Post
Experience Project iOS Android Apps | Download EP for your Mobile Device

I Have Hidradenitis Suppurativa

Personal Stories, Advice, and Support 1,198 People

    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

    Your Response

    Cancel
    amacari amacari 18-21, F 1 Response May 9

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 26-30 8 Responses Oct 3, 2008

    Your Response

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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    allo!... does anyone here find wearing harem

    pants really helps?..atleast the material doesn't drag against the boils...luckily my workplace is chilled, so I wear them to work, but I thought it would be good to share if it helps you out, as its just something I've experimented with...
    RTrivedy RTrivedy 22-25, M Jun 14

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel
    StillSexy StillSexy 36-40, F 4 Responses Jul 20

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 5 Responses Jul 20

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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