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    « Want To Shed That Winter Padding? | Main | Ideas For Dyeing Easter Eggs »

    March 19, 2008
    Coming Out Of The Hidradenitis Suppurativa Closet

    Ivy_2Let me warn you ahead of time. Hidradenitis Suppurativa is pretty gross- it’s basically chronic boils. Here is the Wikipedia entry about it. If this sort of stuff grosses you out, you might want to go read elsewhere, because I’m going to talk pretty frankly about it.

    I have had hidradenitis suppuritiva, or HS for short, since I was 20 years old. I was just diagnosed with HS, however, last year. This is partly due to the fact that I was embarrassed to talk to anyone about it, and then when I finally started talking to doctors about it, I was brushed off and told it wasn’t a big deal.

    The first time I got a boil, I freaked out. I was working in a mailroom for a large book distributor here in Nashville. We had 4 stations- 2 of them stations where you could sit down and 2 stations that kept you standing up all day. This, of course, happened on a week where I was at a sit down station. I developed a boil on my hiney and it made sitting horribly painful. I finally broke down and asked my mom to look at it. Let me tell you, dropping trou in front of your mother when you’re 20 years old is pretty embarrassing, but not as embarrassing as it would have been in front of a stranger. My mom just said, "Yeah, that’s a boil. I used to get them a lot when I was your age, and your grandpa had them pretty badly, too. I think it’s hereditary."

    It wasn’t that bad for many years, but after the birth of my daughter, it started getting worse and migrating from my butt and groin area to under my breasts, my armpits, and around my belly button. It went from a minor occasional annoyance to a full blown problem that sometimes causes me to be able to normally function.

    I went to several different doctors about this over the years. One doctor lanced a boil for me with no pain relief. He told me that it wouldn’t hurt that much and putting the lidocaine in would hurt more than the lancing. Well, now that I’ve had a boil lanced and drained both ways, I can say this doctor was a terrible liar. It hurt horribly without pain meds. Injecting lidocaine is uncomfortable, to be sure, but cutting me open with a scalpel with no pain meds is agony.

    Doctors tend to do that kind of stuff not to be deliberately cruel, but because they are ignorant of this disease. Like I said before- I was brushed off for years as "having a little problem with boils" before my current doctor took me seriously, did some research, and is working with me to provide the best and most painless treatment options.

    If you are suffering from chronic boils, don’t be embarrassed. Go to a doctor about it. There are treatment options although there is no known cure. If your doctor doesn’t know about this, or doesn’t have a satisfactory treatment plan for you, ask for a referral to a dermatologist. This is not something to be embarrassed about- this is something that is treatable.

    As for me, I’m combining diet and lifestyle changes (losing weight, restricting caffeine, avoiding fried foods) with antibiotic therapy and pain control. Yesterday I had a flareup so bad that I had to have the boil cut open and drained. Now we’re going to me using the antibiotic constantly to hopefully prevent flareups. Eventually, I may have to have surgery. But at least we’re on the right track.

    There’s no need to continue to suffer. No need for embarrassment. The more of us that "come out of the closet", the more awareness and hopefully more research will be done and a cure may be found.

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    Comments

    wow, that sounds so very painful…i'm glad that you've found a doctor who is now taking the situation seriously! i've had doctors not take my health conditions or concerns seriously and it sucks, to put it mildly. sending healing positive thoughts your way! :)


    To help with the embarrassment, I'll relate. I've had exactly one boil and I will never forget it. It was in a terribly private and painful area. I was 16 and went to the doctor who informed me I had an STD despite my protests, performed a painful test for said STD, and started me on several medications. A few days later I received a postcard with the information that it was merely a boil and to continue the antibiotics, but to discontinue the other medications.
    I feel for you, I really do.


    Something I find works is a lotion called clindatech. Ask your doctor about it, it helps tremendously.
    Although I see a doctor and everything, I don't wear singlets and I won't tell anyone other than my mother about it.
    I feel so ugly!
    So I am embarrassed about it, but not everyone is perfect.


    I have it too!! Way to be brave and speak about it like this. It's painful, embarrassing and very frustrating. I wish the drug companies would get on board.


    I have HS as well…I came across this blog searching on google-I wouldn't wish this condition on anyone but it's comforting to know you're not alone. Best of luck to you.
    Tricia


    I am 22 and I have had HS since I was about 13. With many wrong diagnoses I finally found out recently what exactly was wrong. I totally understand the embarrassment and shame that goes along with this condition. If anyone has some advice on some good treatments I would really appreciate it.


    hi girl, i have it too i am 22 ive had it for as long as i can remember i also was "in the closet" you are very brave and i admire you for this. i just want to say thank you and as long as were still standing were alright.


    Well, I empathise with you about this, because I am the first man to declare it publicly here. I have HS. Mine isn't even that bad, comparatively (late stage 2). Doctors generally aren't particularly compassionate in this area. Often, it looks much less bad than it feels, and the doctors I've seen often seem more concerned with getting you to come back four times a month at €50 a go, than providing any kind of adequate treatment. They are also very hesitant to prescribe you anything for your pain ("Yes, doctor, I spontaneously developed this genetic condition to exploit you for painkillers that I could buy on the street for a quarter of the price"). To be honest, HS has come to be the main focal point of my life; everything has to be planned around it, or cancelled because of it. I have made a pact that, if I ever win the lottery, I will donate half the money to research about this disease. If HS is as prevalent as people believe, and then if all the people who have it also make this pact, we all have a much higher chance of being helped someday. This disease might not kill you, but it steals your life all the same. Good luck to everyone else here; at least we're suffering together.


    Im 25 …gave birth 2 year's ago and have very sever HS….ive seen so many DR and i have been reacherching this since i waz about 10….i hit puberty when i waz 9 and it started right away….from big golf ball filled whit blood….i waz scared ..but mostly fustrated whit no cure thing..and im undergoing surgery in 4 month's..a breast reduction and a tummy tuck..i live in canada…so this will be cover …i have discuss treatment whit my famly DR,my dermatologist and plastic surgion..who are all on the same page…not only did i need to find one good DR…i need 3 …to be realy treated…all so after 2 month's of recovery…i will be going for laser hair removal to realy incress my chances of elemination this thing..i all so use proactive to clean the skin and keep it clean…2 a day (face ,arm's armpitt's…breast and under the breast…stomake…and my C-secting…ect.)and changed my life style …avoiding food's i learned trigger's break out….and not excersing to much…sweating will make it wors…but i use slimquick drink mix once a day to keep my mood up and fat off…I decided to find a cure ,,,and im doing every thing i can to make sur i am a perfect candidat for a cur…my team of DR and i are confident that this might change how to treat this….(sorry for the spelling i am french canadian )…


    Hi, I also have this HORRIBLE hidradenitis! I found your post from Google, I have been thinking about doing laser hair removal as well. How does it seem to be working out for you? Any improvements?? Thanks and good luck to you!! JG


    I have this condition too. I was diagnosed in 2003. I'm lucky I don't have the major pain requiring medication for it, but the boils I get from time to time (I'd say once a month or so) are quite painful. I usually end up "lancing" them myself and use neosporin to treat. I used to take Minocycline to keep the reoccurances down, and may start back up on that again as I've had two in the last month or so. The embarassing part for me is that over the 20 years I've been dealing with this, I've accumulated my fair share of scars (which I'd love to get rid of!).

    Anyway… What are the dietary changes/restrictions that are recommended and I've heard mentioned? I've not yet been able to find good info on that…

    Best of luck to everyone


    I have this condition too. I was diagnosed in 2003. I'm lucky I don't have the major pain requiring medication for it, but the boils I get from time to time (I'd say once a month or so) are quite painful. I usually end up "lancing" them myself and use neosporin to treat. I used to take Minocycline to keep the reoccurances down, and may start back up on that again as I've had two in the last month or so. The embarassing part for me is that over the 20 years I've been dealing with this, I've accumulated my fair share of scars (which I'd love to get rid of!).

    Anyway… What are the dietary changes/restrictions that are recommended and I've heard mentioned? I've not yet been able to find good info on that…

    Best of luck to everyone


    I too have HS. I had my first lesion at age 11. My doctor also drained it with anesthesia. I still remember the pain today! I will only drain them myself anymore. I work in a huge medical office and I am shocked when people come in with the disease how little the docs know. I of course would never tell them I am a victim of this awful curse!! How do I approach the doctor about the level of pain. I feel like they never look nearly as bad as they feel


    My GF suffers from this condition as well. Doctors have done absolutely nothing but take our money and throw pills at her and tell her surgery is the only answer.

    Having worked in alternative cancer treatment for a short while I learned that doctors are just practicing medicine and often are guessing and dont know what they are dealing with.

    some are also only pushers for the pharmaceutical companies, and or butchers who simply want to chop on everyone they can so they can make their next Lamborghini payment.

    This is not to say all are this way but, BEWARE! The medical industry is a business machine in the USA and dont be surprised if you find out they care more about making the dollar than curing you.

    I have also learned there are cures and treatments for much that ails us that nature is offering in plants and other things.

    Long story short.

    Turmeric is known to help this condition greatly if ingested about a teaspoon to table spoon in warm water is one way people do it. (Some find it's flavor a bit unpleasant but, much less so than the pain of the boils.)

    There are also turmeric pills available though some say the powder directly in warm water is the way to go. Try it!

    http://www.nutritional-supplement-truths.com/benefits-of-turmeric.html

    This site will give you good advice on turmeric and give warnings for people who may have allergies etc. Pregnant or breast feeding women should avoid it as well as people allergic to ginger or yellow coloring.

    Pure Tea tree oil applied directly to the sore and infected/effected area is also commonly recommended it should not sting and it will smell pleasant.(if you enjoy a eucalyptus like sent.)

    Some people also try plain yogurt with live cultures in it. They actually massage it into the effected area two times a day. Sometimes peoples conditions might be exacerbated by yeast on the skin. the cultures in yogurt eat yeast.

    Also I suggest all who suffer from this and are getting no help from western medicine/allopathic
    look into homeopathic treatments for boils. There are a wide range of treatments that depend on the symptoms.

    Best thing if you are clueless in this area is to try to contact a homeopathic doctor for guidance the treatments can be a bit complex and require a good knowledge of the potency treatments with some wild names and which should be if professionally done applied specifically to your symptoms and case.

    Sunlight and salt water in proper amounts have also been known for centuries to help if not out right cure MANY skin ailments that doctors have "no clue" how to treat or use poisons and other insane "cures" that often cause more problems than good.

    Do not give up! Try many things until you find what works for you. If western doctors only throw pills or say surgery is the only choice Try seeing non-western medical doctors.

    Especially eastern medicine Ayurvedic, chinese etc. See what works best for you. Surgery and pills of anti-biotics, and pain medicine to mask the symptoms is not the only answer or way to treat your illness. Find what works for you.

    Be well!
    Mr, Natural.


    I have had HS for 4 years now and it was only last year that a name was given to it after I did some research. Here in the UK doctors are embarrassed as they do not have much information but after being on course after course of antibiotics I finally went in for surgery last week.
    The Docs have cut away infected skin and I am not in any pain (thanks God!).
    I will let you all know my progress and I wish you luck!


    I too suffer from this. I am in the UK and have not been sucessful with any treatments

    http://www.hs-support.uni.cc/


    So glad I clicked on this Picture! I have suffered for years with this…my Mother had it too- looking back, I can recall her sitting over the toilet trying to lance her boils with a hot rag and needle. I have awful purple wrinkled scarring from past occurences and only lately I have been able to get them from 12-15 boils on each inner thigh area, to maybe 1-2 per leg at any given time. After going to the Doctor and getting temporary relief with Antibiotics, and having them tell me to use Dial soap- I realized they have no clue how to stop or erradicate this painful problem. I decided to try and cut SUGAR from my diet- not only did I lose 30 pounds super easily…I noticed a fast decrease in the boils- I have no idea if it was the weight loss or the sugar, or a combo. of both- but I am in way less pain. I had to quit my job because I could not sit/stand/lift due to severe discomfort. It is also preventing me from pursuing a relationship because it is making my inner thighs gross…and I am accumulating quite the collection of tubes of triple antibiotic creams, boil ease, peroxide creams, etc. The only thing I can say today is that I feel so much better knowing I am not alone. Thanks!


    Hi! Thanks for your blog, I just found out about a year ago that I have HS also. After suffering quietly for about 7 years (hello bathroom surgery!)and then speaking with a few know-nothing family physcians, I have found a dermatologist is so sweet. She listens and hands me tissues when I cry about how ugly I feel. I don't know how I can thank you for positng. Just reading the blog, and some of the comments people have left you, is more comforting than you could know.


    I have it, too. In fact, I went to a new doctor today.

    I've done EXTENSIVE research on the Web and found that the only way to resolve this issue is with scarring. For those of you that have had it a long time, you know exactly what I mean. Once a particular site scars over, you won't get anymore flare ups in that particular spot. To that end, I'm pushing my new doctor (I've seen about … oh, 20, in my lifetime to deal with this curse) to use laser therapy on the underside of my breasts. To go deep enough to affect the oil glands and essentially scar everything shut. Although my research shows that carbon dioxide lasers have been the most tested, she agreed to use the same laser as is used for hair removal. She assures me it will do the trick.

    Doctors will be hesitant to recommend this BECAUSE of the scarring issue. To which I reply, "That horse already bolted from the barn."

    The only draw back will be the cost — about $200 a visit and six visits are needed, none are covered by insurance.

    There are some that will go the route of antibiotics. From my experience this has been useless wear and tear on the inside of my body. I've tried every topical and ingested every "cycline" on the market. Some doctors will recommend Acutane, but this is a very dangerous drug. You must have your blood tested constantly to make sure you're not going toxic. Today, my new doctor said sufferers are getting relief with a new drug called Aldactone, or something like that, that is also used to treat severe acne.

    Again, I will not be going the antibiotic route because it is a stop-gap measure. Once you stop taking the drug, or at least within a few months of stopping the drug, you will need to go on it again. Pretty sure that's not what God intended for my body.

    Wish me luck and I'll report back here if the hair removal laser will do the trick.


    hi everyone,, ii am very sry tO hear yall gOng thru this.. iim 20 yrs Old ii started having this problem wen ii was 16. ii had to get surgery under both of mii arms inn 2005 b/c the skin was totaly busted open,, and itt all started wit a hard knot under mii skin. On day woke up.. and more jus kept coming! at the time I was w0rking @ mcDonals,, ii told mii boss!! lol,, he had too!! : D ii pray for uu guys!! iim sure it will go away!! ii was talkin to sum1 ii am inn lOve with.. he want to riip mii clothes off of mii and i cant let him :( ii want to marry him but iim scared ii lOst tht chance.. Anyway ii had a boil tht was lanc inn mii rear!! :) inn 2006!! itt nvr went away,, and cause more all up in ther.. caused tunnels and tracts!! all intertwind thruout mii butt,, and inside the rectum!! ii have a very severe case :D you guys your st0ries touched mii heart,, ii said a prayer,, ii kno uu will get better.. jus be carful!! use the dial soap!! drink lots! lots of water!! wash w/ soap once to twice a day,, and rinse w/ water after using the t0ilet. Take your meds on time!! and w/ maybe 2 glasses. make sure you finish them! ii wish all of you well.. by the way last month ii had surgery.. imm g0ing to hve to have 2 or more,, they open most of the areas,, put a drain n one,, and they are left open w/ dressings.. ii also hve a catheder,, and a colostomy.. sOO tht means ii dont use mii bodily functins.. they go into bags!! :D :)ii am scheluled to see a derma. in oct,, lemme knO.. lots of love,, peaceXX Fa!thfuL


    Hi Everyone, I also suffer from this curse. I am 23 and have been affected for over 10 years with it. At first my doctor diagnosed me with bad acne and i was put on an antibiotic treatment. As you probably know that didnt work it wasnt until just over a year ago that i was correctly diagnosed. I developed a golf ball size boil on the left side of the back of my neck that started oozing blood and pus all the time. I tried to lance it myself but it was past the point that i could do something about it. I went to the emergency room and had it lanced and had a wick put in to keep it open (it was already staying open) and was sent home with pain pills and antibiotics. This went on for over 6 months and countless visits to the emergency room and doctors. Finally i was diagnosed with hs and the doctor told me that he didnt know much about it and the only cure was surgery. So taking his advice i had the operation done. During this period i accrued over 30000 dollars in medical bills. Now just over a year later i have another boil on the other side of my neck about the size of a robins egg right now and in the center of my back there are about 12-15 boil all extremly large and painful. My underarms are always inflamed and my groin is as well. I have gotten so embarassed about it that i wont take my shirt off even in front of family or really good friends. It has really affected romantic relationships because i am so self concious about it. I was told that witch hazel can help with ingrown hairs and that sometimes it can help with hs. We need to get the word out about this disease and try to find a cure. Thank you for this blog i dont feel nearly as alone now.


    I've suffered from boils in the groin area since adolescence. In my thirties, the problem migrated to my armpits. I've read countless articles on this subject, and I’ve found that there’s no cure for chronic Hidradenitis suppurativa.
    However, there are things we can do to minimize and alleviate the problem. Here are some dos and don'ts:

    1. Don't rely upon antibiotics UNLESS you come down with a large boil that is causing great pain or a cluster of boils that won’t seem to heal on their own. The effects of antibiotics don't last. If you take them frequently to address a chronic problem, you will develop immunity to the pills. (Do try antibiotics if this is your first boil or if boil attacks are infrequent.)
    2. Don't squeeze hard! This drives the infection deeper into the pore and creates a larger "channel" for your next infection to develop. When boils are good and READY to drain, puss will run out with GENTLE pressure. To help draw boils to a head faster, apply a warm compress or take a hot bath to open your pores.
    3. Don't be afraid to lance boils yourself. (It’s safe if done properly, and it results in immediate relief.) To lessen the possibility of creating a large hole that could become re-infected, use the smallest sewing needle you can find. Sterilize the needle by soaking it in alcohol for at least sixty seconds. Insert slowly and gently. Do not re-insert the needle without sterilizing it again. (Do not attempt to lance "solid" boils or hard lumps under the skin. Lance boils that are visibly plump with fluids.)
    4. Do clean boil drainage from your skin with Bactene or peroxide. Drainage is loaded with bacteria that can infect open pores surrounding the original boil.
    5. Don’t shave areas that are prone to boils. Ingrown hairs from shaving are a leading cause of boils. Learn to live with hair under your arms and in the groin region. Hair is more attractive than puss filled bumps.
    6. Do keep chronic areas CLEAN AND DRY. Keep a bottle of Bactine or Iodine in the shower. Dry armpits and groin with a hair dryer to avoid that moist feeling that lingers after towel drying.
    7. Alpha Hydrox (a brand name) makes a clear fruit acid gel that is much more concentrated than most lotions containing Alpha Hydroxys. The formula is meant to lift dead skin cells on your face, unclog pores and reduce the appearance of fine lines. On a whim, I used this product under my arms. I saw a dramatic improvement the very next day. The product won’t exactly cure a large boil overnight, but it does shrink pores and eliminate small bumps from infected hair folicles. When I use it religiously, my small bumps don’t grow into big boils.
    7. I’ve also tried the Proactive Acne System under my arms. It didn’t work, and it left my skin so dry that it flaked for days.

    Other Thing's I've Learned:

    1. There’s a strong correlation between boils and menstrual cycles. The fluids running through your pores become thicker before a period, resulting in pore blockages. Boils typically slow down after menopause, but not always.
    2. There’s a correlation between obesity and boils. Losing a significant amount of weight may lessen the problem for several reasons. A) Healthy bodies have stronger immune systems that are more capable of attacking infections, including infections of the skin. B) Losing weight can reduce the severity of rubbing and chafing, especially in the thigh area.
    3. No, losing weight won’t fix everything. Many thin people suffer from chronic boils and skin irritations.
    4. There’s a strong correlation between boils and diabetes. For this reason, I have often wondered if a low carb diet could lessen the severity of chronic boils. Can anyone tell me?


    It feels so good to finally find other people who have the same thoughts going through their minds as me.
    It makes me feel a little stronger.
    18 now, living with HS for over two years, and NOT GIVING UP.


    My wife has had this condition in a mild form for years, 3 months ago we had a baby girl, she is the greatest part of our lives. After the labor she had a outbreak like never before, she went to the doc and diagnosed with H.S. we are thinking that homeopathic remedies might be worth looking at . . . .

    Also "Sara" did you have any luck with the laser scarring technique ?

    There is alot of great info on here and want to thank you all for posting


    My first outbreak of this hugely emabarrasing disease was when I was thirteen years old. I'm eighteen now, and I've given up hope of ever finding something that can help me. I'm thinking of going under surgery, I can't live in the shadows of my disease, I need to live my life, not the life this disease has made for me. I'm Mexican American, and in dire need of any help there may be out there.
    Your brave for being so honest, in a world that demands perfection. But at least I'm not the only one suffering alone, because I guess we all need directions to perfection.


    I've had this since puberty too, and I've always been so embarrassed and ashamed all my life… the only place I have it is my inner thigh area, but it's such a horrible feeling… The worst part about this is that people are always telling me how lucky I am to have "perfect" skin (at least from what they can see). Has anyone needed to seek psychological help as a result of this condition? I seriously feel so sad and depressed about it…


    I have had this disease since 1991. BBIvy - don't give up, and to everyone that has posted - hang in there by your sinus formations! (I'm really not trying to be insensitive)
    I have had as many as 27, and as few as 1 HS lesions at any given time. I have had the excision surgery, the lancings, the drainings, the antibiotics, short and long term. I also had radiation therapy. I still have this condition.
    My own dear mother is a Homeopathic Practitioner, and I use Homeopathy on a regular basis, along with Natural remedies suggested by a previous poster.
    I just want to say, good luck. The best I ever felt with this condition was after a 4 day vacation to the beach when I swam in the ocean every day.
    So, here's to all HS suffers winning the lottery and buying a huge beach house! LOL
    BBIvy, I am sorry you have this, but I am glad you posted your story. Write any time.


    OMG - I found this by accident when I was googling skin conditions….I have had this for years and been too embarrassed to go to a doc, I will make an appointment and print the description out just to show them (since its apparently rare) I have them in my arm pits, groin area and under my boobs, they flare up when I am stressed and well, I dunno when else but I will get onto it straight away, I just thought it was because I am overweight!!!! Reading this, being overweight doesn't help but it isn't the cause. Phew, I am sooo relieved


    and I forgot to say, I am 37!! I have had this mildly since I was a teen, and it has really kicked in the last few years (I have 2 teenagers) you really have no idea how good it is to see that I am not the only one. I was sure a doctor was just going to tell me I am a dirty fat woman and I just need to lose weight. *Books doctors appt* immediately!


    My husband posted about me–after the birth of our daughter 3 months ago I moved into a new stage or something. I have had occasional boils since puberty on my bikini line. They were painful, but healed within a month, and I never had more than one at a time (and seldom had more than one or two in a year). Toward the end of my pregnancy, I got a couple at once that didn't seem to be healing so the doctor drained them (which provided no relief). The day after I gave birth, my whole groin area was covered in lumps that started to drain on their own. It was excrutiating and I had no idea what was going on. Once I got the HS diagnosis, my ob/gyn and dermatologist both basically said there was no cure or treatment, and that they'd prescribe me whatever drugs I wanted, but had no idea how to help me. I've since lost over 50 pounds, consume no caffeine, have limited my sugar intake, and have had no change in the condition. I guess what I find most depressing right now is not knowing how bad it's going to get or what to do…I'm still breastfeeding, so I'm not about to start exprimenting with herbs or drugs until I stop. I really thought losing weight, eating healthy, and Dial soap would help. The pain has been waking me up some nights and the only thing that makes it bearable is ice packs. Then other days it doesn't hurt that bad at all. And now I've started getting them under my boobs. Any advice on what I could try now (or anything you've done that's helped) would be really helpful since my only source of guidance right now is the internet. Also, if anyone has a phenomenal doctor that specializes in successfully treating HS, I'm willing to fly anywhere in the country to get some help. This shit is so embarassing and gross-I am really thankful that my husband has been so supportive. And then stupid stuff makes me upset–like, will I never be able to wear a bathing suit again? Am I going to end up with a boil on my face? IS it just going to keep getting worse? Any resources would be helpful. Thanks.


    I am 25 and also have this since I was 14. I have never went to the Doctor about it beause of the area it is in . I am to embarrassed. I am not over weight and the boils seemed to slow down after birth of my children until just now. I get them in between my thighs and buttocks. It is painful and very embarrassing and I can not believe there is no cure grrr. I read only 1% of people havve them I don't believe that I think only 1% say they have them. I did notice that after I quite smoking that I had them less often. I have been smoking off and on lately and they are back so that is a reason to never start back. I hate how it always says practice good Hygiene like people with this don't grrr. I have fine hygine that is not the problem. i also can not stand the purple and brown scars they leave anyone know of anything that can make these lighter?


    i am 19 years old and i have this HS. it started around when i was 10. doctors have not told me that i have this. rather they say i have filicolitus. but from my own research everything points to HS. like many of you i have been searching for a diagnosis for this skin condition . and every discovery i make it drains my confidence lower and lower until i realize that there is not yet a cure and i will feel trapped in my body for the rest of my days. (well, until they find a cure)! where it shows the worst on my body i am usually covered. breasts and buttocks. there are no really outbreaks significant. only scars. tons and tons of scars! ive never felt so ugly. i have been told a countless number of times of how beautiful i am and whatnot. but having HS…its almost like hearing bullshit. the only way to have these scars removed i would have to go under surgery…its a shame. its taking an emotional and physical toll on my life. im a prisoner in my own body. i pray every night for these scars to disappear from my body…

    thnx,
    Jai


    Hi there. I have this condition as well. I know how painful and frustrating it can be. I read here at http://www.earthclinic.com/CURES/hidradenitis_suppurativa.html#TURMERIC that 1 tsp of turmeric power in water 3x a day can really help. A zinc supplement twice a day I believe can help too. I have just started taking both so fingers crossed… Also, tea tree oil applied on the area is said to help. Good luck. Christy


    does anyone that suffers from this eat a lot of peanuts?


    I tried alot of the stuff that's been suggested on this site (thanks so much to everyone)(I even tried the turmeric, yuk!).
    I saturated the pad of a bandaid that covers all 4 sides with tea tree oil (Walmart, $5-6), and wore it all day. Occasionally, I'd feel a tingle, and I felt in my heart it wasn't working and the mass was getting bigger. As it turns out, it went away in a few days! It must have been reabsorbing, or something. Anyway, that was 3 months ago! I know it's not a cure, but it doesn't taste bad and it doesn't involve surgery or dumping anitbiotics into my body. I hope it works for my next outbreak, but I wanted to share with you a possible success with alternative treatment.
    Good luck!!


    Hi Everyone…
    I've been a H.S. sufferer for 21 years and 4 years ago I FINALLY got diagnosed and had the surgery. I had HS so bad bilaterally under my arms that the surgeon kind of freaked out (then yelled at me for waiting so long). I suffered in silence, lived on advil chronically during outbreaks….and I have to say, as bad as the surgery was, it was worth it. Though it does make the scars of HS go away, you have some MAJOR surgical scars and they too cause some emotionally trauma. Nothing beats being pain free though. Once in blue moon I will feel like I am getting a stray one…but knock wood, nothing serious. I too take minocycline daily for life. Hope this helps at least one person…


    Thank you for writing this. I have been suffering this for years and have been so embarrassed, I only recently mentioned it to my doctor…who was completely ignorant about it. You make me feel like I am not the freak I have been afraid I was. Thank you…


    Thank you for writing this. I have been suffering this for years and have been so embarrassed, I only recently mentioned it to my doctor…who was completely ignorant about it. You make me feel like I am not the freak I have been afraid I was. Thank you…


    Hi im the second guy on here that has it im im 22, ive had had this about a year ago and its been under my arm pit, anyway i was shy too because it broke open and it was discusting lol but i went to a couple different doctors, anyways i had to have surgery, it sucked. I couldnt even go out after the surgery now I had the boil again under my other arm pit and was looking online how to prevent it from getting bad enough to have surgery again. im glad i found this post. im gonna try some of the things that seem to help others. Thank You ALL and Good Luck.


    hey, i have HS as well. I got my first boil when i was just 11 years old. i am now about to turn 20. i never told anyone about it until this year. thats 8 years of dealing with the pain and shame all by myself. i actually diagnosed myself just by doing lots of research, then went to my doctor who confirmed my diagnosis. he offered no help. he basically told me it was never going to go away. My mother went to a homeopathic doctor who works with the feet, and he told her that it was caused by the liver. i plan on going to see him soon. he claims he can get rid of it for me. my sister has the disease as well, but shes only had it about a year. i just wish the scarring wasnt so bad. i could live with the boils as mine arent debilitating. good luck to you though, i hope your treatments work.


    Hello, I have HS. I have had it since I was 15. I am 29 now. Last year they finaly found out what it was. HS has cause my life to go down. I am so depressed. Nothing is helping me. My BF of 13 years just recently left ne because of the ugly scars it leaves on my body. Sometimes I can not go to work cause it hurts so bad. I dont know what else to do. I am going to ask my Dr. and see if they can giveme some type of surgey so I can get my life back.


    I am 22 years old and developed HS when I was 13. It developed on my face, my back, and under my arms. For years I thought that I had terrible acne. I went to the OB/GYN at my local health department (yay, no insurance) about 2 years ago… which is always a horrible experience for me when I have to tell the doctor not to be alarmed because I have been breaking out horribly since I was 13. The jamaican male doctor who was tending to me brought people in too look at me naked, then told me with a big shit-eating grin that I had HS and proceeded to show me pictures of it online. The whole time laughing because he had never seen an actual case! Needless to say, I got to tell my whole family including my husband that I have an incurable skin disease that affects 1% of the population and that will continue to disfigure me until I'm dead. I also haven't had an annual since. I also did get pregnant at one point but mis-carried after 3 months due to stress (not stress from my skin) but the hormone changes caused me to break out on my cleavage and chest for a year after the fact. WOO! Go HS. Yes, it is a horrible disease.


    Hello family
    God I want to cry right now!I so glad I decided to surf the web again after a decade of torture. I'm 22 now and it began around puberty with the same story!

    Weight loss has helped bc my thighs use to rub when I was younger and ovrweight.

    TIP:they pop up around my privates lol on road trips so for PAIN while sitting in a car/plane for hrs I use the new BLISTER BANDAIDS. It cushions and keep them from busting/stops friction and PAIN!WORTH IT!

    SARA what happened with that laser removal?

    Thx everyone for "coming out" bc tonight I know that it is NOT Staff or Acne or I used to think STD and Doctors have always dismissed it.
    This HS is Embarassing to me more than Painful at times. My bikini line looks digustingly scarred as yall know! And I think it chronically drains my energy.

    DOCTORS:Dermotoligist? Gynocologist? Plastic Surgeon? Where do I go?
    I am more hopeful! THX


    I have had HS for 32 years. My first outbreak was after the birth of my daughter.My DR. gave me a cleanser to use called Triaz. It helps better then anything so far. Only rear, groin and breasts. Knock on wood not the pits yet. Now I have a great neice who is preg at 20 and she is getting them. Pity is all I have for her.


    I have had this nasty stuff for 32 years. I just had two to come this week. This is with medicine! I get so sick of the smell that come from my breasts and the pain everytime I wipe after I pee. It is absolutly repulsive. I am 52 and it gets no better only worse!!!!!!!! Jessie


    My name is Lidia and I am 18 years old.I have had HS since I was 16 years old but it feels like I've had it for a lifetime.It started out as small little pimples on my right armpit,under my left breast AND vagina.I thought it was wierd.I had never heard of anyone having acne in those places but I figured it would go away but it only got worse.I was so ashamed and disgusted.I wanted to tell my mom so I could get help but I just couldn't.I usually do my own laundry but one day I got the flu so my mom decided to to my laundry for me and she found the pus stains under my shirts and bras.She obviously freak out,came into my room and asked me what that was.I didn't know what to say.She told me to take off my shirt so she could have a look.She was horrofied by what she saw.She took me to see a doctor the next day.He explained to me what I had and prescribed me some antibiotics.I was reliefed.I though I was going to be ok.But the antibiotics did nothing.Those lumps only got bigger and more tender.I got to a point where I could bearly put my arms down.Under my left breats and my vagina looked deformed and swollen with all the lumps.But I still couldn't tell my mom that I had it on my vagina too.We finally got tired of not seeing any results so we went to another doctor.He told me he was gonna have to cut out the infected area on my armpit.It wasn't as bad under my breats so he decided not to operate.I had my surgery june 12,2008.I was put on the wound vac.Its a sponge that goes inside your wound helping drain it and helps it close.My wound measured 13×15cm and was deep enough to put a fist inside.I had a nurse come and change the sponge every 3 days.Having that sponge ripped out of my wound was so painfull I can't even describe it.The night before the nurse would come I would cry in fear.I just wanted to run away.I tried to stay calm while she changed my dressing but I couldn't.I would scream from the pain,shake,cry.It was hell.I was on the wound vac for 35 days.I had to carry it with me everywhere.I didn't feel human.On July 17 I had a skin graph with an artificial skin.The good thing is I didn't have to be on the wound vac anymore.I just had a dressing on my would with gauze and tape.Changing it hurt a little but not anywhere close to that machine.I was just happy not to have to carry that machine and go through the horror of having that sponge ripped out of my wound.I got a lot better under my breast but my vagina was still full of tender lumps wich was very uncomfurtable.My mom noticed something was wrong and told me to undress and let her see.She couldn't understand why after everything I still didn't tell her about that.She begged me to please not hide anything from her anymore and that she loved me and wanted to help me.I suffered a lot but I know she did too.NO parent should have to see their child go through this pain.My wound was healing slowly but very well but it was still really bad under my breast and vagina.Antibiotics didn't do anything for me so my mom had other ideas.She suggest I take hot baths everyday with hydrogen peroxide and epsom salt.That helped a lot.I stared to apply this cream called penaten under my breats and vagina and taking this anti-inflamatory pills called cataflam .That has made a world of difference.I still have a lot of scarring but all the pus and blood have been drained out and I haven't had anymore outbrakes.It's been over 6 months and my wound on my armpit is still healing but thank God it is almost closed.It is very small now.It has been a loooong,painfull process but desperate times call for desperate measures.I will have a huge scar but I don't care.Nothing can be worse than those disgusting,tender,painfull lumps I had.I know how fustrating,painfull,scary,aand emotionally draining this disease can be.You don't see an end in sight.Everyday you gotta fight a war against your own body that you have no chance of winning.But there is hope.The things I've talked about have worked for me.Don't rely on antibiotics.Find what works for you.Most important of all be strong.Don't be afraid to ask for help.If you think your doctor isn't helping GO TO ANOTHER ONE.Try diffrent creams and other home remedies until you find what works for you.What has worked for me might not work for you but there is something out there for each and everyone.You will never know unless you try.Sometimes we just need to cry and that's ok.Talk to a relative or close friend.The worst thing you can do is keep it to yourself.The earlier you treat this the easier it is.I learned it the hard way.But don't think you are doomed to a life of misery and pain.Fight this!Fight it until the end.IIt feels like nobody else knows what you're going through.Thats what I though.But you are NOT alone.A lot of people suffer from this.They are just too ashamed to talk about.I know I was.But we shouldn't be.DONT BE ASHAMED DON'T BE DISGUSTED WITH YOURSELF.I know this might seem impossable especially since it affects such private areas.We can't do a lot of things other people can do.We can't wear things other people can wear.I know it's hard but we DESERVE to be happy.I decided to take this as a learning expirience.This has thought me patience.It has thought me not to be embarrased to ask for help when I need it.It has made me stronger and I pray it does the same for the rest of you.If we can face this horrable condition we can face anything.If you need someone to talk to please email me at lidiarubiasilva@hotmail.com.


    Well it's me again. I have been using Dial soap and using the Tridaz cleanser that my Dr. gave me and I have three. Two where I don't sit and one where I do. We have been out of school for 4 days due to snow and now it is time to go back to work and I have three. I get so, so, so sick of this. People saying why do you were your pants so big. It's hard to say "Because I get huge boils on my butt if I don't". Sick of it Sick of it. Jessie


    I am so happy to find this post, I am only 20, but I have been battling this for years… since puberty. I have talked to many dr.s and no one has paid any attention to me until my OB I have now for my second pregnancy. I only have pregnancy insurance, which makes my situation difficult. But I frequently have to lance my own boils that I get on my inner thighs, breasts, and armpits; If I don't, I often get severe infections around them and it starts becoming a blood infection. But, I am really glad I found this, it makes me feel not so alone, I have always been embarrassed and aside from dr.s, my husband is the only other soul who really knows… well my mom has the same issue.


    Hi my name is Tiffany i am 23 and i also suffer from HS I've had it since I was 13. The first time I ever got one it quiet frankly it scared me to death, I went to the health dept., the emergency room and my family doctor about it. But it wasn't until here recently that I found out that it was HS. Can you believe that one doctor actually told me it was because of my size. Last year I was refered to a dermatologist and I've been on several treatments including steroids and antibiotics, accutane: which caused my liver to flare up, my nose to bleed like someone had turned on a water faucet, and my face and lips to become very very dry so dry infact my lips would bleed, and the most recent treatment included antibiotics, steroids, and twice monthly injections of humira which worked great until the doc decided to take away the steroids when he done that the HS flared right back up! So now i've decided to stop the antibiotics and the humira because they obivoulsy do no good by themselves and now I'm at a point where I don't know what to do. It is a very embarrassing disorder and recently I was talking to a guy and decided to tell him about it and he hasn't talked to me since. WOW how shallow huh? That hurt like hell because being rejected because of my HS is one of my biggest fears.


    I JUST GOT DIAGNOSED TODAY WITH HS, I HAVE HAD THIS PROBLEM SINCE I WAS FOURTEEN!! AFTER 11 YEARS, GRAND TOTAL OF 35 BOILS OUT OF WHICH I HAVE HAD 12 PAINFULLY LANCED AND STUFFED. IF IT WASN'T BAD ENOUGH TO HAVE THIS MUCH PAIN, IT HAS TO BE AROUND THE MOST SENSITIVE OF PRIVATE PARTS. DOCTORS WOULD OFTEN DISMISS IT OF HAVING ANY UNDERLINING CAUSE. TODAY I HAD TO GO TO E.R. FOR YET ANOTHER BOIL (2ND TIME IN THREE MONTHS), THE DOCTOR WAS IN SUCH A RUSH THAT HE FAILED TO DISCUSS WHAT HE HAD DIAGNOSED ME WITH. ALL HE TOLD ME WAS TO SCHEDULE AN APPOINTMENT FOR SURGURY TO REMOVE THE TISSUES! WHAT! SURGURY! THATS ALL I COULD THINK. NOW WHAT?


    i have had this since i was 20 years old…. my grandmother mother and aunt all have it as well so it is hereditary….. i have had 7 surgeries under my right arm 8 under my left and have had both of my aerosols removed from my breasts…. i still suffer from the painful flare ups and im suffering with a huge one at this moment under my arm….. it refuses to drain and it hurts so bad i just want to break down and cry….. i have had this knot for over a month now with no relief from the pain….. antibiotics actually make mine worse….. im glad you posted this because it is nice to know that it is not as uncommon as doctors would like to think


    dios mio,
    i hate to see so many people traumatized by this disease but glad to know i am not alone. my heart goes out to all of us… my story is similar to many, ive had HS since puberty, but didnt know what it was until only a few years ago.

    im 33 now, so im going on 20 years with this shit. (sigh) thankfully, i dont think i have such a horrible case as some. and for once i feel lucky to be an affected man versus woman. stay strong ladies…

    what i really wanted to add to this blog was what i have learned about how HS affects me. ive had surgeries under my arm 4 times and 3 of the boils never came back, but one did. i think the surgery wasnt deep enough. but this one drains directly and comes and goes so i live with it.

    ive had a lump in my rear for a long time, that often bled but never got inflamed so i didnt really worry about it, that is until now. for the past month it has been sore and swollen and draining constantly. horribly. cant really sit or be comfortable, but i now have a few new home remedies that i read above to try out. (tumeric, tea tree compress, zinc) i was also wondering if anyone has tried treating this with acupuncture? i think i am going to talk to an eastern medicine specialist and see what they have to say. most of the early doctors had no idea what it was, and prescribed antibiotics and surgery. surgery works if the excision is deep enough and even then more might come back. im not sure if the antibiotics ever really worked. then one time i was taking antibiotics for a flare up under my arm and it upset the natural balance of flora in my intestines and i got a bacterial infection in my intestines. that was even more horrible than the HS. they said it could have killed a weak or old person. so now- NO MORE ANTIBIOTICS! but i guess surgery is an option, tho should only be a last resort.

    i self diagnosed (with the help of my mom) that i had HS maybe 4 years back and then finally met with a Dermatologist that actually had heard of it. She told me that there is no cure but surgery, and the best thing to do is learn to live with it if that was possible. up to now that was possible, but with this new flare up on my backside, im not so sure. especially if it lingers like it has been. and im not looking forward to having half my ass removed but what other options??! im looking into it right now, so wish me luck.

    mostly these boils strike with no rhyme or reason, but one thing i find might be related to my outbreaks is STRESS in my life. otherwise i find no pattern, and i am generally a heathy person (trim, active, vegetarian).

    anyway, good luck to everyone and much love & compassion to all of you! thanks so much for sharing. it really helps to hear it from other people…
    …we are in it together.
    blessings


    Thank you so much for sharing your story. I have been looking for prom dresses online (impossible to find one that covers the whole back btw lol) I had my first flare up in seventh grade, now a senior in high school I have 56 scars (including flare ups right now) mostly on my back. Let’s just say I go through at least 3 boxes of band aids everyday. Anyways, I really appreciate you sharing your story…I haven’t really talked about this until now, and I am ready to thanks to you.


    i recently found this blog and made a post, and also got some treatment ideas from other entries. i got the idea for tea tree oil from above and just wanted to share its amazing effects on my sores! i applied warm compress with tea tree and water in the evenings to my rear, and also applied some tea tree directly to the boil and the surrounding area maybe twice/day. there was a slight tingling and to my amazement the boil shrank 50% each day the past 3 days and is now almost no bother at all! i kind of slacked on the hot compress, but it was great relief. direct application seemed to work well enough on its own, was easy to do, helped with the smell, and is not time consuming.

    this isnt a ‘cure’ but i hope that tea tree oil helps me to manage/control HS outbreaks in the future. i also hope that other people will try tea tree and have similar positive responses.
    good luck and much love


    i discovered the effects of teatree on HS thru this blog and then wrote another entry to praise it, but i may have jumped the gun.

    the teatree did reduce inflamation and activity near the surface and the boil got smaller for 3 days, then afterward i feel like it just redirected its malice away from the surface (that is bad) and is growing more inward. damnit! still a pain and not going away, im not sure what to do. thank goddess its still draining. i am going to try hot soaks…


    God bless you all for putting up with this vulgar disease. I feel your pain.

    I am 32 years old and I have had HS for 15 years. If someone was claiming a miracle cure, you can be assured that I have tried it. I am now giving turmeric a go because I have read so many good things about it. I’ve tried everything else so what’s one more thing? Anyway, just wanted to let people know that I have found manuka honey to be very good for immediate relief of a very angry flare up. What i do is get a small flannel cloth, wet it and microwave it for about 30 secs to get it piping hot and then smear a tablespoon of manuka honey on it and apply it directly to my armpit. I do it just before bed and I find that it relieves the pain just enough to let me get some sleep. I hope this is helpful.


    Count me as one of the so-called rare ones. I don’t believe it is as rare as “they” say. I think many many more people have HS but are embarrassed about it or go to doctors that have no idea what we have.

    I also pop them myself. I was told to do the antiboics for life too. I know this does not work.

    Thank God I have a hubby that understands and supports me.

    Maybe one day a big Hollywood Star will get this and then maybe we will see some real research get done.

    Best of luck to all of you. Keep spreading the word.


    Here is the link to the HS main support site, since no one has posted it:

    http://www.hs-foundation.org/support/donate.htm?gclid=CIWR1fLnu5oCFQZlswodDjw8cw


    I too have this condition. I am 24 years old and have had it since I was 8 years old. When I was 9 the dr. told me it was the measles… well they never went away. Over the years dr.s have told me everything from it’s nothing to its acne. It is so embarrassing that since puberty I haven’t really worn shorts and I never wear bathing suits.


    I have recently found the spice Tumeric is the savior of this disease!!! Please do some research into it! I know you will be as thrilled as I am with the results!!! I bought mine at Wal-mart for less than $7 for 90 pills. I take 2 a day! You can buy the powder in the spice isle and put a tsp in some water and drink but I am a wimp I like the pills!!! This truley is amazing!!! PLEASE PLEASE check into it!!! You will have to continue taking it to not have any flare ups but hey I can do that!! It sure beats having to have them lanced open or having a doctor tellng you that you need better hygiene!!!


    I have had HS for about 15 years and I have done the endless cycle of antibiotics. they would work fine, but once I stopped them it wasn’t long before the flare ups came back. I finally just gave up. About 4 months ago I started the laser hair removal process on my bikini area, and let me tell you…IT HELPED!! the blackheads and huge knots are gone. I have NEVER gone this long without a flare up. It may be pricey, but I strongly suggest pursuing laser hair removal, I mean think about…a laser zaps the hair follicle down to the root, nothing in the folicle to cause unnecessary oil or blockage.
    Hope this helps.


    Wow… I think this is one of the most extensive threads regarding HS I have ever seen! I myself am 24 and have had HS since puberty around 11. I self diagnosed myself at 15 by searching the net, since the dermatologists I saw just thought it was a staph infection, because I’m overweight, and threw an antibiotics prescription and told me to use phisoderm… and of course none of it worked- which led me to searching the internet and finding out it was HS. 2 months ago was my first visit to a doc that actually treats HS patients, and I was less than thrilled with her. She sent me off with a antibiotic prescription and some hormone pills.. I decided against it since it’s never worked before. I am on probation at work from missing work so much because of HS. I’m trying to get FMLA(Family & Military Leave Act) at work so they can’t fire me for having a disability, but I don’t think I will be able to find a doc that takes it seriously. I currently use Johnson’s Soft Wash and it doesn’t seem to bring on flare ups but doesnt seem to make the normal go away either.. but at least it doesn’t dry my skin out so much! I also use Monistat anti chaffing powder.. it’s my savior. I have started to get HS pretty bad under/around my breasts and my abdomen… and it at least keeps sweating minimal. I’ve tried sticking to gonig to the gym to lose weight to see if it helps(I’ve read it helps certain people but usually not all since a lot of people unknowingly have HS because their boils are so far and in between). How am I supposed to excercise when it only brings on more flare ups… it sucks. A few years ago, me and a bunch of peopel froma yahoo HS forum group even e-mailed Oprah about the disease, and nada. I personally don’t care if I have to show the world on tv what the hell this is, none of us should have to keep on suffering because of embarassment. It needs to be widely known or no doctor’s will tackle a cure. As for those of you who are embarassed to the point of not being intimate or romantic, keep your chin up, if somebody loves you, they will love you scars and all. My fiance even complains that I try and cover-up my scars and he really has no concern about the HS other than what he can do to help me get treatment because he knows how bad it can get and how it affects me not only physically, but emotionally. Just know none of you are alone… and if everyone with this horrible disease would just come “out of the closet” we can make a step to a cure. Is anyone here in the So. Cal area? I’m in San Diego.


    I forgot to leave my e-mail address if anyone would like to talk or has advice or well anything… I know we all feel so alone in this. ltanner85@hotmail.com


    I believe I have HS. I have gotten boils during the past 4 years. I went to my doctor he told me to lose weight about 3 years ago. Anyway I didn’t know what I had since I googled skin diseases about over a month ago. I had a killer boil on my stomach. Anyway I cut cola/coffee/fried foods ate healthy and did some exercise lost 11 KG and got no boils for over 2 weeks (which is something in my case) Anyway when I stopped the the exercise and diet I got 7 boils within 3 days lol. 2 on my buttox. 1 on my side ribs 3 on my thighs and 1 on my stomach near my belly button. I used the turmeric with my diet and exercise and it was an amazing combination but I got bored of the diet and exercise but I believe its better than the boils so since today I am back on my diet and exercise and CANT WAIT TO DRINK THE TURMERIC. I used 1 tea spoon in warm water once a day but others online say 3 a day??.

    I have a question if my boils are closed right after the blood and puss are drained.. within maximum of 24 hours is it HS?

    The boils are in the same area as HS. Under armpits- small nothing big. Groin. Stomach. I have one on my upper back which is dormant dont feel it and has only white puss with no smell. I get them regularly on my thighs. & on my butt nowadays.

    I am an overweight 120 KG 22 old male.

    I don’t get open wounds so I am not sure I have the same issue or maybe its different stages I would love to be englightened.


    I can’t thank you enough for talking about this - I have found more support here than anywhere else.

    I was diagnosed ~8 years ago, and have severe scarring on my inner thighs. Through a multitude of different methods, I have been able to largely stop the boils from forming, eliminating them almost entirely from under my breasts. In that area, the best thing I could do for myself was to watch for little white worm shapes forming. If I would gently squeeze it out of a pore on one end, something akin to removing a blackhead would come out, and I could clear the tract. If I let it go too far without clearing it out, it would develop into the more problematic boils we all know. I typically have to clean the tracts once every other day.

    The groin area is a different story. No squeezing, pushing, tugging down there! All it would ever do is aggravate and inflame. I take oral antibiotics and use clindamycin cream, as well as wash with bacitracin, and it seems to keep them from forming as frequently.

    Now I have a dilemma. I have fallen deeply in love with someone, and we have not yet been intimate. I can’t stand the idea of him having to see that which makes me cringe myself. I’m going to try some home treatments, such as lemon, cucumber, honey, vitamin E, and exfoliation (lightly), and see if I can make any progress with the scarring. Overall, I know that he’ll see past it if he really loves me. I just can’t seem to get past it, myself, as I can recognize how “ugly” it is. I don’t know what to do with myself, really. Everyone, how do you handle the issues with intimacy? How do you talk about it? What do you say? Do you just SHOW them? My total lack of self-esteem in this area needs to stop. I know it does. HS is just so….evil. I can’t imagine feeling the freedom of being intimate with even something as dim as candlelight, much less the light of day. I’m horrified to face this.


    I’ve had this horrible condition affecting my armpits, buttocks and groin area, since I was 10 years old. I’m now 25. I even went through horrible and disfiguring surgery when I was 12 to have the glands in the affected areas removed. But still, nothing has changed. They stopped for a while and now they’ve returned. I feel hopeless.


    I wish I had an answer on what to say to a potential partner about the disease. I’m struggling with that myself.

    I’m also contemplating getting breast reduction/lift surgery to remove the affected area under my breasts. Nervous about it, especially since it may cause the disease to leap to another part of my body.

    I’m lucky. Despite having had this since the age of 15 (I’m now 42) I seem to have what my doctors classify as a “mild” case. Man, if this is mild! I never ever get a break from it. Not for even one week in the last 20 years, I’m determined to find some relief, but I do worry about this surgical approach.

    Any thoughts people? Has anyone else here done a breast reduction/lift to help with HS??


    Oh my god, I feel so bad for you guys. I have had terrible facial/shoulder/back acne during my teen years and I can remember the depression that went with it. It honestly has made me an avoidant person to this day, its effects on my personality will forever be with me (not to mention the facial scars). As of now as a 28 year old I have back acne and stomach acne but very well controlled by daily benzoyl peroxide applications. I came across HS because I wondered if I had it… One thing that I do, maybe it will help you guys, I take bleach baths… 1/2 cup of bleach in a full bathtub of water and sit in it for 10 minutes. Then shower. Do it for a month. Nothing to lose. Some skin conditions are caused by abnormal reactions to the presence of staph aureus (which was responsible for an abscess I had a few months ago)… which is why bleach baths treat eczema and prevent mrsa infections.

    When I had acne 12 years ago, I read in a home medicine book about this daily regimin: vitamin A in high doses 32000 units. With vitamin E (stnd dose) selenium and Zinc. I dont know if it is a coincidence or not, but I had tried everything from retin a to benzoyl peroxide to adapalene, and they never worked but when I started the above regimin, my acne cleared up within two weeks. It couldve been a coincidence, I dont know, but from a pizza face to absoultely nothing… I read somewhere that vit a decreases sebum prod. and keratinization which seems to be an exacerbating factor for HS. I havent gotten a pimple on my face since for some reason, on my back thats a diff story…

    I would start the regimin again, but vit a in doses that high are slightly dangerous, the benefits dont outweigh the consequences for me as they did 12 years ago, but if I had HS, shit, I wouldnt have a choice but to give it a try.

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