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I Have Hidradenitis Suppurativa

Personal Stories, Advice, and Support 1,109 People

    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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    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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    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 2 Responses Oct 9

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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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    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 1 Response Nov 3

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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

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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

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    I have had hs for ten years now

    and am finally having surgery. They are going to take as much of the affected area as they can then leave open to heal from within(packed and bandaged) Does any body have experience of this type of op? Im terrified of the pain during recovery! Especially dressing changes! So so...
    horseygirl91 horseygirl91 22-25, F 3 Responses Sep 9

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    I have HS for 23 years now.

    ...before there was a name to what I had, I was too embarrassed to talk about it to anyone. My family doctor told me this was due to not cleaning myself properly which made me even more self conscious even though this was totally untrue. There were times the pain was so intense...
    MsUnderstanding MsUnderstanding 31-35, F 3 Responses Sep 24

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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

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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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    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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    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

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    Has anyone used Anikara (an antibiotic) to

    treat their HS? It's purpose is to treat arthritis. My dermatologist wants me to try it.
    Pr1sC Pr1sC 36-40, F 2 Responses Aug 28

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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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    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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    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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    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 13 Responses Sep 17

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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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    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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    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 16-17, F 4 Responses Nov 6

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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 18-21, F Nov 4

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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 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 3 Responses Oct 23

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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

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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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    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 2 Responses Nov 4

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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

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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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    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 have HS. I've had it sense I was a teenager,

    it was mild considering what I'm going through now. I was hospitalized last year (2013) for a week because it ballooned to the size of a grapefruit on my left axilla. I went to the ER, it was sliced open and drained, I was treated, but it was the most pain I had ever felt due to...
    Pr1sC Pr1sC 36-40, F 6 Responses Aug 26

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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 2 Responses Oct 30

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    Hi I'm new here, but no

    where close to being new to HS. I've struggled with this horrible disease since I was about 13.. I'm now 32. An having a horrible flare up in a new area... Below my buttocks. The cyst burst but now I have this open wound that I'm at a lost on how to heal. Any suggestions would...
    MJ282 MJ282 31-35, M 7 Responses Aug 27

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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

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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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    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

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    I WOULD LIKE SOMEONE CAN HELP ME OR ADVISE ME

    ABOUT THIS DISEASE. does MH works? do you know any medicine"natural" to minimize the pain??? thank you
    deleted deleted 26-30 2 Responses Sep 7

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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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    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'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

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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 36 Responses Apr 18, 2009

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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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    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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    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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    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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    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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    so, my dermatologist

    and I concluded that my HS is triggered by stress. is that even a possibility.!? if so, then im going to have this for the rest of my life. theres no way, not to be stressed out. my uncle passed away last week and between all the tears and sobbing, my body broke out everywhere...
    bel1196 bel1196 18-21, F 3 Responses Aug 7

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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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    Question. Has anyone successfully gotten

    approved for disability in the state of Georgia or anywhere as a matter of fact?
    missamyraee missamyraee 18-21, F 1 Response Dec 5

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    Witch Hazel? Has anyone tried witch hazel

    as a deodorant alternative? I try not to wear deodorants (especially antiperspirants) but living in the South it's kinda necessary in the summer months. I have read that witch hazel clears a lot of skin irritations and was just curious if anyone with HS has tried it. Witch Hazel...
    jlestep jlestep 31-35, F 1 Response Aug 24

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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

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