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I Have Hidradenitis Suppurativa

Personal Stories, Advice, and Support 1,162 People

    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 2 Responses Mar 16

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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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    Hello everyone. It's been a long journey,

    but after seeing 4 dermatologists this year alone I've finally found THE one! He's agreed to doing my surgery and I'm SO very grateful. I just have a few prep questions. I'll be having the deroofing/excision procedure under and in between my breasts. I was just wondering how...
    nagenr nagenr 18-21, F 6 Responses Nov 6, 2014

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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 16 Responses Jan 12, 2012

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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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    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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    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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    amacari amacari 18-21, F May 9

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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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    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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    i was just recently diagnosed with hs.

    in the last year this disease has completely ruined my life. i have lost my job, my children have to watch me suffer. i am about to loose everything i have because i have no money. then i find out i have hs after several surgeries. i get 5-7 abscesses at a time. **** this...
    htoure21 htoure21 31-35, F 1 Response May 5

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    I have had this for 38 years.

    The pain I use to have from this as EVERYONE knows is horrible. Doctor visits, staying home because I couldn't walk or wear clothes. All my pants are loose fitting cotton pants. You tell people what pain you have and they have no idea at all. I married my husband at 25 we have...
    spur56 spur56 56-60 1 Response May 4

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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 am 22 years old, and I had my first HS surgery

    when I was 16. At the time I had no idea what it was. it came on quick, but after the surgery I didn't have any breakouts for about 2 years. Once it came back I started doing research on it, only to find out that I should have been on antibiotics all this time. The hs breakouts...
    llall llall 22-25, F 1 Response Jan 7

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    I had surgery on both my armpits one week ago.

    It went well. But I decided to go without the skingraft. I heard it was longer recovery but I didn't want more scars then what HS already makes. Dr was able to pull the skin together and create closure, so that was good news to me. But yesterday morning, the left side started...
    llall llall 22-25, F 1 Response Apr 20

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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 5 Responses Mar 23, 2013

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    Just a reminder here

    that you are not alone, and you are strong! There is new research being done constantly. We can do this guys!
    Jekkasaur Jekkasaur 22-25, F 1 Response May 5

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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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    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 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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    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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    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 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 2 Responses Mar 25

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    I've actually not yet been diagnosed (I'm

    looking for a dermatologist) however my symptoms align with the images and research I've diligently applied myself to. I used to think I had cancer or an std (even though I've abstained from sex for a few years.) I am absolutely ashamed of this condition. I can no longer work...
    grindhound grindhound 22-25, T May 12

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    I have had this horrid disease now

    for 29 yrs and would appreciate anyones findings that have helped them carry on with daily life cause there is many days I just cannot anymore I am in stage 4 and the pain is just unbearable sometimes please someone find a cure
    lee25 lee25 41-45, F 6 Responses Mar 29

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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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    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 6 Responses May 17, 2014

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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 38 Responses Apr 18, 2009

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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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    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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    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 was diagnosed just a few weeks ago.

    My first really bad experience was back in September when I needed to have an abscess in my underarm drained. I got it back at Christmas and was in hospital on IV antibiotics for a few days before being released and put on oral antibiotics. I have one again now and it's looking...
    TrishaHarrington TrishaHarrington 18-21, F 1 Response Jan 20

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    Hello Family. I'm promoting my new page on

    Facebook name "Thru the Outbreaks". Hidradenitis Suppurativa. Please support and like the page, this is my way of empowering us and not the disease. Redirecting our attention on Interesting topics and Playful conversations is my motivation. I'm tired of feeling like no one...
    tjuane tjuane 31-35, F 1 Response May 13

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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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    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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