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I Have Hidradenitis Suppurativa

Personal Stories, Advice, and Support 1,235 People

    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 22-25, F 2 Responses Dec 31, 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 18-21, F 1 Response Jan 20, 2015

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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 2 Responses Aug 19, 2015

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    hi im new to all this

    and don't normally post online but thought it's worth a shot. i finally went to the doctor last week after symtoms since i was about 16. I've also had increasing facial hair which has suddenly decided to go yeti and the hair on my head has started to fall out. I've never talked...
    Flenty Flenty 26-30, F Aug 19, 2015

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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 26-30, F 3 Responses Jul 7, 2015

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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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    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'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 would love to be fully pleased during sex

    with no worries about my appearance in certain areas of my body. My boils are located mainly in my armpits. My boils are mainly flat. 85% of the time they don't bother me, they just look ugly. When you don't have to worry about the boils I think having sex would be so enjoyable...
    asingletary asingletary 31-35, F Jan 27

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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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    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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    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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    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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    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 22-25, F 5 Responses Oct 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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    I'm stage 3 HS since 11yrs old.

    2 skin graphs back to back that only successfully helped right armpit in which glands were removed and I have no feeling in that arm but it's boil free do I'm fine with that. I've had it every spot on the body imaginable. Right now today I have 1 healing on my inner left butt...
    dapshep dapshep 26-30, F Nov 20, 2015

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    Today was agony. Going to the Sprint store

    and having to sit on a chair while everyone else was standing. Going to Wal-Mart and using the scooter. I am not ready to give up and be immobile. I hope I get answers when I go to the dermatologist tomorrow.
    MrsATeaches5th MrsATeaches5th 41-45, F 1 Response Sep 20, 2015

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    Hi ladies, I have a quick question I wanted to

    ask. Has anyone gotten Brazilian laser hair removal done before? I want to do it but I'm really embarrassed of my scars, so just wanted to know if anyone else has been through this, or if anyone knows anything about this your help will be much appreciated! Thank you kindly :)
    missyorkk1 missyorkk1 18-21, F 6 days ago

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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 had hidradenitis suppurativa

    since I was 14 years old; I am 25. I am so embarrassed of the condition and ashamed of my body. I am a very strong person and hate having pity parties for myself; but sometimes I need to just talk about it. I grew up playing softball, was always active it started on my inner...
    Ldubs2290 Ldubs2290 22-25, F 3 Responses Sep 29, 2015

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    Im having a breakthrough guys.

    I have had severe HS for 12 years and its been an absolute living hell. My underarms are scarred and have different skin tones and I have always felt so disgusting because of it. And today after 12 years, I am wearing a sleeveless dress to class (I'm a sophomore in college) and...
    bel1196 bel1196 18-21, F 2 Responses Sep 3, 2015

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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 6 Responses Jul 20, 2015

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    I am having a bad few weeks no breaks in

    between breakouts on top of that I am very emotional because of the lack of understanding and no support I push myself everyday to live life and sometimes my body won't let me. I'm sick of the pain no sleep I hate looking at myself just so ****** up right now
    CamDew87 CamDew87 22-25, F 1 Response Oct 1, 2015

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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, 2015

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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, 2015

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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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    this absolutely sucks I've joined just

    for this reason and i feel like i will never be able to have a serious relationship with this who wants to have sex with someone with these things ... i have no hope I'm so embarrassed
    kaitiegirlsms kaitiegirlsms 16-17, F 4 Responses Sep 3, 2015

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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 decided to try something new

    after doing hours of research. I am on day two so I will let y'all know. I PROMISE if this works I will share my story. I am so excited and feeling confident in this new solution. I bought a line of products from a nutraceutical company and I don't want to share too much right...
    ampr111 ampr111 26-30, F Sep 12, 2015

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    Everyday I deal with a tremendous amount of

    pain. This pain is at its worst in the morning, after I wake up. I’d describe it as crippling pain. I can’t function or move properly. I’d be too occupied dealing with it to do anything else. My groins, scrotum, testicles, perineum, and inner thighs is where most of the...
    SoulCoffee SoulCoffee 26-30, M 1 Response Dec 29, 2015

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    I don't feel like I'll ever be normal

    or happy with myself with hs I'm so afraid one day someone at school will find out I want a bf I want to just be regular you know
    ELLISZHAE ELLISZHAE 16-17 Sep 4, 2015

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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 20 Responses Nov 19, 2009

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    I have had HS for a little over a year now.

    I didn't even find out what it was until maybe 6 months ago when I googled my symptoms. I don't understand why this happens. It's so frustrating. I'm so tired of feeling like I'm disgusting all the time. I have tried all kinds of creams and oils, tea tree has been the most...
    vallovesshoes19 vallovesshoes19 26-30, F 3 Responses Sep 10, 2015

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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 4 Responses Jul 20, 2015

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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 11 Responses Nov 4, 2014

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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 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, 2015

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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 only 16 and I correctly diagnosed myself

    as having Hidradenitis Suppurativa at age 14 when the doctors couldn't and quite frankly didn't care. I have been living with HS for almost 4 years now and I've been told by my dermatologist that the place I have it is extremely rare/uncommon. I have it severely between by...
    lluuccyy lluuccyy 16-17, F 1 Response Dec 22, 2015

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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 1 Response Nov 23, 2014

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    My last post on here was about a break through

    and feeling more confident and forcing myself to feel better, but lo and behold after months of very sparse, very mild breakouts, I wake up with a softball size lump in my arm. I feel like I have been hit by a semi. I am nauseous, and weak, and hysterically crying, my whole arm...
    bel1196 bel1196 18-21, F Dec 5, 2015

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    I am 35 now and been going through this

    since HS. It started with one on my backside; it would open and heal repeatedly over the years. Then they started popping up everywhere; my head, face, underarms, legs, forearms, and the groan. This is where the major problem is now. I have had 4 since mother's day and they are...
    clh864 clh864 31-35 Oct 27, 2015

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    My cysts are clearing up!

    !!!!! Four days ago, I started taking these products from a nutraceutical company that include 3 different things. One is a juice that you take in the morning. It has all these different wild fruits and antioxidants that are anti-inflammatory and help with chronic diseases. Then...
    ampr111 ampr111 26-30, F 1 Response Sep 14, 2015

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    Having a bad day today with HS.

    It makes me anxious and depressed. I feel unable to function, work, study, sleep, or have fun. It also makes me feel ugly and unwanted. Who would want to spend any time with someone scarred physically and emotionally like me? I am sure HS group members know what I am talking...
    SoulCoffee SoulCoffee 26-30, M Sep 27, 2015

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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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