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I Have Hidradenitis Suppurativa

Personal Stories, Advice, and Support 1,186 People

    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 46-50, F 8 Responses Mar 29

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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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    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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    amacari amacari 18-21, F 1 Response May 9

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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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    StillSexy StillSexy 36-40, F 3 Responses Jul 20

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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 want to help others with this terrible

    disease. I've almost fully cured mine by myself.
    amacari amacari 18-21, F 3 Responses May 21

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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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    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 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 2 Responses Jul 20

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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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    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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    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'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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    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 Apr 14

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    I'm literally sitting here crying

    as I read all these posts. I have suffered for almost 30yrs thinking i was the only monster out there like this. This is the first time I've found support groups in my search. First one came at age 9. And have had at least one active sore on my body every day since. Mine seems...
    ruckgirl77 ruckgirl77 36-40, F 4 Responses Jul 20

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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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    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 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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    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'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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    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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    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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    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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    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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    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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    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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    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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    chevonne29 chevonne29 22-25, F 1 Response Jun 26

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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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    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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    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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    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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    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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    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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    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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    I have had stage 3 HS

    for 11 years now. When It first showed up I was so embarrassed I didn't tell anyone I was living in South Carolina at the time in foster so it wasn't like I had an actual support of a parent who was going to help figure out what It was... I kept silent for 3 years not sharing...
    MsAnonymous1 MsAnonymous1 22-25, F 11 Responses Sep 17, 2014

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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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    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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    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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    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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    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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    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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    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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