I Have Hidradenitis Suppurativa

Personal Stories, Advice, and Support 1,243 People

    Awful! I was studying today

    and then when I stood up from my chair blood started pouring through my clothes on the carpet! My scars and wounds were irritated and it was a total mess, not to mention the awful pain that followed it. I feel crippled and disfigured by this disease. My whole life shifted from...
    SoulCoffee SoulCoffee
    26-30, M
    2 Responses Oct 14, 2015

    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

    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

    I have been struggling with Hs

    since I was 11 unfortunately I still have them at 31 I'm in constant pain going to a different dermatologist the end of march just tonight I had a nasty break out under my arm pit so I pulled out the heating pad and drew out the nasty stinky puss and as I'm looking in the mirror...
    jacischeck jacischeck
    31-35, F
    Feb 22, 2016

    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
    11 Responses Sep 23, 2011

    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

    Getting my sweat glands removed in December

    then again in April. It worked for my dad and I'm hoping it will work for me. It's starting to spread throughout my groin and it makes me so self conscious. I'm just ready to end this.
    Ablebodied Ablebodied
    18-21, F
    1 Response Oct 1, 2015

    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

    Folks, I've been suffering from this disorder

    since I was a teenager. I'm 46 now. I'm currently in remission. Here's my regimen: no nightshades, animal products, chocolate, caffeine, fructose or gluten. I know. I use a topical solution of Aloe Vera, Vitamin A, E, and C on the vulnerable area (for me, perianal). I take a...
    jenn25601 jenn25601
    46-50, F
    1 Response Apr 11, 2016

    Im currently 24 years old,

    Ive been suffering with HS since I was 16, didn't get diagnosed till last year in October & went ahead and got surgery under my arms late November due to having deformed arm pits because of all those visits to the ER to get them drained, Ever since the surgery I have been...
    HelenPaola HelenPaola
    26-30, F
    Apr 12, 2016

    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
    39 Responses Apr 18, 2009

    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
    17 Responses Jan 12, 2012

    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

    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

    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
    18-21, F
    4 Responses Sep 3, 2015
    surviving93 surviving93
    22-25, F
    1 Response Sep 11, 2015

    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
    8 Responses Oct 3, 2008

    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
    1 Response Nov 23, 2014

    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, 2015

    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

    I first got the h.s experience about 3 years

    ago. I was 11 years old in 5th grade and I noticed little pimples under my arm. I thought it would go away, but it didn't. Around the end of 6th grade was when it started progressing to my groin. It started off as just little pimples but now I have a couple of bigger ones down...
    jada123001 jada123001
    22-25, F
    2 Responses Dec 26, 2015

    had yet another flare up today!

    it's never ending! wish for a treatment that actually works!:(
    Mel1706 Mel1706
    18-21, F
    Mar 7, 2016

    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
    5 Responses Feb 6, 2011

    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

    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
    Jan 31, 2016

    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
    18-21, F
    3 Responses Aug 2, 2014

    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
    41-45, F
    10 Responses Nov 4, 2014

    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
    31-35, F
    1 Response Aug 5, 2014

    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
    Sep 4, 2015

    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
    Oct 27, 2015

    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, 2016

    Hi everyone. I'm Erica.

    31, almost 32. Fighting the condition for 9 years. Only got a diagnosis about 3 years ago. I've been put on Humira. Been on it for 6 months and two flare ups in less than a month. Treated with injection steroid for the first flare up. Needed two doses to get it calmed down...
    eljecklin eljecklin
    31-35, F
    1 Response Mar 2, 2016

    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
    10 Responses Mar 19, 2013

    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
    22-25, F
    2 Responses Feb 17, 2014

    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, 2015

    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
    10 Responses Sep 17, 2014

    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
    26-30, F
    3 Responses Sep 29, 2015

    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

    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

    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
    18-21, F
    1 Response Dec 22, 2015

    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
    2 Responses Dec 29, 2015

    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

    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

    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
    2 Responses Jul 7, 2015

    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

    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


    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

    I've had this condition

    since I was 11 years old! it's such a horrible painful thing to have to experience, the amount of times I've had to go to my gp and they've googled the condition and how to treat it is awful! yes I understand doctors can't be educated in everything but when I'm explaining my...
    Mel1706 Mel1706
    18-21, F
    2 Responses Mar 6, 2016

    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
    31-35, F
    3 Responses Sep 10, 2015

    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

    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

    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

    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

    I was only diagnosed with hidradenitis

    suppurativa this week after suffering 3 years from pain and sadness. The doctors always told me that it was just acne because I also have acne. So I started taking Accutane 7 months ago and it was the worst the decision that I've ever made. I was on the treatment for 4months but...
    LionPrincess LionPrincess
    22-25, F
    Nov 20, 2015

    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

    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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