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I Have Hidradenitis Suppurativa

Personal Stories, Advice, and Support 1,146 People

    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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    ugh. today is rough. my mom mother is in the

    hospital again for the second time this month. thankfully she will be okay. it just really sucks to have to walk in these long hallways in such pain, not to mention sitting down. lol
    kelseykelllsss kelseykelllsss 22-25, F 2 Responses Nov 3, 2014

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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 26-30, F 4 Responses Mar 9, 2013

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    Hey guys, hope all is well.

    I will be having surgery on both of my armpits to remove the infected area and sweat glands due to HS. I'm kind of nervous and stoked so it's bittersweet. I'm excited because finally I will be getting some relief. I'm nervous about the recovery process and and the overall result...
    SweetT246 SweetT246 22-25, F 2 Responses 4 days ago

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    After 5 weeks of changing my diet.

    ..my HS symptoms are almost completely gone! I have completely removed all nightshades from my diet...I did cheat a couple times and ate chili peppers or soup that had potato in it and noticed flare up almost immediately after eating it. I'm absolutely positive that nightshades...
    MsUnderstanding MsUnderstanding 31-35, F 3 Responses Oct 21, 2014

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    http://www.dailystrength.

    org/c/Hidradenitis_Suppurativa/forum/12075338-hs-awareness-purple-ribbon-campaign I had no idea there was a ribbon for this .... I'm glad there is I know some of you may not wanna talk about it or want people to know... Is it very embarrassing but it's not our fault...
    MsAnonymous1 MsAnonymous1 18-21, F Nov 4, 2014

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    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 6 Responses Jul 18, 2011

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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 8 Responses Oct 3, 2008

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    I have been dealing with HS

    for about a year now maybe longer but did not realize what is was exactly until this year and the abscesses started last year after I had my son. I recently had surgery underneath my left armpit about 2 weeks ago and I am now getting a new abscess right above my left armpit. It...
    Bbarger Bbarger 22-25, F 1 Response Mar 25

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    have not posted in a while

    but lately my emotions are running. Ive recently developed a large lump on my shin and i originally thought it was a breakout but my derm. said it was just an >insert big medical term here< or in inflamed bump that is caused by my HS but it is not a breakout and only motrin...
    bel1196 bel1196 18-21, F 1 Response Mar 7

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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'm 25, newly married

    and very depressed regarding my condition. Until recently did not know anyone that shared the unfortunate experiences of hs, until finding this group. I've suffered for 10 long years with inflammations under both my arms, the whole groin area, including the sides of my vagina...
    farali farali 26-30, F 5 Responses May 17, 2014

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    I am 16 I have HS. Why me?

    Why do I have these? I'm afraid and insecure to get with guys because of my HS I'm afraid they will see it or feel and and spread rumors about me. Even think I'm disgusting. Does anyone have anyway to get rid of this.. Why don't we have a cure yet? I don't want to have to deal...
    UndertheECS UndertheECS 16-17, F 3 Responses Apr 25, 2014

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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 14 Responses Apr 26, 2013

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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 37 Responses Apr 18, 2009

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    I absolutely HATE HS !

    I just turned 18 a few months ago and have had this horrible disease since I was 15 I am a senior in high school my hs has and still is putting a damper on my senior year . I was cheering at a football game and a cyst burst on my inner thigh , it was so embarrassing leaving in...
    lsj18 lsj18 18-21, F 5 Responses Jan 31

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    well... I THOUGHT I was in remission.

    .. didn't have an outbreak for nearly 2 months because I stopped smoking. quit drinking and started eating a bit healthier. even after continuing all of that I had ALOT of stress hit me at once (parents r splitting, brother is sickly and now in the hospital, work is driving me...
    FrustratedTexan FrustratedTexan 22-25, F 2 Responses Mar 23

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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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    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 2 Responses Aug 3, 2013

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    This experience message is

    for anyone who currently suffers from Hidradenitis Suppurativa (HS). PLEASE read my entire post before commenting, I have an EXTREMELY IMPORTANT and HELPFUL message to share for anyone who resonates with this information (This is not a scam and there is no payment necessary for...
    starlits0ul starlits0ul 26-30 Nov 23, 2014

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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 61-65 10 Responses Mar 19, 2013

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    Question. Has anyone successfully gotten

    approved for disability in the state of Georgia or anywhere as a matter of fact?
    missamyraee missamyraee 18-21, F 1 Response Dec 5, 2014

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    I have HS for 23 years now.

    ...before there was a name to what I had, I was too embarrassed to talk about it to anyone. My family doctor told me this was due to not cleaning myself properly which made me even more self conscious even though this was totally untrue. There were times the pain was so intense...
    MsUnderstanding MsUnderstanding 31-35, F 4 Responses Sep 24, 2014

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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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    Ugh woke up today with the worst pain

    and soreness under my left armpit. Hello huge cyst 😢😩
    ashleynm ashleynm 26-30, F 1 Response Nov 23, 2014

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    Hey ppl read a lot many stories out here

    similar to mine. I suffered fof more than 3 yrs with HS and still i say im suffering. I tried out many kinds of medication over the period bt what finally gave me relief is starting authentic Indian, Kerala ayurvedic. Ayurvedic with controlled diet has brought relief. Its nt...
    rajthankan rajthankan 31-35, M Feb 11

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    hey everyone, im kelsey from toledo

    and i have stage three hidradenitus. i recently came across this amazing book. check it out,"the hidden plague" (on amazon) it's about hidradenitus survivors and overcomers! it also talks about how the "paleo diet" has put a lot of people's hs into remission! I'm so fed up with...
    kelseykelllsss kelseykelllsss 22-25, F 2 Responses Nov 2, 2014

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    Every since I was 15 I suffered from boils!

    I would be in the most excruciating pain, it always seem to come each time my hormones went crazy or I was super stressed on last December I went to the doctor complaining of a boil under my arm but this time he couldn't lance it he told me I had to go to a plastic surgeon the...
    lsmoth87 lsmoth87 26-30, F 1 Response Mar 24

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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, 2014

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    I have had HS for years,

    IT SUCKS!! When I was in my late teens to early 20's I went to general surgeon to have the cysts removed, unbeknownst to me and the Dr what they were. Mid 2000's I started developing csytic acne, lucky me lol. My dermotologists tried several different treatments before he put me...
    2purty4this 2purty4this 36-40, F 4 Responses Oct 9, 2014

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    Hello Everyone! Does anyone by any chance know

    if there is a place or a centre where people with HS meet or can meet in Toronto? I would like to find out. Thx.
    ejcd ejcd 51-55 2 Responses Nov 18, 2014

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    I've had HS for 11 years now,

    got it when I was seven and am going on 18 now. I'm in college, away from my family, and i have never allowed HS to control my life more than it already had. I am independent and despite having limits to what I can and cannot do, I always said HS didn't define me, but now that i...
    bel1196 bel1196 18-21, F 5 Responses Oct 20, 2014

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    Hidradenitis Supperivita

    and GLUTEN ALLERGY. I have tried everything from clindemyacin, turmeric, emuaid, lancing, Epsom salt compress/bath, benzoyl peroxide, doxicyclen, you name it. The only thing that has helped me is doing a paleo diet. I am 26/f and have had HS since I was 16. Got diagnosed last...
    ashleynm ashleynm 26-30, F 6 Responses Jun 16, 2014

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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 2 Responses Dec 17, 2012

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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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    www.gofundme.com/HSneedsacure take some time to

    know or share my story if you please. It'd be much appreciated.
    missamyraee missamyraee 18-21, F Dec 15, 2014

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    And I like sex! So this HS **** is really

    gettin old lol!! I don't know if I'm picking fights with my BF or I should legitimately be mad. So I got us both our own individual Ben & Jerry's ice cream last week for his bday, he ate his last week, I have to be in mood for sweets. I fell asleep on the couch last night & woke...
    2purty4this 2purty4this 36-40, F 12 Responses Nov 4, 2014

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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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    I was diagnosed with HS about a year ago,

    but I have struggle with it since I was in the 4th grade, the year I reached puberty. I am now 14, about to be 15, going into the 9th grade. It has really been hard for me as a teenager to dress comfortably yet in style while trying to hide my HS. Going to the beach or pool with...
    laurenblovesyou laurenblovesyou 13-15, F 2 Responses Aug 2, 2014

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    I've had hidradenitis

    for 20yrs. I smoke, am not obese, i could lose a few, but certainly not fat. I wanted to share a few things that i've noticed helped me over the years. Laser hair removal in my bikini line definately helped. Keeping hydrated. Zinc supplement. I just ordered gummy skin and nail...
    princessloulou48 princessloulou48 46-50, F 1 Response Mar 16

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    Went to the surgeon yesterday & he can't do

    another surgery do to the scar tissue I have. Fortunately I am close to the HS institute so I'm gonna try there. I called them a couple weeks ago & the soonest they could get me in was MARCH! At this point I'll take what I can get.
    2purty4this 2purty4this 36-40, F 5 Responses Oct 30, 2014

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    I have had hidradenitis

    for 12 years now and I've had 2 surgeries. After trying many remedies the only thing that seems to be helping is Zinc oxide ointment and zinc gluconate tablets. I started using zinc oxide ointment; which I bought at Walmart, in September and I've notice that it healed my boils...
    Heleneee Heleneee 18-21, F 3 Responses Nov 3, 2014

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    I'm new to this kind of site

    but it means a lot to me to know that I'm not the only person going through all this. At the onset of puberty, I had very bad cystic acne which lasted well into my twenties. I was on Accutane four different times throughout the years, but the acne always came back. I've tried...
    kittiestface kittiestface 26-30, F 1 Response Aug 5, 2014

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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 5 Responses Feb 6, 2011

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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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    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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