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I Have Hidradenitis Suppurativa

Personal Stories, Advice, and Support 1,059 People

    This sucks! I am looking

    for companionship!
    skym3 skym3 51-55, F 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 1 Response Dec 17, 2012

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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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    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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    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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    Hi, I'm Brianna. I'm 17 almost 18 years old,

    and I've been experiencing these exact symptoms since September of 2013. I used to live a normal life, and now I'm faced with the constant pain and worry or these reoccurring abbesses. I've had over 10 surgeries, and been in the hospital multiple times. It's so tiring and I feel...
    darlinbrianna darlinbrianna 18-21, F 6 Responses May 22

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    I've been battling hidradenitis suppurativa

    for 11years now. Over the past year it has become unbearable. There are days I can't even get out of bed and it is very difficult to manage with a small child. I'm at the third stage with multiple sinus tracts covering both armpits and my groin. I have had to quit my job over...
    sarah991 sarah991 22-25, F 1 Response Jun 6

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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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    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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    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 22-25, F 3 Responses Mar 9, 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 was diagnosed with Hidradenitis Suppurativa

    in January 2013. My first flare-up was under my right armpit. I went to the dermatologist thinking it was a boil that could simply be lanced. I was devastated when the dermatologist told me I had a non-curable skin disease. He immediately put me on antibiotics and told me...
    Amyhealing Amyhealing 31-35, F Jul 10

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    I thought I would share my struggles/story

    because I have seen so many. I had my first break out of H/s on my scrotum halfway through my grade 12 year in high school. It was extremely embarrassing and it halted my social life, for awhile I thought it was an std but I was to embarrassed to tell anyone or seek help. I had...
    Harleyk11 Harleyk11 18-21, M 1 Response 2 days ago

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    Having this disease for 10 years now,

    has pretty much changed my lifestyle: the clothes I wear, what I do, my attitude, my self esteem, just everything. So, I had prom this weekend, and anyone who has HS knows it is completely terrible having to find the correct clothing, ESPECIALLY something formal. Finding a dress...
    bel1196 bel1196 16-17, F 2 Responses Apr 28

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    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

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    This is a story to remind those HS sufferers

    that you are not alone. My partner of 9 years has Hidradenitis Suppurativa and it is a disease that can take over someones life if unmanaged. This condition can decrease a persons self esteem, make the person feel embarrassed, and depressed. From the painful boils that get...
    team89 team89 22-25, F 4 Responses May 24

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    I am 59 yrs old and have been being treated

    for this for a number of years now...i have seen family doctors for this who gave me antibiotics and also been to see a dermatologist...I hate this disease...yes it has depressed me at times...I recently had surgery on right armpit to remove some abcess area that was not getting...
    cstitch54 cstitch54 56-60, F May 31

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    Hi. I'm 26 years old

    and I've had HS for ten years already. I feel so ugly and I'm extremely jealous of women who get to dress however they want. I've already forgotten the last time I wore a sleeveless outfit and I have never experienced wearing a swimsuit on a trip to the beach. It's awkward and...
    scardust scardust 26-30, F 1 Response Jun 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 34 Responses Apr 18, 2009

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    So I'm new to this so bare with me.

    . I'm 17 and I've had hs for about 4 years. It is such a constant battle to deal with. Sometimes I just wanna cry out of frustration or pain from this. I get them really bad in my underarms and sometimes I can't move. Now that summer is here, all my friends want to go to the...
    alefreyre alefreyre 16-17, F 5 Responses Jun 17

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    Toward the end of High School I started getting

    by boils and scars. i would get one here and there but nothing too concerning. It went away for a few months and then when it started again, it hasn't stopped. Iv have HS for almost 8 years. occasionally when i get a large blister and i try to take care of it and bandage my self...
    BandAidGirl BandAidGirl 26-30, F 2 Responses Apr 27

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    THESE ARE MUST READS!

    !!!!!!!! hs-mytreatments.weebly.com follownaturesway.com/celiac--gluten-diseases.html
    ashleynm ashleynm 26-30, F Jun 16

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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 22-25, F 5 Responses May 17

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    PLEASE READ THIS FOR HELP I have sufferd like

    so many of you with this awful disease/condition for over 30 years. The years have been hard but manageable until the last few which have become really difficult and painful. I decided to look on this site for some answers and am so thankful that I did. Someone posted that his...
    Thereishelp4us Thereishelp4us 51-55, F 3 Responses Jun 16

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    I recommend Panoxyl for those

    who have HS. It's a cleansing shower soap with 10% Benzoyl peroxide that helps heal and prevent break outs!
    BandAidGirl BandAidGirl 26-30, F 1 Response Apr 30

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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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    Hello everyone. I have been living with HS

    for about 5 years, but I was just diagnosed last month. I get the abscesses around my breast line, and my groin area. My dr prescribed some antibiotics and topical cream, but I want a more permanent solution. I don't know a lot about this disease so any help/advice is welcomed...
    nagenr nagenr 16-17, F 2 Responses May 27

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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

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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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    As I read most of the posts on here,

    it's disappointing to know through my own research of it that there is no cure for it. No book is going to tell you a cure. No drugs or supplements are going to cure. My own experience to keep the inflammation down is to reduce dairy products caffeine. The thing to remember is...
    Booksaremypassion Booksaremypassion 41-45, F 1 Response Apr 13

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    I have been dealing with this disease

    for 20 years. I was told by a few doctors that I just needed to keep myself clean. I was so utterly embarrassed I stopped going to the doctor and "sucked up" the pain. I have since been trying doctor after doctor with no help. I have had over 100 cysts lanced in the last five...
    chrissiehope chrissiehope 41-45, F 2 Responses May 22

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    Hi everyone. I am 45,

    married almost 20 years, have one 14 year old son, multiple scars, about 6 currently active lesions, and one nerve left keeping me from a nervous breakdown. I was finally diagnosed in 2001 after the usual experience of going to doctor after doctor - most of whom thought that I...
    Deborahdga Deborahdga 41-45, F 2 Responses May 24

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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 HS since I was 9.

    I hate this disease and because of this disease I hate myself. I find myself disgusting and ugly and no matter what I do I will always be ugly and repulsive. I just wish there was a cure so that I can be normal and live a normal life.
    ineedacceptance ineedacceptance 18-21, F 2 Responses Jun 11

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    Hi Everyone. My name is Jennah

    and I'm almost 28 years old and have been suffering from HS since I was 12 years old. I have seen a plethora of doctors and specialists and have not found true compassion or a consistent plan that works. Yesterday I met with a new specialist that actually has seen and treated HS...
    simplyjennah86 simplyjennah86 26-30, F 1 Response May 14

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    I'm 20 years old and have been suffering with HS

    for about 4 years now. Looking at me I don't think anyone would ever guess that I struggle with this and only a handful of people know that I do. I am on two sports teams in college and not overweight, I don't smoke so that crosses those triggers out of the equation. I got sick...
    AlexandraSavannah AlexandraSavannah 18-21, F 3 Responses Jun 28

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    Medical Marijuana For Hs

         I have been suffering from HS for about 4-5 years now and it has slowly progressed. As those of you suffering from hs know, this is an EXTREMELY painful disease. Although some may not condone it, I choose to medicate my self with marijuana, It...
    4four2twenty0 4four2twenty0 22-25, F 21 Responses Sep 2, 2009

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    NEW MEMBER HERE, so please bare with me.

    Before i go any further, I have not been Diagnosed with this yet. I am here for the support. I am a young mother of 2, and my full time working, veteran husband supports us all. I have been struggling with what i am positive is HS since i had my son in 2009, possibly, before...
    2Young2BNPain 2Young2BNPain 26-30, F 1 Response Jun 17

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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 5 Responses Jun 16

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    I have had HS since I was in ninth grade

    and it had grown worse over the years. I had a boil on my right arm pit that I had to have surgery on in 2007 when I was in 11th grade so that it wouldn't burst in my arm and the puss wouldn't circulate to my heart. It has appeared now on the side of my inner thigh, both my arm...
    texasgirl2012 texasgirl2012 22-25, F 4 Responses Jul 5

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    I have been suffering from this skin condition

    for about 4-5 years. It sort of began slowly progressing as I was in high school and then further on. I used to think that this problem happened because I was overweight or as I was told so, until I learned that others including both man and woman suffer from this disease...
    Dianaangel Dianaangel 18-21, F Apr 12

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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 56-60 10 Responses Mar 19, 2013

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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 have just been diagnosed with HS.

    I've thought for years that I've had it since I pretty much always have a painful cyst either in my armpit or my groin. Thankfully, they've been manageable until now. Over this last week I had a mammoth cyst that over a week took over the whole side of my groin and leg and it...
    emilyo91 emilyo91 22-25, F 1 Response Jun 5

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    Not my first time writing about my condition,

    and as of right now I am on antibiotics and Humira. Honestly, it doesnt seem to be getting better, its at a complete standstill. idk what to do anymore. everyone says stay strong, keep at it, you will find yourself in the midst of all this, but seriously right now: I AM TIRED. i...
    bel1196 bel1196 16-17, F 3 Responses 5 days ago

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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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    I have been suffering from this HS

    since I was about 9 years old, which is when I began to hit puberty(way early). Of course, every doctor that I went to just said that the lumps were cysts and they would go away with antibiotics. Most of the time they didn't and I would have to have the lumps surgically...
    sunniedays89 sunniedays89 22-25, F 2 Responses Jun 8

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    Hi, I just found this site.

    I've been struggling with Hidradenitis since the beginning of my fifth grade year, it's been my constant companion for ten years now. I was lucky and only had to go to three or four doctors to find out what I had. But it's still a struggle for me. I know we all struggle, I...
    Krissy2014 Krissy2014 18-21, F 19 mins ago

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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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    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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    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 15 Responses Jan 12, 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

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    This Diet Has Worked Successfully For Me

    I have struggled with HS for years. My Doctor verified that I have mild HS (I consider myself lucky) I sympathized with those that are still trying to find a solution and the pain (physical and emotional) that one has to deal with. After doing long research, it seems that while...
    WorldTravelr WorldTravelr 31-35, M 9 Responses Oct 4, 2010

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