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I Have Hidradenitis Suppurativa

Personal Stories, Advice, and Support 1,087 People

    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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    hi, my name is abby and i'm 14.

    I've had this for two years and just recently told anyone about this. I'm so embarrassed about this. The pain is excruciating. If anyone has any tips for me that will help with the pain that would be amazing. Also if anyone knows any treatment places please tell me. Thank you...
    AbbyyB AbbyyB 13-15, F 2 Responses Jun 22

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    I was diagnosed only a few months ago

    after having mysterious "boils" for years and years. My main issue is the scarring. I have been happily married for 3 years and my husband has always been very supportive of my hidradenitis but it is still so embarrassing. I have serious scarring under both armpits so wearing...
    breeze90 breeze90 22-25, F 3 Responses Jul 26

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    I have had HS since I was 9.

    I hate this disease and because of this disease I hate myself. I find myself disgusting and ugly and no matter what I do I will always be ugly and repulsive. I just wish there was a cure so that I can be normal and live a normal life.
    ineedacceptance ineedacceptance 18-21, F 2 Responses Jun 11

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    THESE ARE MUST READS!

    !!!!!!!! hs-mytreatments.weebly.com follownaturesway.com/celiac--gluten-diseases.html
    ashleynm ashleynm 26-30, F Jun 16

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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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    PLEASE READ THIS FOR HELP I have sufferd like

    so many of you with this awful disease/condition for over 30 years. The years have been hard but manageable until the last few which have become really difficult and painful. I decided to look on this site for some answers and am so thankful that I did. Someone posted that his...
    Thereishelp4us Thereishelp4us 51-55, F 3 Responses Jun 16

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    I'm 20 years old and have been suffering with HS

    for about 4 years now. Looking at me I don't think anyone would ever guess that I struggle with this and only a handful of people know that I do. I am on two sports teams in college and not overweight, I don't smoke so that crosses those triggers out of the equation. I got sick...
    AlexandraSavannah AlexandraSavannah 18-21, F 3 Responses Jun 28

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    Hi. I'm 26 years old

    and I've had HS for ten years already. I feel so ugly and I'm extremely jealous of women who get to dress however they want. I've already forgotten the last time I wore a sleeveless outfit and I have never experienced wearing a swimsuit on a trip to the beach. It's awkward and...
    scardust scardust 26-30, F 1 Response Jun 27

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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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    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 HS. I've had it sense I was a teenager,

    it was mild considering what I'm going through now. I was hospitalized last year (2013) for a week because it ballooned to the size of a grapefruit on my left axilla. I went to the ER, it was sliced open and drained, I was treated, but it was the most pain I had ever felt due to...
    Pr1sC Pr1sC 36-40, F 6 Responses a week ago

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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 35 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 5 Responses Feb 6, 2011

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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'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

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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 22-25, F 5 Responses May 17

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    I'm currently having a really bad flareup I'm

    my armpit. My previous flareup was almost healed and I woke up yesterday morning with a golf ball sized beast in the front of my armpit, right under my bra strap. It's horrible, I can't move my arm without pain. My poor boyfriend has been helping me do just about everything and...
    Lunaro23 Lunaro23 22-25, F Aug 11

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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 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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    Mine started at the age of 13 nobody knew what

    it was the trips to the er held no answers just that it was a boil I got properly diagnosed at the age of 26 and because I had no insurance it got worst I am now 30 and have it everywhere I even had one pop up on my ear I finally saw a doctor and he's sending me to see a surgeon...
    lilacbeauty lilacbeauty 26-30, F 4 Responses Aug 4

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    NEW MEMBER HERE, so please bare with me.

    Before i go any further, I have not been Diagnosed with this yet. I am here for the support. I am a young mother of 2, and my full time working, veteran husband supports us all. I have been struggling with what i am positive is HS since i had my son in 2009, possibly, before...
    2Young2BNPain 2Young2BNPain 26-30, F 1 Response Jun 17

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    So I'm new to this so bare with me.

    . I'm 17 and I've had hs for about 4 years. It is such a constant battle to deal with. Sometimes I just wanna cry out of frustration or pain from this. I get them really bad in my underarms and sometimes I can't move. Now that summer is here, all my friends want to go to the...
    alefreyre alefreyre 16-17, F 5 Responses Jun 17

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    I was diagnosed 3 months ago

    after 10 long years of having this disease and not knowing what it was and never having a doctor that could tell me. The day I found out I was relieved to finally have a diagnosis. I cried all the way home from the doctor. HS is a double edged sword, you won't die from it but it...
    Lunaro23 Lunaro23 22-25, F 1 Response Jul 24

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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

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    I was diagnosed with Hidradenitis Suppurativa

    in January 2013. My first flare-up was under my right armpit. I went to the dermatologist thinking it was a boil that could simply be lanced. I was devastated when the dermatologist told me I had a non-curable skin disease. He immediately put me on antibiotics and told me...
    Amyhealing Amyhealing 36-40, F 1 Response Jul 10

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    Has anyone used Anikara (an antibiotic) to

    treat their HS? It's purpose is to treat arthritis. My dermatologist wants me to try it.
    Pr1sC Pr1sC 36-40, F 1 Response 5 days ago

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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 13 Responses Apr 26, 2013

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    so, my dermatologist

    and I concluded that my HS is triggered by stress. is that even a possibility.!? if so, then im going to have this for the rest of my life. theres no way, not to be stressed out. my uncle passed away last week and between all the tears and sobbing, my body broke out everywhere...
    bel1196 bel1196 16-17, F 2 Responses Aug 7

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    Witch Hazel? Has anyone tried witch hazel

    as a deodorant alternative? I try not to wear deodorants (especially antiperspirants) but living in the South it's kinda necessary in the summer months. I have read that witch hazel clears a lot of skin irritations and was just curious if anyone with HS has tried it. Witch Hazel...
    jlestep jlestep 31-35, F Aug 24

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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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    So, tonight I am in a great amount of pain,

    somehow I have gotten another abscess. It is so swollen I can hardly walk. Unfortunately it is right on my inner thigh so it rubs no matter what. Ugh. Guess it's just me and my heating pad tonight. I think this one probably got triggered by my mentstral cycle and stress.
    breeze90 breeze90 22-25, F 4 Responses Aug 11

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    I thought I would share my struggles/story

    because I have seen so many. I had my first break out of H/s on my scrotum halfway through my grade 12 year in high school. It was extremely embarrassing and it halted my social life, for awhile I thought it was an std but I was to embarrassed to tell anyone or seek help. I had...
    Harleyk11 Harleyk11 18-21, M 1 Response Jul 21

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    Hi I'm new here, but no

    where close to being new to HS. I've struggled with this horrible disease since I was about 13.. I'm now 32. An having a horrible flare up in a new area... Below my buttocks. The cyst burst but now I have this open wound that I'm at a lost on how to heal. Any suggestions would...
    MJ282 MJ282 31-35, M 2 Responses 6 days ago

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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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    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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    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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    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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    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 15 Responses Jan 12, 2012

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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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    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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    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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    Has anyone tried Collodial Silver?

    I used to be on minocycline, which worked by the way. But I kept getting horrible yeast infections and went off of it for a little while. I tried to go back on it, but it doesn't work anymore. I think the bacteria is just too strong for it. I don't really want to make my body...
    StaceyM84 StaceyM84 26-30, F 1 Response Jun 8

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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 10 Responses Mar 19, 2013

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    I have had HS since I was in ninth grade

    and it had grown worse over the years. I had a boil on my right arm pit that I had to have surgery on in 2007 when I was in 11th grade so that it wouldn't burst in my arm and the puss wouldn't circulate to my heart. It has appeared now on the side of my inner thigh, both my arm...
    texasgirl2012 texasgirl2012 22-25, F 4 Responses Jul 5

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    So my second surgery

    for these nasty things. It's funny because I live in a state where pain killers are abused so much that I didn't get any or even a dr excuse from work. 10 stitches in my armpit, my apocrine sweat glands removed and 15 days with stitches and limited mobility. Now my right arm is...
    peaceluvhappiness peaceluvhappiness 31-35, F 1 Response Jul 31

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    Hi, I just found this site.

    I've been struggling with Hidradenitis since the beginning of my fifth grade year, it's been my constant companion for ten years now. I was lucky and only had to go to three or four doctors to find out what I had. But it's still a struggle for me. I know we all struggle, I...
    Krissy2014 Krissy2014 18-21, F 2 Responses Jul 23

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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

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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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    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

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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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    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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    Has anyone tried to use Vicks vapor rub on

    their "boils" and has it worked? Also has anyone taken antibiotics that has seemed to clear up the HS? I'm 22 and my HS isn't as bad as I've seen other peoples, but I really want to get a hold of it before it gets to that point.
    brittanyxxoo brittanyxxoo 22-25, F 1 Response Jul 28

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