I remember getting my first bump when I was 11... I don't even remember the point in time where one turned into 5. I do get hard bumps that feel like little marbles in between my legs and I use to just squeeze them and some stinky hard white stuff would come out. I get cyst on my groin, in my but crack(TMI) under my belly, on my armpits, and on my neck. The sucky thing is that I have had surgeries to remove skin on my armpits, and my neck and it still comes back Although one surgeon used cut my "sebaceous" cysts out, he blamed it on me having poor hygiene (which I don't!) It was only last November that I had a huge one on my neck and they sent me to University of Iowa hospital because another surgeon in my town wouldn't even touch it! The cyst was so bad they gave me an iv with Ketamine(sp?) and it made me trip balls while they were draining and packing. After that they had a bunch of specialty doctors look over my medical records, and finally a burn clinic surgeon told me I had hidradenitus. That day she took us to the clinic, showed me and my mom pictures and FINALLY my mom understood. Since that day she has not told me to quit feeling sorry for myself. Sorry this is so long! If your still reading thank you :p It was a journey, and it will allways be. Ive had this for almost 10 years, and just recently after seeing a handful of doctors know what I have. I did have major surgery on my neck this last December. They cut all this skin out in the back of my neck down to the muscle and left it open. Its just recently got done healing, and a few weeks ago I got another cyst right next to the scar :( I get super depressed. Ive been through alot with this, morphine addiction, Ive even thought about ending my life. Im defiantly here if you have any questions or you need to talk. Thanks for reading my story though, and sorry if I didnt answer all yours questions.

I have HS in both my armpit. I have stage 3 and considering having surgery this year. As you know, they are extremely painful. I first noticed my first boil 3 years ago (Feb 2010) and thought it was just a "deodorant acne" from wearing too much but when they started coming back to back in less than a month, I knew something was wrong. I do have one little one on my tailbone but that one doesn't bother me much, it leaks from time to time. But the armpits are ridiculously painful and very depressing. Good luck to you both, hopefully we'll get some comfort in our painful areas...we can only hope.

The first bump I got looking back was in 1997 when I was very pregnant with my first. I was terrified it was an std even though it was more on my bum. I saw my midwife right away it was already huge ( easily the size of a golf ball ) she assured me it was an ingrown hair lanced it and packed it. I didn't have another big one till 2006 when it moved to my tail bone. I worked for a cardiologist doing vein surgeries and was in so much pain I bumped it on a chair and blacked out in front of the dr. She had me rushed to the ER and had them take extra special care of me. This was the first time hs was mentioned to me. Since then I've seen so many drs and taken so many meds only to have it move to my groin my underarms and my jawline. I even had one dr say she couldn't help me unless I stopped sweating... In Texas on a 100 degree day! Seriously!?!?? At the time I was teaching 2 dance classes! Sheesh
Anyhow, it's been a long battle :( I wish it would just go away but the only success I've had is surgery with laser to cauterize the area and healing from the inside out. I've finally got ton so bad I'm having all of my areas removed in this way! Not gonna lie I had it done Tuesday and today has been rough. The soreness has set it... Not to mention I'd love to pee without having help to keep my dressing from getting soaked. I really can't complain too much I was miserable before the surgery and my hs is running out of tissue to chose from ;) I'm always here if any of you need a shoulder or anything for that matter.

I've had bad acne and cysts since I was 13, face, inner thighs, cleavage, back. I'm not sure when it actual HS started, I guess it all just blended in together for a few yrs. then I started getting the BAD ones in my groin area and one that reoccurs behind my ear. I didn't know it had a name until just 6months ago when my OBGyn had to lance 2 for me at my post-labor appt. I knew they were awful, and had been to the ER over 7 times to have them drained in the past but they always just called them cysts and boils...I had no idea that this thing I had been dealing with going on 2 decades was a disease and somehow knowing what I'm dealing with has really helped me mentally. my face is sooo scarred it's ruined most aspects of my life, I was always the toxic partner in every relationship because I just new my boyfriends were embarassed of me(prob all in my head) even now, sometimes if I have a sore in my groin area that is just huge, disgusting, and ubber-painful, I'll be mean to my husband until it gets better so he won't wanna be intimate and I won't have to tell him I have yet another cyst. It's cost me jobs, I did the best I could to cover with make-up but it doesn't work on open sores and at one job I used to pretend like I had a bad knee to explain why I was walking funny from time to time. I have been isolated to the point of being a shut-in at times in my life because I've been asked so many times (usually by kids who don't know any better) if I was in a fire like freddy cruger. One time, when I worked at bar, a guy came over and tried to wipe what he thought was blue pool chalk off my face where I had a bruised looking cyst. My x's best friend , I found out, use to refer to me as scarface, unoriginal, I've heard that before by other mean people when they have gotten mad at me. AHHH, I didn't even realize how many embarassing stories I have until now, there are like over 100 more.
BUT HEY, I started typing with a purpose, over the yrs I've tried so many things and one thing that I have had help SOMETIMES, not everytime, is "new skin" liquid bandaid. I don;t know if it;s the anti-septic or if it just sufficates them, but it helps shrink them if done at the right stage, not when it is 1st developing and is like a hard knot but when they start swelling and feeling smushy. But I only do it if it's one that has potential to get really big because sometimes it only makes it worse like it just irratates it.
And, guess what, I've been doing this TCA peel once a month since January, and it's really helping to deminish the scars! YAY ME! So hopefully soon when I meet people theyll think I'm just an average person seeing as my face doesn't really breakout anymore just other areas that people dont have to see.
POINT IS, don't feel alone, cause your not!! DEFINITELY NOT ALONE!!!!

Thank you all for sharing your stories and words of encouragement and advice! I would probably have gone mad had I not had Dailystrength to vent and converse on. :) I appreciate you all lovelies

Got the first boil on my ass when I was 19. My daughter was born when I was 20. By age 23 my whole left ass cheek was a minefield with scars and tunneling tracts. I had horrible self image problems and did not want to have sex much with my wife. I'm 29 as of tomorrow April 2nd.....been divorced close to 5 years now I had too many mental issues as well as physical to be in a happy healthy marriage......though it wasn't lol. After the left ass cheek they started appearing on the right one and all over my groin area and underwear line. Have a huge softball size cluster at the base of my spine as well that still drains.....oddly its the worst smelling one too. Then it hit under one armpit and now the other. Both of my armpits are active hurt and drain and are often inflammed.....thats whats up with the disease for me at this point.

My ass is horrible disfigured and scarred. But I do not get many new flare ups there.....just old sites flame up and the tunneling causes them to drain all the time.

Sucks I know. I used to blame this disease for so many things in my life. My alcoholism, pain killer abuse, failed marriage, ect;.....but I don't anymore. I accept it as a part of me and I can now live with it. Everyone has something.....HS is just one of my things I guess.

I wear many layers and 'clean up' frequently. I carry cologne or body spray in my book bag or pocket if I go out for a long period of time.

Now that i've accepted it I am happier than ever. I used to be so miserable and can totally relate to some of the newbies on here. I was in a VERY dark place for a long time. Wandering from doc to doc even getting counseling and on antidepressants.

If any of you have been on here over the last 5 years or so I'm sure you've seen my ups and downs. My journals too will illustrate some of it.....I haven't written a journal in a couple of years.....during that dark time though writing made me feel a lot better.

Sorry I know this is long but I just LOVE to talk about myself LOL

Dus

WOW, after reading all these stories I realize I am not alone.. I dont have to tell my story because (my story is in everyone of yours).. The one thing I want to say is I have had this disease for 17 years and you learn to live with it but there are times that the pain is so bad I just can function. I will visit this site often in the hope to get support. Thank you all for sharing... This is not easy to do..

:-)

I had my first flare up when I was pregnant with my son 4 years ago. It was on my inner thigh. At the time my doctor told me I had folliculitis. 3 more flared up near the first one so then he put me on an 8 week dose of Bactrim. The Bactrim worked until I stopped taking it. Flare ups showed up immediately. So he'd put me on it again....this went on for a year. So it eventually came to the point where he decided to surgically remove them. Well guess what?!?!? More flare ups on my inner thigh. So I finally went to a dermatologist who finally diagnosed me with HS. Just last week I had 4 flare ups in my left underarm. Worst pain EVER!!! I'd take the ones on my thigh anyday over the underarm. At least I can hide my inner thighs. Looks like no more tank tops for me this spring or summer. :(

Mine are located on my outer labia and just below my urethra..both sides of my groin and my buttocks...I got the one on my buttocks when I was 10...it came and went for 35 years..until I finally had surgery on it. It is still in "healing mode". I had two groin surgeries and then gave up.
I can't pee without holding a towel up to me, my biggest lesion was the size of a baseball...I am hoping it goes nowhere else.

Mine are under both armpits, under both breasts and on both of my inner thighs. I first noticed the little lumps popping up about 5 years ago and would panic as they got bigger and bigger. At first, I thought I had MRSA, but a quick trip to my campus clinic ruled that out. Most of the other doctors I went to, mostly my OBGYN, told me that I should shower more or clean myself better. I spent a lot of the last 5 years feeling like a dirty person. I only recently found a doctor that gave me the diagnosis. Unfortunately I still haven't found anything that helps. He says I'm stage 2, but says there's not much that he can really do.

I'm so glad I found this group! I've been working on a diagnosis for years, since I was 12, I'm now 32. Every doctor I've gone too has blamed poor hygene, acne problems, obesity, everything but an actual answer. After things got bad enough that I had difficulty moving, I finally got a doctor to believe my self diagnosis. Unfortunately, I feel like I'm still in a battle. Things are getting worse, I can't keep my house as clean as I'd like, my daily job is becoming a huge challenge. I want to lose weight, but the thought of trying to exercise brings tears at the amount of pain it would cause. I can barely walk across the room someitmes because things are so painful. My general doctor is sending me to an infectious disease specialist (this does not make me feel good). I don't know if this is the right doctor, I also am afraid he will not know what he's doing and start suggesting invasive things before medication for short term relief. And while I would love relief, I also am nervous about surgical procedure in my private areas. I feel so new to all this, yet I've been dealing with it since I was so young. I remember very clearly proping my naked leg up on my bed with a towel underneath it and draining my first leision when I was 12. My mother walked in on me and asked what I was doing, I explained these things were popping up everywhere and I didn't know why. Since then I've experience all the horrible symptoms and side effects of this disease. I can read it on my mothers face she wants to blame my obesity, she wants to take some of the blame herself, but she didn't know what to think when I lost a signifigant amount of weight recently and the problem worsened. I have an up-hill battle over the next couple of months coming to terms with what's happening, going to happen and what I can do about it. Please offer any advice you can! I'm so thankful to have found other people that understand!

Can I just say the obesity blame game really ticks me off!!! I had a dr say this to me when I was within my ideal body weight and teaching dance classes 4 nights a week! When I first got HS I was just over 100lb at 5'5" I was desperately trying to put on weight so I'd have some boobies!!!!!! I had a nurse ask me yesterday if it was trying to loose weight to fight my hs?!?!?! I found it funny because I gained 30 while pregnant last year and have 20 left to loose but I'm far from being an unhealthy weight! Just need to get that off my chest because so many of you seem to talk about weight loss as if it's to blame .... I assure you it's not!
All of my love
Chuck

Thank you ChuckyCharms! I spent a good amount of time explaining to my mother that it was not my weight that caused this disease. I kept telling her both losing weight and my current weight are problems. It's a no win situation. My obesity causes irritation with skin rubbing and losing weight causes problems because the exercising causes so much sweat and pressure on the skin surface. I explained that what made it possible for me to exercise was the antibiotics the general doctor prescribed. But when those wore off, the disease came back with a vengence and caused it to be impossible to move. She seemed to be wrapping her mind around all of it, but still, I could see she was curious is I lost all my weight, would I still struggle with this....the only thing I can do is prove it to her. It's taken me 32 years to figure this out, one step at a time! I also discovered that this diseased is linked to problems with thyroid glands. I have also been diagnosed with hypothryroidism, which links together with diabets, high blood pressure, and high cholesterol. It's these symptoms that first got my doctor thinking something wasn't right. I'm young, actually, pretty active and no matter what I do, my weight just won't come off or stay off. All these things lead to me diagnosing myself with this disease and now being on the path to figure out how to live with it.

tywhy I had the same problem convincing "My" Mother that it is not my weight that causes this disease, but she seems to know "better'' than the doctors..NOT. Yes, exercise does more damage than good to the areas I have them in. Weight loss or weight gain, same condition...for the past 35 Years.

When the dr said to me to loose weight I was 140 and very very fit! When I was very skinny and really needed to gain weight I had the hs move to my butt. That was the worst it got in that area but it was awful!!! It just upsets me so much that the medical community likes to place the blame there! I'm sure a healthy lifestyle helps any medical condition but shameing someone is never going to help them.... So upsetting!!!