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I Have Hidradenitis Suppurativa

Personal Stories, Advice, and Support 1,008 People

    Still Learning To Cope

    I first started showing signs of this disease when I was around 8 years old. It of course wasn't as extreme back then, but there would be an occasional bump or red spot around my groin and around that area. Growing up I never told anyone what it was because, like many of other...
    egoodwin415 egoodwin415 18-21, F 5 Responses Jul 18, 2011

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    I'm 25 female, I get them terrible in my armpit

    and groin. I have a very large one in my armpit right now, and it's appeared to be somewhat broken but not fully burst yet. What can I put on it? It's got a tiny bit of stuff coming out but it's not full on draining yet. I've been using hydro peroxide/antibiotic ointment...
    morgandonor morgandonor 22-25, F 4 Responses Apr 14

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    My Story

    I was diagnosed with HS a little over a month ago but I have suffered from it for years. I was either too embarrassed to talk about it or to go to the doctor. In 2008, I worked up enough nerve to show my doctor and I was misdiagnosed with folliculitis. She then prescribed me an...
    ACEY88 ACEY88 22-25, F 3 Responses Mar 9, 2013

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    I've Never Been Formally Diagnosed...

    but I've had the symptoms since I first hit puberty. I only flare up in my pubic area...lucky me. Sometimes, it becomes so painful to sit, walk, stand, etc. I never wanted to be involved with anyone because I figured that no man who hasn't known someone with HS...
    kendyboo kendyboo 26-30 7 Responses Oct 3, 2008

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    Well, I tried telling my best friend today.

    I do admit that I've been beating around the bush and I didn't even tell her the name of the disease, but she still just doesn't seem to think it's that serious. I don't know what reaction I was expecting, but this just wasn't it. Maybe one day, I'll be able to lay it all down...
    ab019 ab019 16-17, F 3 days ago

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    What Cured My Hidradenitis Suppurativa (hs)

    I am ashamed to say that I have lived with HS for more than 25 years and never new what it was until 2 weeks ago. I have probably seen more that 40 medical specialists throught this 25 years and none was able to tell me what it was (shame in them). I've also spent thousands of...
    juanparga juanparga 41-45, M 1 Response Aug 3, 2013

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    I Seem To Be Going Into Rmission From Stage Ii

    Hello All            I am a 45yr old female, who lives in Australia. I have had HS since I was a teenager but it only really started to get consistent until I was in my mid twentys. That was when I started to seek out doctors and they all said I had ingrown hairs and...
    Jatza Jatza 41-45, F 6 Responses Jan 3, 2012

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    You Can Get Your Life Back.

    Hi. My name is Catherine and I have been suffering with HS for over 23 years. They first started out as red bumps in the vaginal area. After repeated infections my doctor surgically removed the tissue. That didn't work. The lesions started appearing in the same location but on...
    catherine435 catherine435 56-60 9 Responses Mar 19, 2013

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    Three years later and all I can say that's

    changed is my diagnosis. but I stay hopeful. I stay positive--or at least I try too. I now have severe HS in hurley stage three which, for all you non hurleys out there, means my disease is not responding to any treatment. I wanted to share my experience with you guys in...
    cassandrastwrt cassandrastwrt 18-21, F 2 Responses Feb 17

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    Stay Lifted!!!!!

    I've been in bed for almost a week now but I feel more inspired than ever. Im glad I found this website and Im even more glad to find people who understand my pain and frustration. Writing and sharing my feelings has become very therapeutic for me. Although my family and...
    tjuane tjuane 31-35, F 1 Response May 2, 2013

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    Omg this is mind blowing there are real people

    like me. Someone els who actually knows my pain! I am 29 and have had HS for 20years now. My first incident was "boil" and I have to say if I knowen that it was just the tip of the ice burg well i don't know what I would have bone but I would have been more proactive now at 29...
    mego4200 mego4200 26-30, F Apr 12

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    I have this horrible,

    painful, embarrassing disease as well. I just recently discovered that there was a support group for this. Even though I have my friends and family as a "support group", I still feel alone in this knowing that they do not really know or understand what it is like to live this...
    pech0252 pech0252 46-50, F 1 Response 4 days ago

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    Absolutely No Bathing Suits

    I can remember right after I started my first period I began to get "sores" in between my legs. I can remember the day I noticed them. I had went to Kings Island with my school. I had went to the water park all day and then put my shorts on over my swim suit, so I...
    deleted deleted 26-30 9 Responses Mar 12, 2009

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    So...its been almost four months

    since i last wrote on here about my HS. honestly, nothing has changed, except my meds. Accutane did not one positive things for me, and left my lips practically falling off from being so dry. These topicals that I put on daily, aren't doing much. I have tried so many natural...
    bel1196 bel1196 16-17, F 2 Responses Apr 13

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    Hi, my name's Nichole.

    I am 26 and a Stage 3 sufferer for 5 years now, and I'm tired. I have been getting lanced and drained for years and I now have the opportunity to have the surgery, only thing is I have to stop smoking. That's easier said than done though because the stress of the condition tears...
    Nichole2688 Nichole2688 26-30, F Mar 10

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    So I just got in from the hospital!

    I just found out i have Hidradenitis Suppurativa. I have done my research and I see how ugly these cases can get. I am supper nervous and dont know what the future has in store for me, with this new diagnosis. I am praying that my case of HS isnt as severe. And that it wont get...
    Simplyleidy Simplyleidy 18-21, F 2 Responses Jan 29

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    I’m mad at myself not my body.

    I made the decision to eat those gluten filled foods that I knew in the back and front of my mind I had no business eating. So now I’m walking around the house acting like nothing is wrong, when in reality I kind of just want to lay in the bed all day, but that’s a...
    hsoutreach hsoutreach 31-35, F Jan 9

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    My Story...

    I have been living with HS for about 10 years now and everyday is a struggle.  The pain from HS is something I never felt before some days it hurts to walk, sit, even move my arms.  I have tried just about everything to help with this but nothing seems to work.  I...
    bwynnsgirl bwynnsgirl 22-25, F 10 Responses Dec 28, 2009

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    Medical Marijuana For Hs

         I have been suffering from HS for about 4-5 years now and it has slowly progressed. As those of you suffering from hs know, this is an EXTREMELY painful disease. Although some may not condone it, I choose to medicate my self with marijuana, It...
    4four2twenty0 4four2twenty0 22-25, F 21 Responses Sep 2, 2009

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    PLEASE Read This!!!

    Hello everybody I am new to this forum but not new to this disease. I finally diagnosed myself with HS 4 years ago and I have had it for what I can remember my whole life. Doctor after Doctor perscription after perscription.I have had tummy issues my whole life being diagnosed...
    shuswapian shuswapian 46-50, F Sep 12, 2009

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    I have been trying to heal completely from my

    last outbreak. Which still seems to be draining,as long as it not a new outbreak I can deal with it. So in looking for something that might help with the pain of the inflammation I went online. I found out that Turmeric helps with the inflammation, so it's not painful anymore...
    MrsLadiebug MrsLadiebug 46-50, F 1 Response Apr 9

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    I just got diagnosed 4 days ago by a

    dermatologist. The first derm did nothing but lance & give me antibiotics, which did stop the breakouts for a month & then new ones appeared under my right arm, & one on my left. I am 61 yrs old & cannot believe it is happening now to me. I have had a problem with zits in my...
    outwest2003 outwest2003 61-65, F 2 Responses Jan 19

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    This Diet Has Worked Successfully For Me

    I have struggled with HS for years. My Doctor verified that I have mild HS (I consider myself lucky) I sympathized with those that are still trying to find a solution and the pain (physical and emotional) that one has to deal with. After doing long research, it seems that while...
    WorldTravelr WorldTravelr 31-35, M 9 Responses Oct 4, 2010

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    I'm 19 and I've had it

    for a few years. It's all over my body and in my mind it's been ruining my life. My husband said it doesn't bother him, but it bothers me. This is a terrible disease.
    Kierstypants7 Kierstypants7 18-21, F 2 Responses Dec 13, 2013

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    Ive had HS since I was 5 years old im

    now 20 it took 14 years for the doctors to figure out what was going on and now my body is so scarred that I dont wear tank tops or shorts its completly ruined my life. Doctors have tried giving me antibiotics but they havent worked and they tell me to lose weight (im not that...
    HK1093 HK1093 18-21, F 2 Responses Dec 31, 2013

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    My name is Tracy, I am 49 years old

    and have had HS since I was about 17, but this disease was only diagnosed with a name about 10 years ago. I honestly did not realize just how many people suffer with this same disease until recently. My personal experiences with Doctors have been horrible. The ones that I...
    pech0252 pech0252 46-50, F 1 Response 4 days ago

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    Lesbian With Hidradenitis

    There are dyas when I don't want to get out of bed. There are days when nothing I do helps the pain. I've had this for over 15 years. I've been to doctors, dermatologists, emergency rooms and while most of the doctors were nice. The thought I have to go through the rest of my...
    awful44 awful44 41-45 3 Responses Apr 25, 2012

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    Found Some Relief

    I recently went to a new doctor and she prescribed me Clindamycin HCL 300 mg. I take one every day and I have also began using Hibiclens. I purchased a gallon jug and use it every time I bathe/shower. The combinations seems to be helping, have had no new outbreaks in three weeks...
    Oregoncoaster Oregoncoaster 36-40, F 2 Responses Mar 31, 2013

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    I have had recurring outbreaks of HS

    for more than a decade now. From small, dime-sized lesions that pop and go away, to gigantic baseball-sized atrocities that make it impossible to walk. I was officially diagnosed about 4 years ago, after seeing many doctors. Most of the time, I wasn't treated with anything other...
    Volstaag Volstaag 31-35, M 1 Response Dec 19, 2013

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    No Money ->no Cure ->no Hope

      I have HS. I've been getting boils for about 10 or so years. I hate it. It slowly progressed from about one or two lesions once in a while, to 5 and 6 new lesions a week. Right now i have some boils that are new, some that have erupted and some that have reappeared. I can...
    HSinNC HSinNC 22-25, F 18 Responses Nov 19, 2009

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    Radiation For Hs

    This is my second story about my condition, called Hidradenitis Suppurativa. Let's consider this sort of a follow up. To recap... I have had HS for six years. Every doctor I have encountered has said that without a doubt my case is the worse they've ever seen. So it's easy to...
    ohsnapitsrachael ohsnapitsrachael 18-21, F 1 Response Jan 5, 2012

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    i have been dealing with HS

    since i was 13 years old. i have had several surgeries and they are still no cure for this. I cant move sometimes or go to work or school. i just recently had surgery again to have 7 removed from armpit,breast,groin, and buttocks. I can feel my self-esteem dropping more and more...
    kreed31 kreed31 31-35, F 1 Response Mar 23

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    I've had it for 11years just found out there

    was a name for it a week ago, and no cure, pretty ******* lame! But I've been dealing with it for 11 years! And I'm ok so i guess I'll keep on dealing with it and hopefully I'll be ok! Anyone have any good ways to control their Hidradenitis Suppurativa?
    nnayy nnayy 18-21 1 Response Feb 13

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    My Hs Story

    My name is Paul and I live in Richmond, Va. I am also 55 years old. I have been battling HS since the age of 15. It started with my arm pits for which I had most if not all of my sweat and hair glands removed. For decades that seemed to have 'cured' the problem but just very...
    Paul1957 Paul1957 51-55 7 Responses Oct 7, 2012

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    Sick And Tired Of Being Sick And Tired..... A Womans Cry.

    I am 31 years old and I suffer with Hidradenitis Suppurativa. It's funny that now I finally have a name for it. Ive suffered for what I thought was just a boil for 14 years now. Everytime I went to the doctor or local MEA clinic, I was told to take the prescribe antibiotics...
    tjuane tjuane 31-35, F 12 Responses Apr 26, 2013

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    A Song That Made My Jaw Drop Open And Tears Billow Up In My Eyes! Somebody Understands!

    HI! HS is nuts, crazy and something I think insurance companies/healthcare physicians should take more seriously than they do now. It seems like because it is so rare and people are so quiet about this it gets swept under rugs everywhere. In society today we are told that perfect...
    azera26 azera26 31-35 11 Responses Sep 23, 2011

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    No Diagnosis Until 3 Months Ago!

    Hi, I have HS and I have been dealing with this condition since I was 20 years old. I was always told by family and various women; it's something all women have, you may have contaminated blood or it's because you are big boned. I can remember the day I finally gave in to the...
    ZenQueen76 ZenQueen76 31-35, F 4 Responses Oct 10, 2012

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    Can I deal with this PAIN

    and sorrow for the rest of my days? Is anyone ever going to do something about it so that remission is possible or treatments are ever truly helpful? Is there enough research being done for us with HS? Does anyone truly care or are we left on the dark room by ourselves??? I have...
    Maria7780 Maria7780 31-35, F 3 Responses Feb 1

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    I have had Hidradenitis Suppurativa

    since I was 8 years old, I am now 17. I feel absolutely disgusting and alone. I just cant stand looking at myself. I cant wear tank tops and It just makes me feel that much more different. For a long time I was really depressed and I really just wanted to die. There were times...
    bel1196 bel1196 16-17, F 4 Responses Jan 15

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    I have had HS for a couple of years

    now it is terrible recently this week I decided to find ways to vent,spread MORE awareness, and hopefully just create more support groups with my blog and twitter page for HS. PLEASE help me guys this is so important to get this beat and do more than just the antibiotics and...
    armygirlfriend93 armygirlfriend93 18-21, F Dec 24, 2013

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    The Future

    I'm 15 and I have HS. It's horrible and I have in my inner thigh area. Iv had it since I hit puberty; It's pretty bad and the scars are so ugly! I really feel for anyone who's got it. I'm really worried about when I get older and how my love life (sex life) will be effected by...
    Amazing1132 Amazing1132 16-17, F 4 Responses Mar 23, 2013

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    Thankful And Worried

    Im 24 years old and Ive had this disease for about 10 years, I'm not sure how the stages are rated but i believe I'm stage 2.I only have the HS on my groin area, never my arms or breast. I didn't see a doctor or get diagnosed until I was about 19. Since then I've been on...
    freespirt02 freespirt02 22-25, F 3 Responses Nov 24, 2013

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    Hi, my name's Nichole.

    I am 26 and a Stage 3 sufferer for 5 years now, and I'm tired. I have been getting lanced and drained for years and I now have the opportunity to have the surgery, only thing is I have to stop smoking. That's easier said than done though because the stress of the condition tears...
    Nichole2688 Nichole2688 26-30, F 4 Responses Mar 10

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    It is so nice to find people just like me cause

    I feel so alone. I have had HS for 11 years and I am Hurley Stage 3 Refractory. I am in complete agony. I have hit my limit. Since August 2013 I have been hospitalized three times for superinfection and pain. I feel so disgusting and so alone and I feel like I can't talk to...
    jams0818 jams0818 31-35, F 4 Responses Feb 10

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    Finally An Answer!!

    I am 27 and have been living with this disease for almost 15 years. It started off as like little pimples and the eventually got worse. I remember my freshman year in high school I had a flare up in the middle of class. It started to continually drain and to make things worse was...
    asbrown83 asbrown83 26-30 1 Response Nov 11, 2010

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    I strongly believe I have this disease.

    I'm praying to God I don't, but if I do, I will have to live with it. I did my research and I meet all of the symptoms listed. I have been struggling with this for quite awhile. I'm too embarrassed to tell anyone. It tears me apart that I have no one I can trust to confide in. I...
    MiseryMagnet MiseryMagnet 16-17, F 5 Responses Mar 2

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    I Was Missed Diagnosed As A Teenager..

    I am a forty-four year old who had my first outbreak at 15 years old. It was extremely painful so i went to the hospital while i was there the Dr. came in and in and observe the outbreak and started laughing and said you have herpes and walked out.... i was totally devastated...
    tuscaloosa44 tuscaloosa44 41-45 1 Response Dec 17, 2012

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    Hello all! I recently purchased

    and read the ebook "Fast Hidradenitis Suppurativa Cure". Most of the information given, I already knew through my own research. The gist of it a complete dietary change, essentially eating anti-inflammatory foods and avoiding inflammatory foods. Two things were highlighted to...
    marceeh87 marceeh87 26-30 1 Response Dec 29, 2013

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    Hi, I am 17 years old

    and I have been dealing with HS for 4-5 years now. I was only diagnosed last month though because I was afraid and ashamed to tell anyone about it, including my doctor. I was so sure that I had an STD, so I couldn't possibly bring myself to tell my mom. However, now that I have...
    ab019 ab019 16-17, F 2 Responses Apr 13

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    I am in the early stage with HS,

    I would like to share what has been working for me, i have tried antibiotics, topical clindamycin, bleach baths, etc. which help a little bit. but I recently tried a rinse on my hair in the shower of apple cider vinegar, and noticed that it was helping my Hidradenitis...
    cincin21 cincin21 41-45, F 1 Response Mar 18

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    I have been suffering from this skin condition

    for about 4-5 years. It sort of began slowly progressing as I was in high school and then further on. I used to think that this problem happened because I was overweight or as I was told so, until I learned that others including both man and woman suffer from this disease...
    Dianaangel Dianaangel 18-21, F Apr 12

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    13yrs Of Hs: I'm 95% Symptom-less Now. My Story And Regimen.

    I am going to try to write this as concise as possible. I have leeched information off of HS forums for the last two years and now I would like to tell my story and the process that has helped me see about a 95% recovery. What my story doesn't include is surgery or reliance on...
    xxxMelissaxxx xxxMelissaxxx 26-30 14 Responses Jan 12, 2012

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    I've had this for 22 years.

    Pretty mild compared to some. I'll gladly share what has helped me as we go along. First and foremost - never NEVER use soap! Use Sorbolene only and you're 70% of the way there :-)
    Tracy63 Tracy63 46-50, F 1 Response Feb 23

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    I have a question for you all: is there

    something that you have found that has helped at all? Any and all suggestions are appreciated. I'm just ******* tired of this
    hs8212 hs8212 26-30, F 5 Responses Mar 9

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    Living With Hidradenitis Suppurativa

    Hello to all,      I have been living with Hidradenitis Suppurativa since 1996 but technically I wasn't diagnosed until Jan. 28,1998. I won't forget that date because it was a day after my birthday. And on, Jan. 30 I had surgery to have my Sweatglands...
    HoneyyDipp HoneyyDipp 36-40 30 Responses Apr 18, 2009

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    For Everyone With Hidradenitis Suppurativa

    a lil encouragement to you all xWhen things go wrong as they sometimes will;When the road you're trudging seems all uphill;When the funds are low, and the debts are highAnd you want to smile, but have to sigh;When care is pressing you down a bit-Rest if you must, but do not quit...
    Immy169 Immy169 26-30 4 Responses Feb 6, 2011

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    As I read most of the posts on here,

    it's disappointing to know through my own research of it that there is no cure for it. No book is going to tell you a cure. No drugs or supplements are going to cure. My own experience to keep the inflammation down is to reduce dairy products caffeine. The thing to remember is...
    Booksaremypassion Booksaremypassion 41-45, F 1 Response Apr 13