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I Have Hidradenitis Suppurativa

Personal Stories, Advice, and Support 1,138 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 1 Response Mar 16

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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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    kelseykelllsss kelseykelllsss 22-25, F 3 Responses Nov 2, 2014

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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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    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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    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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    They're really painful

    and often make me feel as if I won't be loved due to the uncomfortable place they're in. I had 3 numbing injections at the doctor and he completely removed everything. Nothing works and I just want them gone.
    achantal achantal 18-21, F 3 Responses Sep 21, 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 1 Response 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 2 Responses Dec 17, 2012

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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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    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 5 days ago

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    Up late can't sleep..

    . Hurts to stand up move my arms lay down. I hate this disease. Tired of trying to be strong... Feeling alone... Tired of explaining what people who don't have it wont understand... This is not acne this is much worse.. Tired of medicine that doesn't work tired of pain meds...
    MsAnonymous1 MsAnonymous1 18-21, F 4 Responses Oct 23, 2014

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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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    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 4 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 14 Responses Apr 26, 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 5 Responses May 17, 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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    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 9 hrs ago

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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 4 Responses Mar 23, 2013

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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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    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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    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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    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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    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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    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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    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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    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 16-17, F 1 Response Jan 20

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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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    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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    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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    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 5 Responses Nov 6, 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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    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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    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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    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 2 Responses Oct 21, 2014

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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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    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 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 18-21, F 12 Responses Sep 17, 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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    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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    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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    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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    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 Jan 7

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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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    Has anyone tried a hormone-stabilizing birth

    control or anything they think would help with hormonal HS flare-ups?
    ashleynm ashleynm 26-30, F 1 Response Oct 10, 2014

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