Hi everyone! My name is Cheryl and I'm 27 years old. I've had HS for about 2 years now but was recently diagnosed about a month ago. I first started getting the boils underneath my belly (lasted a couple of months) and then in between my thighs(this also lasted a few months) and then I started getting them in the arm pits. The ones in my armpits were different than the ones I had previously. They were bigger, more painful and lasted longer, Then I started getting them in the groin area. I didn't have insurance so I was trying different clinics. They had no idea what it was and thought it could be MRSA, the lab results came back negative(whew). I also had bronchitis at the time and the dr prescribed something(sorry dont remember what) that would help the bronchitis and boils. It worked!! It was amazing because I went on vacation to the Caribbean and could actually enjoy it. But about a week after the medication finished. They came back with a vengeance!!

I work an office job and some days it was too painful to sit or walk or do anything. I ended up going to a different doctor and he thought it was a bacterial infection. He told me the best thing would be to go to a dermatologist but since he knew I didn't have insurance prescribed me minocycline and told me to use HiBiclens from the local pharmacy. The minocycline didn't really help at all. I was really frustrated and it was starting to take its toll on me. I was embarrassed and ashamed. I started to research it and realized it was HS. I didn't look too much in depth into though. I started to eat home-cooked meals and noticed the boils weren't as many at a time(sometimes I had 5-6 at once around my groin, my armpits were usually 1 at a time).

About a month and a half ago, I went to my primary care provider(i now have insurance YAY) and he thought it could be folliculitis and referred me to a dermatologist(finally made it to one). The dermatologist confirmed what I already knew but I couldn't help but cry in front of him. I had been researching HS in more depth and from everything I read...there was no cure. He prescribed me doxy for a month and injected each boil with a steroid shot and told me I'd have to come in every couple of months and see how the steroid shots do.

The next day, i could already see the boils flattening and drying up. This made me positive and I was determined to try everything the right way to get my HS under control. So I started researching more and I'm trying to eat more veggies and be healthier because I def see a diff in how my diet affected the boils. I can't work out because that makes it worse so I've started to go to the pool at my gym.

Sorry, I didn't mean to be a sob story but I just want to be able to help someone who might not know what they have is HS. I'm Indian so I've started to use some Indian stuff like Safi(a blood cleanser made with natural herbs I take a teaspoon twice a day) and I've also started to use Neem soap(made out of Neem which is a common tree in India and the leaves are used for many things) the Neem soap, I use in the affected areas only as it tends to dry out my skin.I will be adding Turmeric pills to my diet as well. I haven't been using the Safi for long at all to notice anything but I truly believe in herbal remedies. I buy these at the local Indian store but you can also find it on Amazon if anyone would like to give it a try. Please feel free to add me if you'd like Nice to have and be a part of this group!!

Neem soap:
http://www.amazon.com/s/ref=nb_sb_noss_1?url=search-alias=aps&field-keywords=neem soap&sprefix=neem+s,aps&rh=i:aps,k:neem soap

Safi:
http://www.amazon.com/s/ref=nb_sb_noss_2?url=search-alias=aps&field-keywords=safi&rh=i:aps,k:safi

Hi Ashley (and the rest of the group, especially new people!)
Hormones could definitely be a cause for a flare up. I do not get any abcesses anymore since I stopped drinking milk, but I will occassionaly have tenderness right before or during my period. Heat or constricting clothing can cause problems as well. Examine your foods, eliminate what you think might be causing problems. I know for me it was milk but for others its been other foods. It could be dairy, gluten, nightshade, etc. Dairy was my first guess because my father is lactose intolerant and when I had too much dairy my stomach always reacted badly. I was also in a couple of situations where I did not drink milk for lengths at a time and noticed that my HS improved. It does take time though. I took me a full year of not drinking milk for my arms to clear up completely.

I have been overweight my whole life but I never had any problems with HS until I was 18. So like others have said before even though the docs say weight is a cause -- its not. It can make it worse but only because when the skin is pressed together it gets warm, sweaty and no air.

I also had surgery on both armpits when I was first diagnosed by a doc. The scarring is not pretty. But I dont let it stop me from wearing tank tops or bathing suits. I dont even feel self conscious anymore about the scarring. You've gotta decide what you will be comfortable with but the best thing is to not let this disease control you. I decided the scars are scars and they just make up a part of me. If someone asks they dont need all the details I just say I had an infection in my lymph nodes and had to have surgery. If they have a problem with it, well thats their problem.

If you can get your HS under control, the body is an incredible machine it will heal its self as it can overtime. Might not ever be perfect but its not the end of the world.

It's easy to be depressed by it, but the best way to combat it is to take control. Figure out what triggers a flare and fight it. Another thing to wary of (and this kinda sucks) is that sometimes prescriptions and even OTC meds can cause flare ups. I dont take OTC drugs that often but when I do sometimes it causes some tenderness. So examine all your habits.

Hi, I'm Stephanie.
I haven't officially been diagnosed with HS, but I've come to the conclusion that I do have it through internet searches and the HS Institutes video on youtube.
I've been suffering with this since I was 13, although the spots weren't normally painful or large. When I was 17 I got pregnant, and it almost entirely cleared up, I never had flare ups. But a few months after I gave birth it was worse than it had ever been.
I am now 21 and flare up constantly. Some days I can barely walk without crying.
I want this cured, but mostly I want some tips on what to do in the short term to get it under control. At this moment, for example, I have 3 spots that are large and red and painful, but all are either too hard to drain, or are too far beneath the skin.
I don't want to live like this anymore.

Hello my name is Michelle and I am 41 yrs old. I have been suffering from HS for 6 yrs non stop. So glad to find a support group!
I just had gastric sleeve surgery on October 18. I am so happy I found this group. This has taken a huge toll on me physically mentally, and spiritually. Not to mention how hard it is for loved ones to see me hurting. Since my surgery it has flared big time. We are so disappointed since the docs were hoping for it to get better with weighloss. I'm down 52 lbs today and hoping this stuff will ease up the more I lose.
Any one who would like to chat let me know.
Thanks!

Hi! im Arianna 18 and have had HS for 6 years but i have just got a name for this a few months ago I've tried a few different medicines includes tetracycline,differin,clindagel etc i have this on my under arms and my inner thighs they flareup every month. I recently purchased some turmeric supplement from Walmart and that helps a little .. i waiting on a phone call from a doctor the specializes in HS as we speck i don't know what stage i am at all so i hope to have some answers:)

Hi, I am Desirae and I have been diagnosed with HS for about 10 years, and suffered with it silently for several years prior. I love that there are support groups for this. It really helps to lift me up when I feel like I am gross, or the only one that has it. Like all things, there are good days and bad days. There is a really great, informative support group on Facebook that I found prior to the one here. I am not 100% sure of the title, I think it is Hidradenitis Suppurativa Support Group. If you are on FB, you should totally check it out.

Hi all of you beautiful ladies!! :flowerforyou:

Firstly, thank you to Kathleen for creating the original thread and this support group. It's a big deal to get this out there and get everyone talking about it! Like, some people here I also happened to just take a shot in the dark and search randomly within the group section for "Hidradenitis Suppurativa". Boom! Here we are.

My name is Tara and I'm 26 years old and my doctor suggested I might have HS around a month and a half ago. About 3 months ago I made an appointment to get a lump (read: abcess) checked out in my left underarm. The one doctor just said it was a cyst, nothing to worry about and to go on a general diet to lose weight.

I saw a nutritionist immediately as diabetes runs in my family and ended up starting a 1200 calorie/day regimen for about a month until I had a more thorough physical with my primary.

I see the primary and tell her about the lump and show her also how I've been breaking out on the sides and underneath my breasts and she casually mentions HS and also that I have signs of acanthosis nigricans and needed blood work to see if I was pre-diabetic. The need for a blood work for diabetes scared the poop out of me on its own, until I go home and google HS.
THAT. As you all know, the pictures and descriptions are absolutely TERRIFYING!! I was in tears randomly every day for about a week til I had the courage to share it with my partner (she has been so supportive) and my mom. I'm even in tears now reading the HS thread and the support group thread knowing that so many of you have it worse than me. I hope and pray for all of us that DEFINITIVE strides in medicine and support can be made in the near future. It's absolutely ridiculous that even DOCTORS misdiagnose, don't recognize it or don't even know about it!!! I consider myself very lucky that my primary doctor knew. I almost didn't tell her about the "acne" on my breasts.

Anyway, after reading about the surgeries I immediately decided that I absolutely could not go that route. I started googling "natural remedies" or "natural treatment" until I came upon the Robb Wolff article and the Primal Girl blog. Maybe it's because I want it to be true, but I became convinced that it's an autoimmune disease. I know that's debateable, but I've found more evidence of remission in people who make diet and lifestyle choices than I have with surgery or antibiotics.

I believe that I am in Stage 1 (Goodness, I hope so) and I was reliably doing a low-carb, gluten-free diet with limited dairy. Not just for the HS, but also in fear of being pre-diabetic. It seemed the the small, acne-like breakouts that I had were healing and clearing up and I had no new lesions. However, after my birthday (July 18th) I went on vacation to San Francisco and ate tacos and oysters and In N Out and just fell off the wagon. I've been back since around Aug 1 and noticed a few new "pimples" (sorry if I use some terms interchangeably, but its just to get an idea of size) on my breasts and just today I noticed a marble-sized cyst in my groin and the original cyst in my left underarm returned, this time painful. It's a sign. And Fitness Pal, here I am!

I'm super short and have always fluctuated between being fit and thick (118-125) to chubby (130). However, in 2009 I studied abroad in Spain for a year and then came home, eating everything I missed. The last few years of college and post-graduation the weight crept up. 2010, 145. 2011, 155. 2012, 165. 2013, 175. With hitting my limit this year 200lb in 2014. At 4'11 that's more than a chunky monkey!!

I'm looking for HS support, maybe diabetic/pre-diabetic support, but definitely weight loss support and most importantly, friends who just want to live a healthy, happy life!!!!!

So, HELLO to everyone. You all seem amazing!!! I'm sorry for my lengthy introduction, but if anyone wants an HS buddy or diet-buddy or work-out buddy from afar or (maybe close!) please friend request or message me!! I would love to meet people who are interested in keeping each other accountable!! May we all at least be able to manage this heinous disease! :drinker:

xoxo