to see if there's any change. You're hoping they will start to heal and no new ones show up. If no change after 3 weeks move to the next food group and repeat until you've cycled through them all. If things improve after an elimination you now have identified a trigger. Avoid that food group and your hs flares will be far fewer and much farther between. Things that contain gluten are anything made with wheat, barley or rye (breads, pizza, cake, pasta, pie crust, muffins, even beer. Night shades are potatoes, tomatoes, peppers, paprika, eggplant, tobacco (if you use tobacco you'll need to stop for those 2-3 weeks at least.) you have to make sure you completely eliminate each group as you cycle through them. Reducing consumption is not enough-it only takes a little bit of a trigger foods to keep things flared up).

I hope this helps! And I hope you don't think I'm one of those crazy diet nuts obsessed with healthy eating...in reality I love fast food and all things pasta and bread and cakes. Don't you know my trigger turned out to be gluten?!? Try the AIP, the worst that can happen is everything stays the same. Good luck!

Btw- you can also drain the lesions yourself by gently squeezing the lesion or with a straight pin. Make sure to wipe the area with alcohol first, gently squeeze the lesion and see if the pressure will cause it to drain. If not, wipe the pin down with alcohol then stick the pin in the largest of the pores on the lesion, remove, then gently squeeze the lesion to drain the fluid out. It'll probably range in color from clear to white to yellow to red. Wipe fluid away with alcohol pad. Keep area clean afterward. It may need to be drained every day or so til it heals. Watch out for infection. It's ok to do the vinegar bath before or even after draining. Good luck!

Thanks lula!!! You're super helpful, and no I don't think you're a health nut, I just think you know what you're talking about, can speak from experience and are (thankfully) trying to help. After you eliminated the bad foods from your diet, how often have these boils come back for you? And also, right now, mine is draining on its own, I put tea tree oil on it and it ruptured. I woke up to it leaking and I went to the doctor, she gave me antibiotics and said to come back for surgery on the first of August. Should I clean it with alcohol? I'm just using a gauze for it at this point. I'm so scared.

Asking if I should clean it using alcohol because at this point it is raw and pink, no skin covering the lesion at all.

If you can you might want to proceed cautiously when trying out something new on HS. HS patients often respond differently to different things, which can make it hard to give advice based on personal experience. Often what makes one person's HS better can make the next person's worse, so please do be careful. Sometimes you can test something out on just a very small area or lesion or boil. (My HS can often be so sensitive to certain things I'd probably end up in urgent care if I put tea tree oil or alcohol on it).

HS is famous (infamous, more like it) for coming back as soon as the antibiotics stop, to the point that I think a number of medical professionals may have misinterpreted this to think that the antibiotics are only acting in some non-antibiotic manner (such as, as an anti-inflammatory), others may automatically assume it's the most stubborn sort of infection even when that might not be the most likely. My feeling is that infection is such a common and well-known part of HS that when antibiotics make big improvements, doctors probably have successfully targeted a troublemaking microbe that isn't resistant to the antibiotic yet.

Sometimes it might be helpful to encourage your doctor to make sure they're distinguishing other common Staph in HS (S. epidermis, S. lugdunesis) from S. aureus and its MRSA strains. If they just assume it's resistant, they might take some antibiotics off the options list that might still work on non-MRSA Staph.

Also, it might help if the doctor you're seeing has some awareness of bacterial persistence phenomenon and how to avoid this problem with antibiotics - something like SCVs (small colony variants) of Staph might have a lot to do with this problem of things coming back as soon as the antibiotics stop? (One way this is supposed to happen is where a few bacteria can get missed by the antibiotic, sometimes for being in a temporary resistant state, and don't grow up to become susceptible to antibiotics until a patient stops taking them).

Using certain antibiotics, or certain antibiotic schedules might be able to help stop that in some cases.

Doctors may not necessarily agree (I'm not one) or co-operate with all that, but I hope they will do whatever is required of them, and promptly, so that you don't get stuck with this disease.

Lastly, if your doctor seems to confuse "incurable" Hidradenitis with treatable infections, if possible try to encourage them to keep the two sorted out. Assuming infections are untreatable simply because they become a part of HS may be another way some doctors give up too easily on treating this.

Hello hopingforacure! First, don't give up! Second, educate yourself! Third, get support from family and friends, and a doctor(my primary and dermatologist work closely to help me); keep lines of communication open with you supervisor. After dealing with this for nearly 10yrs, it has a name (an official diagnosis), I can have medication for the pain, and outbreaks, but mostly, I'm not alone. I see a dermatologist for my HS, and yes while antibiotic therapy helps with outbreaks, you can try other remedies for maintenance (in-betweens is what I call it). Eliminating certain foods may help. Topical washes such as Hibiclens, may help. Supplements may help. Nothing works for me. I eat clean, I eat junk. Stress level up, stress level down. Happens around my menstrual cycle or not. The lesions come when they want regardless of what I do. I use tea-tree oil on the lesions ( I never run out of the stuff). It is one of few oils that gets all the way down to the deepest layer of the skin to unclog the sweat glands. It helps me a great deal. I've learned to live with the temporary stinging sensation it causes as I have moderate HS. I see a dermatologist, because they know how to deal with HS, they can give you medication for emergent pain and discomfort, and they may recommend something just for you other than (or in addition to) antibiotic therapy. I'm about to start using Humira. It was just recently FDA approved for HS. I'm hoping it works! The HS is in my scalp now & it is really a game changer for me to say the least. I have hope for you as I do for everyone who is on here. There's got to be something for all of us! I hope some of this helps! :)

Responding to your question for me: if it's open and raw I just wash well. Hibiclens or antibacterial soap works well. Vinegar bath ok too if still having pain. If it closes over and fills back up that's another matter and swabbing with alcohol before during and after manual draining is important.

Since eliminating gluten I have far fewer flares and they are way less severe (only 1 maybe 2 lesions at a time vs 6+ lesions) when I do have one. If I have a flare I'll go back over what I've eaten and where I've eaten and can usually identify where I got glutened. Who knew McDonald's French fries have a small amount of gluten in them?!? Something having to do with using a small amount of wheat flour in the beef broth they soak the raw fries in before freezing and sending to the stores. I have to eat out a lot for work so I'm at risk for an accidental glutening on a daily basis :-/.

If you haven't read it yet, pick up a copy of the book called 'the hidden plague' by Tara grant. Very eye opening! Good luck and let me know if you have any other questions for me.

I love washing my flare areas with baking soda. It gives me some relief. I used to have flares on my underarms, those have subsided. And now my issue is my groin area. I've also started taking turmeric pills and consuming 30g ofor flaxseeds a day. HS is basically a form of acne, so if you can balance your hormones and lower your testosterone levels you can potentially lower your flare ups.

Thanks so much for the eye opening responses everyone! Chronic99 I'm definitely on the same page with u about being sure my doctors know the link between the staph and the HS. Although I recently used tea tree oil and was given antibiotics to find that it was gone in a few days, I am upset to feel it growing in the same place again and I haven't even finished my meds. Lula, im switching to gluten free and I have my surgery on the first of August and don't know what to expect. Its on my armpit. HIZRN I did not know that the HS could reside on ones scalp but nothing about this surprises me anymore. Odesuai I will definitely look into the baking soda thing. I love you guys for this and pray that we all find the healing we deserve. <3 <3 <3

DOCTORS ARE GOING TO TELL YOU A MILLION THINGS! JUST USE HS RELIEF IT WORKS: http://www.hidradenitissuppurativarelief.com/ hope this helps

Hi everyone! I'm very interested to read all your different methods of dealing with HS. I'm 55 and have been dealing with this since I was 16 - hate it! And the older I get the worse it gets! I live in Alberta, Canada and the town I'm in does not have a dermatologist and most doctors I've been to don't have a clue. The one that did suggested we botox the sweat glands - groin & armpits. The prescription for botox was covered by my insurance, excessive sweating is covered, however her fee for injecting was not and she wanted $500 each time! I did it once and it did help, the botox prevented my sweat glands from producing sweat which was awesome. I wish I could afford her fees!