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I Have Hidradenitis Suppurativa

Personal Stories, Advice, and Support 1,198 People

    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 19 Responses Nov 19, 2009

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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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    I try my best to avoid close fitting clothes

    and bright colors for fear that I would get more bumps and they would stick to the shirt. I try my hardest to lose weight but I just like food to much. and so thanks to the grease they get bigger and come more often.
    OnyxAo OnyxAo 22-25, F Jul 20

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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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    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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    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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    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 13 Responses Nov 4, 2014

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    I am currently investigating

    which procedure would be best for me to cure my HS. I have been researching various procedures over the last few months, and these are the ones that are out there. My problem is, I must keep my job so I can't have more than 4 weeks of down time or else I might as well kiss my...
    sunshine328 sunshine328 31-35, F 2 Responses Jul 9

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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 2 Responses Apr 20

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    chevonne29 chevonne29 22-25, F 1 Response Jun 26

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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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    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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    I started using hibiclens on my scars

    and it's starting to get better. I'm going to try my best to keep greasey food away. or at least downgrade what I normally eat.
    OnyxAo OnyxAo 22-25, F 1 Response Jul 22

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    Hi everyone! I am a long time sufferer of Hs.

    I've been living with this condition for 8 years. I was also always told that there's no cure. I was in an abusive relationship and this person pushed me so hard I fell and broke my ankle in 3 places. I was on crutches for months and this is how my HS started. I'd frequent...
    sunshine328 sunshine328 31-35, F 2 Responses Jul 8

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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 16-17, F 2 Responses Aug 2, 2014

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    Hs can be so hard,Im 25

    and I have been suffering for 8 years with this..it made me depressed and angry ,I even noticed me isolating myself from others because of it.it stinks,it hurts and ruins clothes.I'm so feed up..It might sounds weird but I wish I can just rip the boil socket right out of my...
    TheLovelyMe TheLovelyMe 22-25, F 3 Responses Jul 7

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    I first noticed HS in college.

    So maybe it's been about 4ish years now. It's on my groin and it's been hard to be physically intimate. Not that I have trouble finding people - guys don't seem to care - but being in the moment and not thinking about it. I was on an antibiotic and everything cleared up, but I...
    kip416 kip416 22-25, F 1 Response Aug 6

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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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    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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    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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    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 39 Responses Apr 18, 2009

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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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    Hi so im 16 and I just wrote a whole page long

    story about my HS experience but it deleted it....cool... anyways If any one who has HS wants to talk message me!
    pinkk9 pinkk9 16-17, F Jul 12

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    This heat wave is killing me.

    .. I'm having such a terrible flare up and can barely function. Anyone know good sites to buy lightweight cotton pants? Have any of you resorted to using a wheelchair when you have to move a lot?
    Jekkasaur Jekkasaur 22-25, F 1 Response May 10

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    some days I feel like I can handle the pain.

    .. other days I have to take a pain pill at work and it makes me feel like HS wins. I haven't been spot free in about 3 months (about a year without some always leaking) constant new ones, constant pain, no insurance, constant spoiled clothes, constantly having to push my bf away...
    FrustratedTexan FrustratedTexan 22-25, F 3 Responses Jul 15

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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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    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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    also just to add from my experiance of trying

    to deal with a flare up I've found that a warm bath with a fair amount of baking soda poured in (i dont measure, just sprinkle away.) really helps clear up the skin and ease the pain. should never be done more than once a week I've heard though. but i have never experienced any...
    Flenty Flenty 26-30, F 1 Response Aug 19

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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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    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 22-25, F Nov 4, 2014

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    I have HS around my groin

    and vaginal area. Im alot of pain. Doctor just told me I have it a couple days ago. I have had it for 4 years im 16 now. Want to hear from someone else with HS. Im worried if I get a boyfriend how to tell him about it. I honestly dont talk to guys because of it. I dont know... I...
    pinkk9 pinkk9 16-17, F 2 Responses Jul 12

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    I have been suffering with HS

    for 22 years. I used to be told it was sugar boils (which don't exist) and then told it was poly cystic ovarian syndrome. It took being in a coma from a massive infection that attacked my heart to formally diagnose me with HS. Over the years it has progressively gotten worse...
    3jsmommy 3jsmommy 31-35, F 3 Responses Jul 20

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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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    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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    I love these new tank tops

    that came out this summer but with these scars there is no way that it will happen. I wish there was a cure so badly
    ShayAo ShayAo 22-25, F 1 Response Jul 17

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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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    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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    Sooooo much pressure in this new sore.

    I'm sitting at my desk getting super depressed because of all the pain, just trying to survive another day.
    FrustratedTexan FrustratedTexan 22-25, F 1 Response Jun 10

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    I have had HS since I was 16.

    I am now 31. I wanted to share with you something that has worked for me. I have had HS under my breasts, armpits, groin and buttocks. So the whole shebang. The worst area by far is the groin area. My HS was very bad under the breast area until I had a breast reduction at 19...
    smoore84 smoore84 31-35, F 1 Response Jul 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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    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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    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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    StillSexy StillSexy 36-40, F 4 Responses Jul 20

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    I'm still getting bumps

    and I've had this disease for twenty years. I've found that time in the sun and swimming are helpful. It's always going to be hard but try not to let it take over your life. I still go to the nude beach and pose for nude photos for my husband. Stay clear of stress. It's the...
    StillSexy StillSexy 36-40, F 1 Response Jul 15

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    It's amazing reading the stories on here.

    Being very sick with both HS and PCOS has made my life a living hell and I feel like a freak. But I don't feel so alone now.
    Frostweaver Frostweaver 22-25, F 1 Response Aug 19

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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