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.

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 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.

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.

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

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

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

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.

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 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!! :)ii am scheluled to see a derma. in oct,, lemme knO.. lots of love,, peaceXX Fa!thfuL

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?

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

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…

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

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 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

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

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…

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.

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.

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.

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.

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.

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?

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

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

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.

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 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!!!

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 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’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.

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.

Good on ya for having the courage to talk about your HS, and for providing this forum. As you can see, there are a whole lot of us out there who are suffering from the physical and emotional effects of this disease.

As for myself, I’m a guy who’s been suffering from HS for about 25 years. The only things that have really worked to any extent are surgery, but only in a limited fashion, and time; some lesions seem to die off after several years, but there’s a fresh crop in a new area by that time to keep me occupied. Don’t let the doctor throw antibiotics at you, in most cases they are useless, and in general they should be avoided unless there is a specific bacterial infection. Doctors that give antibiotics to people with colds should be shot IMHO.

In my experience, the biggest triggers are constricting clothes or putting areas with a lot of sweat glands in a constricted position. Examples of this are tight belts (my first trigger at age 16), tight pants that constrict the seam between the thigh and buttock, or a seating position that cuts across the backs of the thighs. Obesity is a factor in that it tends to more readily create these constricted positions. Smoking is also a factor, because it exacerbates circulation restriction.

Type 2 diabetes may be a factor in my case, again relating to reduced circulation and the slowness of healing when diabetes is uncontrolled.

One tip: Never wear the same clothes two days in a row. By doing so, you increase the chance of a constriction or abrasion from the clothes lasting long enough to induce an outbreak.

I’m starting on turmeric pills, I’m back on my meds trying to get my diabetes back under control, and I’ve quit smoking. If all this doesn’t have any effect within a couple of months, you can reach me care of the “Donut and Cigar Emporium”, ’cause I quit!

I have been living with HS for the past 8 years. I had my first “boil” (as every doctor I saw called it for the first 6 1/2 years)when I was 9 1/2 months pregnant with my son. It was on my booty, creating a hole that almost caused them not to give me an epidural because it was so close to where they were going to inject the needle. I, unlike a lot of the stories I have read, was not too ashamed to go to the doctor, and emergency room. I can’t tell you how much money I spent in co-pays for doctors to give me useless antibiotics. But I just wanted it to go away. I was having so many problems with the flare ups that I couldn’t take it anymore. I went to my regular doctor and then tried another doctor and she referred me to my derm. who wasn’t really familiar with it but had heard of it and we started from the top. cultures to make sure it wasn’t staff, taking antibiotics (still didn’t work), soaps, scrubs, powders, lotions. I have done everything! My doctor started giving me steroid shots and that helped with the inflamation. I also was able to get FMLA for work so I wouldn’t lose my job. They gave me 40 hours per month (the max that I could get). That definately helped with the stress. because I thought, even if they don’t understand it, at least I can still have insurance and support my son. So, after taking the time I needed (only when I needed it, as this is not paid time off if you do not have vacation or personal time to cover the hours) when I was hurting so bad I could not put my pants on, or walk or sit….. My job found another reason to let me go. That was a very hard time for me. I loved my job but felt like it was my fault because I have this problem that no one understands. Needless to say, I lost my insurance and seeing a dermatologist is not cheap, I had to stop getting the shots and use things I could do at home to ease the pain. I take 30 hot baths a week because it helps me. I have a problem that I am so scared of now, I am 9 1/2 months pregnant with my second child (after having 3 miscarriages in the past 7 years, I don’t know if this has anything to do with the miscarriages)and I am so affraid of how the labor and afterwards is going to be. I get them so so bad in my groin area. My OB Dr. does not have a clue about this. He says it will go away after the baby comes. The thing is, I have had it since my last child almost 9 years ago. I am pretty sure it’s not going anywhere. I want to go see the dermatologist to see if he would suggest a C-Section but I am scared that may not be any better. and what about breast feeding? since I have been preg this time, I have them under my breasts. I don’t want my baby to get this. I am freaking out about that. I can hardly move this week. I have 8-9 going in the groin area now. If I go into labor like this, what will happen? I have been really depressed thinking about it. I really think I could die from the pain. It is so hard to understand why? I am scared about this birthing thing!!!!! Can anyone tell me thier birth experiances dealing with this?

Hi,
thank you for opening up so clearly and for all the people giving advices in this website. You are truly heavenly sent! I have a question though, do the boils affect the baby during labor? My husband and I are trying to conceive, but I want to be well informed before taking the big step. I have this crazy image of a boil popping while in labor and being rubbed off by the baby. I figured I would be blunt like everyone have been so far

I have thought about “coming out of the closet” before - how brave you are! I have had this since puberty 11 y.o. I was way too embarassed to tell anyone. Finally did in High School to a family doctor who just looked at me like she didnt have a clue and maybe I needed to shower more. I did discover one thing - I must be proactive myself with this disease instead of relying on the doctors. I have been poked and prodded and injected with steroids and told to try this or that but only if I take it with this - blaghghhhh I’m so sick of feeling like a guinee pig. For years I did these “self lancings” of the boils which equals a great big SCAR. Now I just use a lancet - you know those little pokey things that people with diabetes use.Plus I also take doxycycline and an herbal supplement for my hormones called womens wellness which also helps with PMS. In short - or long I guess I think that we all have to find our own little combination that helps us because we are all different so ultimately what might work for someone might not work as well for someone else. This is my experience. Thinking of you all and praying for functionality in your lives. xoxo

I’ve had this for about 30 years now. I was not diagnosed until about 9 years ago. That doctor moved and I have yet to find one that is even willing to learn anything about it. I usually take information about HS with me to my first appointment. It’s amazing how many doctors think they know it all based on whatever they learned in med school. Most have never even seen anyone with HS!

I was wondering if anyone has tried laser hair removal? Afterall, this is a disease of the apocrine sweatglands and hair follicles. I have found that using a personal trimmer to keep the hair short (yes even under my arms) keeps the flare ups at bay as opposed to using a razor. I think a razor causes more ingrown hairs. Waxing doesn’t seem to change anything, the hairs still become ingrown.

The main reason I ask, is if I could prove at least one success story, I would be willing to lobby to not only the CDC but also to the insurance companies to make it a medically necessary procedure for those of us who suffer from it.

I was saving my money to have it done and lost my job so of course that goes on the back burner for now!

Hope to hear from someone on this!

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I just recently went through the agony of having HS. I feel for anyone who has it. This occured only under my left armpit. Mine started out as just one boil which, with antibiotics, cleared up, but two more came in its place. These got so bad I ended up having them cut open and drained. After about a week Three more came back and I was referred to a skin doctor who assured me I would need to have surgery or they would keep coming back and be worse each time they did. When I finally had the surgery, I had a total of five spots under my arm that were extemely painful and I also had cellulitis, which was swelling and red streaking on my arm that went from my underarm to almost my elbow. Since I had the surgery I have not had anymore flareups but now have numbness(because they hit a nerve when they were cutting on me), a very large scar (about 6-7 inches on my armpit), and alot of medical bills because I do not have insurance. I am so sorry and feel for all of you who are still going through this. Good luck to everyone and God bless!

Hi - I received the H news about 1 month ago, I have a mild case but I have HS. I am on Tetracycline and on my own started the Turmeric pills - (I get at Walmart 2x per day)I have noticed a huge improvement in only 1 week. I’m also using antibiotic soap. Please try the turmeric - it works. Good luck to all.

I was searching Google and was pleased to run across this page. I am 42 and have suffered from HS for about 25 years now. In my late teens I would get occasional boils under my arms and in my groing area and go to the doctor. They would lance the boils, but never told me there was anything else going on other than I seemed to get boils quite frequently without any explanation as to what might cause them (they suggested better hygiene which was not the problem). Later in my twenties I was going to community college at night and working a construction job living payday to payday without insurance. Performing manual construction labor task in the Texas heat for a living did not help and the HS became much worse over the years leaving me badly scarred. Out of necessity I would lance these boils myself to find any kind of relief and just suffer through incredible pain on a daily basis simply to earn a living. Years later when my financial situation improved and I was once again insured I found my self too embarrassed to even go to a doctor about it as I had become accustomed to being depressed, in pain, and taking care of these boils myself. It was not until about 10 years ago during a particularly bad flare that I began doing research online and discovered information about HS. I finally worked up the courage to talk to my doctor and told him what I believed was wrong. After doing some research himself he agreed with my diagnosis and began trying different treatments. Since this time I have tried everything possible including soaps, antibiotics, accutane,and almost every crack pot miracle cure or herbal remedy that comes across the web with no real success. Some things did reduce the frequency or intensity of flares so I continued with those and discontinued the treatments that didn’t help. Unfortunately there is no magical cure for this and I will probably have to deal with it for the remainder of my life as I see little evidence of anyone doing any real research into effective treatment for this disease. It has just been helpful for me to be able to finally tell someone my story as I have hidden and endured this for so many years silently and alone. Thank you so much badbadivy for having the courage to post this.

Has any one had success with the surgery? I read that in some cases it is of great help while others say they have endured nothing but painful weeks or months of recovery only to have the legions return after a short time. I fear that at some point this disease is going to force me to eventually go on disability and I have no desire to become dependent on the government for my support and medical care. But my HS may eventually force me down this path.

I am 27 years old and have suffered from HS for 18 years now. I have tried many different things to manage this horrible disease. Unfortunately I have not found many things that help. One thing that has helped me a lot is the birth control pill Yaz. I know that this pill has had a not so good reputation, but I have been on it for 2 years with great success. I used to get chronic lesions anywhere from 25-50 at any one time all over my body. When I say all over… I mean anywhere!! Six months after being on Yaz they decreased by half and were completely gone after a year of use. Recently though I have stopped taking Yaz because I no longer have health care coverage and the lesions have come back full force. I am hoping to try Tumeric because many people have found success with this and I am hoping I will too. I’m so glad to know that I am not alone and I thank everyone for sharing their stories! I hope that we all can find what works best for us!

I am a 44 year old male , have had 2 surguries on my grion since October , 4 incisions , lesions have come back after both times after about 8 weeks after each surgery .. Gonna try the skin graph next .. Thanks for the info on the Tumeric and Tea oil , gonna try this tommorrow , surgery doesn’t seem to help in my case .. Good luck everyone , see yous all in Heaven !!

I have always had horrible “ingrown hair” that I blamed on shaving. At a doctor’s advise I stopped shaving my bikini area. The problem got “better” but never went away. In the last year that the problem has become out of control. I gave birth to a beautiful baby girl and was shaved in the hospital for a c-section and I blamed the painful abscesses on that. 18 months later I could not take the pain anymore and went to my ob/gyn who sent me to a general surgeon. After he drained several of the bumps and removed 2 sebaceous cysts the surgeon put me on Amoxicillin 500 mg/twice a day as well as birth control (to regulate androgen hormones)and told me to shave everyday with a brand new razor. After shaving I was to apply an anti-perspirant to the area. Two weeks later I am almost back to 100%. Because the HS can be triggered by “hair” my insurance company is allowing me to have laser hair removal due to medical necessity!

I am 23 and have been suffering from HS for nearly 10 years. I was just diagnosed approx. a year ago. I have found (after numerous research) that taking a zinc (15mg) supplement every day helps tremendously. I haven’t had a boil flare up since I’ve been on it. Although I do still have an aweful case of HS on my face (very acne like). On my face, I have been using my homemade face scrub (equal parts of brown sugar (molasses contains zinc) and salt…with just enough shampoo to dampen it (I use suave deep cleansing…it’s a degreaser) and after I clean and scrub my face I have been using witch hazel. This routine has helped me tremendously even though it hasn’t completely gone away…it’s by far less apparent. I have read many of the comments, and there are some great recommendations. It’s such a hard disease to deal with. My advice is to be as natural as you can with the treatments…I have noticed that the boughten face cleansers (noxema, clean and clear, clearasil…etc) make it far far worse. I hope somebody finds this information helpful, good luck to all.