About 20 years ago I had HS and didn't know what the heck it was. I finally went to a dermatologist and he put me on antibiotics and Accutane. He also zapped my sores with some zapper thingy. It totally went away for 15 years. I have been struggling the last 4 years to get it back under control.

I went back to the same dermatologist because if he helped me once he can help me again right???? WRONG!!!!! We tried different courses of antibiotics for 18 months straight. I had constant yeast infections and stomach discomfort. I did 6 months of Accutane, that only gave me the worst chapped lips I have ever had in my life!!! Once in awhile he would use a syringe full of something to at least take the inflammation down. Finally he told me surgery was my only alternative.

During this time I became chronically fatigued, unable to lose weight, depressed, adrenal fatigued and just plain miserable. Finally my husband said I don't care what you have to do but you have to get better.

The next week I made an appointment and a Hormone & Health Clinic. After a few appointments and several different blood and saliva tests we changed my Spironalactone dosage, changed my thyroid med from a synthetic to a natural. She even gave me an extra half dose for the afternoons. What an improvement.!!!! She also recommended for me to see a therapist. It is so nice to have a whole body/mind care. After my preliminary appointment I stopped taking the antibiotics. I figured it couldn't get any worse right???? That was last April. Although my HS hasn't improved much my well being has.

At the beginning of this year she recommended I see her nutritionist to see if I had any food intolerances. Not really the kind that make your throat closed, but the kind that cause inflammation. It came back with dairy being my biggest concern, along with sugar, chicken eggs, yeast, walnuts and amaranth. So I tried to cut way back on all of those.

Not good enough, she wants me to completely remove dairy for 3 months. I am on my 3rd week and really struggling. I LOVE CHEESE!!!!! How long do you have to be completely dairy free to know that is your trigger? Potatoes and gluten showed up fine on my test, does this matter or do I still need to eliminate them?

After my last remission I had a tummy tuck ( longer story, bottom line I had a 12 lb baby boy) and I used to get sores along my pant line. Since having all that skin removed when my HS resurfaced I have not had any sores there. So I am hoping to go into remission again and have a upper body lift to remove excess skin and tissue. Has anyone had anything like this done?

I was also concerned about 2 sores on the outside of my private area, they have been filling and draining for over a year now. Does anyone have any suggestions on how to make them stop? It is very uncomfortable and embarrassing.

Thank you to all of you that have taken the time to read and respond to my post. It is comforting to know that there are others that know how your are feeling and have genuine compassion.

I am 23 and when I was about 16 is when I started to get boils. Initially I did not know that it was HS I just thought I had an infected hair bump because it was in my private area. My mother also got boils as well. Although it was painful, I didn't think much of it to go to a doctor.

When I was 18, a freshman in college, I got a huge golf to baseball size boil under my left arm. At first it didn't hurt very much it was just uncomfortable. I went to the doctor that time. They didn't know what it was either, so they prescribed antibiotics and told me to put a hot compress on it and so I did. Two days after that I had a fever, I could barely move because of the pain and so I went back to the doctor, a different person this time, and they lanced and stuffed it. It was horrible! But I thought the worst was over.

Finally, the lanced boil never fully closed and I began to get other boils under my skin in the same area. I remember one time I didn't even know I had a boil there until it bursted in my shirt. OMG it was disgusting and the smelled was horrid. The HS began to tunnel. THEN that's when I learned that it was HS. The doctor would give me antibiotics, and use lithium (I believe) to burn off the protruding flesh and close the wound. That was a waste of pain and time because it never closed ever, still isn't completely closed to this day, , but the inflammation has subsided.

Then I started developed a boil behind my ear lube when I was 20. I got that lanced too, the boil never came back, but my ears were both inflammed although only one had a boil. Recently, I healed the skin with bentonite clay and colloidal silver. Please guys try that!

While I was 20 the abscess on my private area began to tunnel and get a lot worst especially during my period. I have had a boil on my elbow, out of all places, my elbow. I use to get them under my breast and on my inner thighs. They no longer come under my breast and very rarely do I get them on my thighs. They no long bother my ears either. But my OTHER armpit is inflammed as I write this message and my private area has trouble healing.

I have tried eating healthy I was a vegetarian for most of the month of April and that helped a little with the fatigued. What bothers me the most emotionally, is that the pain keeps me from doing things I love to do like going on walks and running. What I found that has helped me though when I'm depressed is talking about it and learning new ways to help it heal or release. If anyone out there is dealing with depression for this if you are reading this, just know that you are not alone and never stop trying to find a way to heal yourself. While in college, I started to tell my friends about it and I found that about three of them had the very same thing. I felt a bit better about it because they understood exactly what I was going through. The pain eventually goes away, the scars are ugly, but they are you battle scars. Keep ya head up!

I was 12 when I noticed my first "lump". Being the neurotic person that I am I thought it was cancer. We made an appointment with my paediatrician who told me it was probably just a pimple or ingrown hair.I don't remember it gradually getting worse, I just know that it did. When I was 15 I ended up getting a abscess that was really infected. I had a fever for a week. So I ended up going to the hospital, getting IV antibiotics for 2 weeks and having to have it lanced without being frozen because it was too big to freeze.

At this point, I still didn't have a family doctor or even dermatologist. I think I was probably 17 or 18 until I finally got a family doctor who saw what was going on and referred me to a dermatologist. I finally got a name for what was happening.

We tried everything. Acutane, daily antibiotics, injections, etc. At one point I was being given weekly injections that were helping, but on a very short term basis.

Then I went a few years without seeing her. 2 maternity leaves and I find out from my family doctor that she'd left the practice about a year earlier. So I got a new reference.

During this time of inaction the HS spread to my groin and bottom and had gotten worse under my arms. I've stopped pursuing romantic relationships because I don't want be to rejected for something that's out of my control. It's generally frustrating but I think my coping mechanism is to ignore it and not talk about it.

When I first saw my new (and current) derm she was pretty shocked. Frankly it's a point of pride now. Every time I see a new doctor they're genuinely shocked by it. Whether it's because they've never seen it before (which is a frighteningly high percentage of doctors) or because of the severity.

My new derm said it was severe, and that we needed to act quickly. So at 26 I'm on daily antibiotics, Diane 35, and Humira (max dose).

It's incredibly frustrating. Nobody really "gets it". My parents have been along for the ride with me, and even they can't fully comprehend the psychological ramifications of it. My mom gets frustrated because she thinks I don't talk about it enough. But I'm afraid that if I start, I won't be able to stop crying. I don't want this to be my entire life. So I don't tell anyone, I'm not intimate with anyone. It's affect every single aspect of my life, which is something I don't think people understand, and I don't know how to explain it.

Not sure how long ago I first got mine (I started puberty early), but they went away after being lanced and left behind ugly scars. They got bad in my early 20s and I always secretly wondered if they were an STD. I searched the internet and knew that other people got them and they weren't an STD. Although, I still didn't know they were HS. I'm 29 and gotten an annual pap, etc for a long time....no one told me what it was. I even asked at one point what I could do to prevent them and wondered what they were. At that point, I got told, "some people just get them regularly and it has nothing to do with hygiene." I found out YESTERDAY that it was HS and got put on antibiotics for a particular bad/painful one. It's crazy, but it feels SO much better to actually know what it is and that I'm not alone. Been wondering if waxing would help?

My first boil was in early 2009, probably around the most stressful time I had experienced so far... wondering if that's a trigger? Anyway, I was 21 and was totally embarrassed by it. Didn't have health insurance and never thought it was "worthy" of a doctor. Over time they became more frequent and bigger... the biggest one I've had was about the size of a golf ball. They are so extremely embarrassing when they randomly pop, I haven't found a sufficient"bandaid" or anything to really control them. I found out last year, when I was 26 when I finally got health insurance (which I don't have anymore because I'm now divorced and don't make enough money) what it was. My dr. Told me to wash with hibiclens, which helps heal them a bit faster than on their own and suggested I go to dermatologist. Which I never did.... so, I'm finally getting fed up enough with it to do more research nd find a way to get insurance to possibly get this taken care of.... but I don't know if surgery will help.... or medicines, or anything like that. I'm really not a fan of "medicine".... it's really difficult to keep a smile on my face when I feel so ugly underneath my clothes. And the pain. Just nor.al everyday things.... like sitting in a car too long creates them, or sitting a certain way in my office chair... it's so frustrating and depressing.... and I'm super self conscious and anxious all the time, I'm exhausted. I'm glad I found this forum, I'm hoping to learn more and feel OK and confident again. :)

I first started noticing boils between my thighs aged around 17. They were never particularly painful, but sometimes I used a plaster over them to prevent chafing pain. I'd always get one boil per month or sometimes a few more. I didn't think much of it, just thought it would pass after puberty.

When I was 19, I went to the GP and showed her my thighs, she thought it was folliculitis. I also had mild acne on my face. She said Doxycycline would work well for both.

I was on doxycycline for 16 months. It worked terrifically, although it took a while to start to work. After 5months, my boils stopped coming and my face was totally clear. The HS boils never ever came back, and my thighs were so smooth! However, after about 14 months, my facial acne started coming back, and worse than before. Decided to switch to accutane for the acne. I just assumed that my boils were gone for good, as I had no idea what HS even was at this point...

Needless to say, the boils came back during accutane. I found out what they are. Now it is time to finish accutane, and then probably go back on antibiotics or some other medication to hopefully kick the HS back into remission before I get some nasty scars.

Am currently 21

I've had flare ups and bumps since I was really young. Maybe 11? I've always been told cellulitis and I'm at risk for a bad skin condition, here I am. I'm 24 and my HS is insane. I got diagnosed with celiac almost 2 years ago after 4 years of trying to figure out what was wrong with me. I've tried changing my diet. With my work schedule I usually fall back, skip on vitamins that I need and intense flare ups. I started noticing these "bumps" about 1 1/2 ago. I figured it was regular acne in odd places and it was nothing. As time went by, they became more painful. I was too embarrassed to see a doctor. Earlier this year I had a flare up so bad I had to leave work early due to being in pain, not being able to walk and all of a sudden them popping and leaking everywhere. Gross right? The next day I go to the doctor and right away he said I have HS and got put on antibiotics for 2 months. And as of now, I'm dealing with one of the worst flare ups.

If this awful disease has taught me one thing, it's to take care of your body, learn to love yourself and the skin you're in even though it's a struggle every single day. I'm starting a new weight loss/quit smoking journey. The day I can feel good in a bikini I feel like my scars will be taking over more than they already are. I feel thankful that I have someone in my life who isn't "disgusted" by it and doesn't judge me, but HS can literally make you feel less of yourself. The pain can be unmanageable and I'm spending so much money trying to find home remedies to at least control it. It's spreading in different areas. More pain and more insecurities. Nothing to cure it, but at least we can all try our best to take control of our bodies again! :)

Hey LuvMyCapt, I just wanted to say that I also had a sore right in my groin area that wouldn't heal. I had it for over 2 years before it finally healed up! I started keeping a pad or a folded paper towel between my sore and my panties, and I think that's what eventually helped it close up. I think the groin area just stays sweaty and stuff and it's harder for sores to heal in that area because they can't stay dry. I also kept putting neosporan on it. I didn't know about HS at this point though so I was just trying what I could. I'm sorry you are going through this! I am so glad I know about HS now though. When I had that sore and didn't know about HS, I started to worry I was getting a flesh eating disease or something lol I had no clue!

I have been suffering with HS for 17 years now :(
I remember The day the first one appeared, I remember where I was and how I felt. I was 12 years old, sitting on my couch and noticed a big puss/blood filled bump on my inner thigh, I was just wondering what on earth this was, I think I even showed my little brother and that would have been the first and last time my family of any kind would have known. I let it go thinking it would go away, but when it didn't it just got a lot worse. I was a rather shy child, already insecure about my body being chubby. Once more started showing up, the fear of telling my parents stuck and never left. If only I had a time machine to go back and tell them right then and there, maybe it could have gotten under control.
Well this became the worst secret I held on to. I felt so ashamed and scared that it controlled me. It spread to my under arms and eventually my belly. I can't tell you how many nights of crying and misery I have felt. Like most agree, you don't feel normal and all you crave is to feel good about yourself! As the years went on, nothing changed but more scarring. It was debilitating, the fear I felt. Never saw a doctor or told anyone! It wasn't until I couldn't take it anymore. I was 22 years old when I burst in tears telling my best friend. I shared how scared I was to go to a doctor and she agreed to come with me, the weight that was lifted from my chest in confining in her and making a change for the better was long over due.
Well, like so many, this first doctor told me to eat healthy and prescribed antibiotics. Well we all know how successful that is, maybe I saw a little relief but it wasn't for long. Over the next few years I did lose a good deal of weight and began eating much better. Finally the ones under my arm pits and my stomach cleared up! I haven't had a problem in those areas for about 5 years now. Unfortunately I still suffer in my groin area. I thought I finally had relief when the 3rd Doctor I currently see prescribed me birth control a year and a half ago. What I hate most about HS is that it teases you time and time again. I literally thought it was gone for good once I got on the pill. I had about 2-3 months of no break outs!! But this disease is the worst and after that it came back regularly. I do exercise frequently, but after doing considerably more research, I need to bite the bullet and eliminate the common foods that HS suffers find is the problem. Then re introduce items slowly to see if there is a correlation with break outs. I have plenty of scars and discoloration in my group region, but at this point, I don't care, I just want the HS gone. I can live with scars. On a positive note, my underarms and belly don't show the damage as much as it used to!
I'm glad I can share my story with people who understand. I find these are the places I get the best info and we certainly can help one another :)

I experienced symptoms of HS 10 years ago. I was 15 that time, and started feeling/having painful and recurrent lump on my nape, which eventually start to breakout, bleed and produce pus. I sought for help and was referred to a general surgeon. He assessed the lump and diagnosed it as sebaceous cyst, and advised to have it excised via a minor surgery, so I did, and I hated it. I thought I was over and done with it, but after a few months, I have noticed that a same kind/type of lump has appeared in my armpit and I had to endure the excruciating pain, rather than going under the knife again. I cried every time I get the lumps. I didn't know who to ask help from, so I kept it to myself. It was only during my sophomore year in Nursing that I was able to figure out what these lumps were, or have a sense of what's going on every time a lump appeared. I swear! I kept the condition a secret because I was humiliated. My parents thought those lumps appear, or were formed because I kinda am on the heavy side, and that's another story. Of course, I knew the extra weight somehow contributed to the condition, an aggravating factor, even. Then again, I had to take the matter into my own hands. I started having lumps all over: my nape, armpits, groin and neck. Since I didn't wanna have another surgery sesh, I resorted to self-medication. Antibiotics, NSAIDs, etc. just to survive another breakout. Worst case scenario? I force the lumps to pop and drain the pus out myself until I feel relieved. I clean the wound, dress it, and apply warm & cold compress alternately. I mean, whatever works, right? I know I should seek out professional medical help, but I feel like it's a humiliating and disgusting condition. It affects my self esteem negatively. It lowers my self perception and it restricts me. I hate HS. I thought I was the only one suffering from it. Not that I am glad or happy to know that there are other people out there who are also suffering from this horrid condition, but it's more of comforting to know that I am not alone in battling a monster that is Hidradenitis Suppurativa.

This version of you is here too, dude!? Aw man, my day just got better. <3 old friend.

I got my first cyst when I was 16 it kept coming back draining then back again. White pants were out. Then I got one in my armpit it never got real big or infected but they removed it to test it came out with 3 more attached.. They had no ideal what it was. I started getting them in my private area, under my breat., back of my neck now my arm pits my armpits just started creating the tunnels so they are starting to look worse. I'm embarrassed to wear anything that shows them. I've been divorced for about 4 years now. But I'm to embarrassed to date anyone my ex-husband couldn't deal with it so I guess I'm to scared to try again. Plus back then I didn't have to deal with all the leaking that happens now. I'm really sick of having to sleep on towels with towels under my arms. I can't imagine sleep over at anyone's bed. So I'm started to feel the mental anguish of this awful curse.
As much as I would like to just curl up and give up. That's just not me I still work out everyday and deal with the pain. I'm still hopeful for a cure. God knows why I have to go through this. I'll just keep praying for strength and understanding

I am 58 I have had HS since I was 16 only like many I did not know it was HS I am now on SSD I had to leave a very good job because I am always broken out. I have a son who is understanding to my mood swings. I tend to rage when sores drain, I have just started to see a man and considering my husband left me because of HS I am so scared that he to will be gone soon. I found a doctor that "treats" HS but he would rather cut me been there done that not going through surgery again. He has put me on 2000 mg of 2 different antibiotics 1k each a day but did not help much and messed me up. the infection in my system has been so bad my teeth started to go bad. Now I have had all my upper teeth pulled and wear a denture. I hate this thing called HS.. I live with the pain because I fear the addiction of pain meds. My general Dr has never even heard of HS I want to get off SSD because I liked working I liked making money and feeling alive.

Hi my name is Kim. I have had hs for 25 yrs now. I had surgery after surgery . sweat glands removed and I still suffer from it. This is such a painful miserable thing...my body is soo scarred ...I wished they could find a cure to at least slow it down..it seems now that I'm in my 40s its just getting worst...this has caused my to lose a lot of men that wanted to date me because I'm soooo in a shamed of wat my body looks like....I jus want to be able to live...