Hi When I first started having thes things before it was diagnosed 19 years ago, they started out on my scalp. Doctors thought it was a cyst. They covered my whole head and I lost a lot of hair. Then in the places where they healed, they healed with a keloid so they never went flat down and the dermatologist says hair will never grow there again because the follicles are dead. Then progresses to my armpits, my groin and my buttocks. I think it's fair to say I have a severe case of it.
The thing is I never hear anyone say they have had it on their scalp but me and I am female so you know how devastating that must be. Is there anyone out there who has had it on their scalp or know someone who does? I feel very isolated in this. All I want is for something to flattent these keloids on my head or recommend something to grow my hair back in these areas. I used to have thivk abundant hair and now this disease has destroyed it. It makes me sad to look in the mirror and see what a evastating affect this thing has had on me and that I probably will have to live the rest of my life with these raised scars on my head and thr hair loss that comes with it. If anyone know of anything, please let me know. Thx.
I am a self diagnosed case of Hidradenitis. My MD took a culture and it came back Strep, but she never used the medical term Hidradenitis; I'm sure she is unfamiliar with it. To the woman (or anyone ) who soaks in bleach water, please don't do that: Bleach suppresses the endocrine system; not safe at all especially when sick!
My MD prescribed a short round of Penicillin which helped me, but not for long. I then switched to coconut oil (medium chain fatty acids in coconut oil kill many viruses and bacteria). I also used oregano oil, (super Strength P-73). If it doesn't say P-73 on the bottle, it may not be the right oil. I also took adaptogens (Rhodiola, schizandra, etc.) to support my adrenal glands.
OREGANO: I filled two 00 gelatin capsules twice a day for 2 days with food, then backed down to one 2x a day. I also rubbed it on the skin as much as I could tolerate throughout the day.
COCONUT OIL: I took 4-6 coconut oil gelcaps 2x a day and also rubbed it on the skin constantly. Be aware that oregano oil can cause a temporary burning sensation. After all this; there is no evidence that I ever had a boil. Praying helped too, I'm sure.
What a horrible, HORRIBLE PAIN!!!
After a lot of ineffective medical intervention and trying things that didn't work (Dial soap, Epsom salt soaks, losing weight, etc.), an herbalist finally gave me a simple remedy that has proven incredibly effective for my HS. I have had the condition in mild form for 17 years, but with my first pregnancy, progressed into a more severe stage that left me with debilitating pain, multiple legions that wouldn't stop draining, and nothing that seemed to make a difference. I lost about 60 pounds after the birth of my daughter and started eating healthy, which also didn't help. Once I stopped breastfeeding (you cannot take these herbs while pregnant or breastfeeding), I take one cup of Pau D'Arco and one cup of Red Clover tea daily. Use about 6 oz. of water for each and steep for at least 10 minutes. I saw definite results in about 2 weeks. Daily soaks in dead sea salt baths and Neosporin 3X daily on legions helps them to heal with less scarring, and the teas keep the legions from coming back. Cutting out sugar and white foods cleared it up completely. This has absolutely stymied the condition when nothing else worked and everyone swore nothing would. Give it a try! You can find both teas at your local herbalist or Whole Foods.
I must tell you my findings for HS. I have been taking a pro-biotic and now a pre-biotic which helps good bacteria grow in your gut. HS is a manifestation of your gut being off. Its not about hygiene, hormones or whatever the doctors want you to believe. They don't know. I'm telling you get a good probiotic take it 3 times a day if you are having issues with this terrible HS. I've cured myself. I decided it had to be something we all do. Antibiotics, for kids the elderly who never had HS, women, Men doing surgery which didn't help! UGG. Please get a probiotic that will start righting the very low good bacteria you have in your gut. It helps and a prebiotic is even better it helps proliferate the good bacteria and as it grows you have less HS. Don't take my word for it just start ingesting a good one. I am cured, and I live in a hot desert where I sweat. Nothing to do with HS just an easy way for the strep to get out.
Physician heal thyself. Take a responsible step to your own health. God Bless
Hidradenitis Suppurativa: Has anyone tried taking a probiotic? I have HS and recently read an article about "leaky gut syndrome". Initially eliminated gluten from my diet and started taking zinc tablets, which I had success with (not 100%). However, it is not really an option to take zinc long term and I find complete elimination of gluten to be very difficult. I have consumed gluten multiple times through cross contamination, causing a reaction.
I recently (about 2 months ago) found an article about leaky gut syndrome and started taking a probiotic twice a day, which really seems to be helping! I have not had a breakout since and I even started adding small amounts of gluten back into my diet (i.e. soy sauce, beer, boneless breaded chicken wings, etc.)!! Not sure if it is a "cure", but it helped me and worth a shot- although I am still weary of pizza and pasta dishes. Probiotics are easily available and not expensive at all, so perhaps worth a shot?
Hi I just found this site, I had my first boil (i guess you can call it that) when i was 19 I was carefree and had a rocking body and great skin I was often asked what did I use on my skin. I had a great natural golden glow, then my life slowly been to change, I usually get my boils or cysts on my back...just recently I started to get them under my breasts and in my arm pits...I never knew what I had and had no insurance to go to the derm...I finally got some school money and saw my first derm I was given no help at all. At this time my back now had bullet like holes left from the scarring, I no longer can wear backless anything...I questioned... Was I too vein in my teens and early twenties the reason this happened to me? I saw another derm...at 28 I was pregnant with my son, he told me I had HS...I live in pain...I would burst these things myself because I just could not take the throbin burnin pain another day...and oh the relief! I started to do more research because the derm I started to see didnt make me feel like he wanted to truly help me, He kinda gave me my walking papers...So next week I will meet with another...I have one on my back now! I see now that a soap or pills can not help this alone and this will be a life style change for me...I will try the dial soap my Benzoyl Peroxide is not working and my topical cream is not working, I will try the tumeric, I will also change my diet drastically...I hope my little girl does not have this, and I only got one on my upper thigh...I dont want any in any other areas in that region...but I did get them inside the checks...of you know where! but I was too embrassed too tell anyone. I thougt I had hemorrhoids. But since I'm African American there's a whole set of rules...The derm said that my hair products are most likely the cause of the cysts, but then how will I do my hair? I feel like I've lost so much of my beauty I used to model...Now I have scars on my breasts...In the folds of my cheeks of you know where...and holes and scars all over my back...I had two kids so my tummy isn't like it was when I was 22. I'm just sad, mad, a bitch some days...most days esp. when I have a cyst, but at least...I'm not alone. I guess I will try more natural hair styles but if anyone has any suggestions, post please...most of the ingredients in African American products have stuff in them that you should stay away from.
(Los Angeles, California)
Hi, I have been suffering with hs for 12 years. I hit puberty at age 13 and I am going to be 25 this month, so yeah, 12 years. I have had surgery to my left groin area due to hs, I had an abcess that lasted nearly 2 months, the surgein went in and cleared out all of the scar tissue, my incision was 4 inches long and 1 1/2 inches deep into my leg. That was the area I got my first boil in. I had recurring abcesses there maybe 10- 15 times throughout my life up until the surgery. No more boils there since then but I have had them on the opposing leg and also my butt cheeks. I have seen dermatologists, they just want to give out scripts that literally do nothing. I have found that rubbing alcohol to the area up to 4 times a day I put it on. I apply it with a q tip. I see or feel one starting now and I begin the regimen of putting it on several times a day. I have seen them disappear in two days at times. Warm baths only have ever soothed it for me, not fixed it. I think its worse when on birth control though. I did not get a flare up for months and thought well I will get back on birth control and oh my body decides to grant me two boils at once, that's my favorite... Not. This condition flat out sucks, it does, but the rubbing alcohol does help, for me anyway, there have been studies saying a tablespoon of bleach in your bath once a week helps, this is only a clinical trial though.
From what I have read there are no cures for this condition but things we can do to help prevent and treat them. In personal experience when I put my snug form fitting leggings and jeans and tights on it makes it worse, when I exercise and eat well it gets better. When I was pregnant with both of my children ther were no signs of boils, it was the longest consecutive period of time I have gone without them, two days after I had my first son I got three abcesses. It made a very happy time depressing and painful, but I have done a ton of research and have been examined by several very good doctors and dermatologists and surgeons and I have learned alot about this condition, my mother had it also, for a short time, and my sister. It has gotten better with my age, I am used to living with it now. Don't be depressed, its ok and there are many of us out there. Any questions and feel free to ask. I have only had one flare up in about 6 months, I took care of it and it was gone in about 2 days with the rubbing alcohol trick;) hope this helps.
P. S. I never write on these things but this was totally worth my time because I know how alone you feel sometimes due to this, I have been there.
(Manganui, Northland, New Zealand)
I'm 19 and have had HS ever since I can remember. I've had surgery to remove abscesses in both armpits. I remember being in grade school and not participating in gym because I could not sweat and risk having it resting on my skin all through school. My gym teachers never really believed me and just assumed I got a doctor's note because I was overweight and didn't want to exercise. This is an embarrassing disease and I'm sorry all of you had to go through it too.
Over the years, I've gotten better though. I do something that I think no one has mentioned after every shower I use sterile cotton balls and PUT RUBBING ALCOHOL on the areas that I normally get them (especially the open sores). Doctors use this to clean instruments and they go in first aids kits to cleanse burns and wounds. It sounds harsh but It doesn't make my skin dry at all. Once I started doing this, I barely even get any boils maybe one or two a month! :)
I also use softsoap antibacterial liquid soap or any other generic brand that is close. I look at the ingredient triclosan the higher it is the more antibacterial quality. I DO NOT USE bars of soap because they can carry bacteria on the surface, unlike liquid soap that comes in a bottle.
If you'd really like them to go away I would really suggest using the rubbing alcohol after showers and before bed (if you only shower in the mornings) and put on clean LOOSE clothes to sleep in. One last thing, it is very handy to put the rubbing alcohol in a medium sized spray bottle to spray on the skin during the day or anytime you apply it. (This is also great for spraying on public toilet seats to disinfect them. I also lay down toilet paper ALWAYS before sitting on public toilets) Sanitizing toilet seats (even my own toilet) before going to the bathroom has helped so much I hardly ever get sores down there anymore!
Soon I am going to start trying more natural methods like putting tea tree oil on instead of rubbing alcohol. I am also going to start taking turmeric (used in making curry) they say it has anti-inflammatory agents.
I hope this helps someone because I know how hurtful and embarrassing it is to live with this disease.
(Pennsylvania & Hawaii)
I've suffered with HS for about 6 years now and I've tried everything from Accutane to tumeric and nothing had worked until about 3 weeks ago I went to my gynecologist for my yearly check-up and during my breast exam he check my under arms.... I was so embarrased because I had band aids under my arms for the drainage. He asked me what was going on and I told him and I also explained how I had gone to several dermatologist and had paid out so much money and tried several different harsh medicines, he told me to get some salt crystal deodorant and to try that and that it would not only keep me smelling fresh, but that it will clear it up.
I tell you that my HS has cleared up 80%.... I no longer have to have all the band aids because it is drying up and there is no foul smell under my arms. I just had to share this and hope that it will help someone else that is dealing with this terrible disease. And remember GOD can heal you of this because he has healed me and I thank GOD for healing me.
(Toronto, Ontario, Canada)
(Toronto, Ontario, Canada)
(Fort Erie, Ont)
I'm wondering if there's something that will lighten up Hidradenitis Suppurativa scars? I take 3 turmeric pills a day and so far, they work great! I don't have huge breakouts anymore, but I have really dark ugly scars. I'm 17 and I'm worried that the scars will affect my future relationships. I have HS around my groin area and behind. Someone please help :(
I have been suffering from HS for the past 10 years. I have tried antibiotic, surgery, tea tree oil, antibacterial soap and it just keeps coming back worse and worse. I noticed that if I am sexually active and experience an orgasm, the very next day I will flear up. I wait few days until I feel better and again experience an orgasm and the lump comes up again the very next day. It never fails. It is very frustrating to know that I can be sexually active without having a break out. Is there any relationship between HS and sex? Any one has any information about this.
After a HS wound pops, most of the time you're left with a hole that could take months or even a year to heal up. I found this stuff called Silver Honey. It is actually use on horse/animal. But it has all natural ingrediants. If you read the reviews on Amazon, you will see more people use this stuff on themselves than they do animals. It comes in 2 forms; a cream or a spray. I bought the cream and it healed my HS wound/hole up in 8 days and it had been there for 3 months. I encourage everyone to try it. And just recently, I started getting another HS bump...I immediatly put some of the Silver Honey on it...I did this for 3 days and the bump went away.
Hidradenitis - I drink 1 cup of Organic Spearmint tea, 1 teaspoon of Manuka Honey UMF 15+ and 800mg Tumeric by capsule each day. This has eliminated my HS outbreaks.
Applying the Manuka Honey directly to the HS outbreaks has eliminated the scarring and discoloration.
Hi everyone. I am responding to questions about surgery as a treatment for HS. I am 64 years old and first started having outbreaks at age 33 with birth of my son. I went to dermatologists who would prescribe antibiotics and would lance the more serious boils as needed. As time went on the outbreaks became more severe and started to destroy the tissue under my arms leaving gaping holes that never closed up.
In 2001 I went to the dermatology dept at the va hospital in Houston and was told that I needed to see a general surgeon and was referred to that dept at the va. The Houston VA is a teaching hospital so doctors are trained there and only have short periods of residency before they move on to their final destinations in their practices. I was very lucky and had a very skilled surgeon who removed the sweat glands from under both my arms and improved the looks and health of the tissue under both my arms. The scarring from the surgery was minimal but it did take a couple of months to heal completely. The surgery was a complete success and I have not had any outbreaks since in that area.
Unfortunately, the outbreaks then started in groin and buttocks within about 4 years and I am now having the same problem in those areas as I did with my armpits. I tried to seek out another surgeon since the one who did my surgery under my arms in now in another part of the country. I have been told that they no longer use the surgery as a treatment and that I needed to take 2-3 baths daily with epsom salts and that this is the only approved treatment now and that I just needed to learn to live with it. They went on to say that surgery in the groin area an buttocks would be impossible as there are too many sweat glands and that they couldn't successfully get to them all. I feel like most of the "surgeons" I spoke to just didn't want to deal with the disease and were disgusted by it and believed that my cleanliness was the reason I had such a problem.
I had pretty much given up all hope when this week I decided to see if anything new had been discovered as a treatment for HS when I found your website. I am compiling a list of everything I have found here and intend to try everything until I get some relief. Any improvement would be appreciated whether I find a cure or not. The one thing I know is that Epsom salts does not work even if you spend the day in the bathtub. I thank God that I have found this website and pray to God that I find even a little relief. Thank you for being here. Cynthia in Richmond Tx.
(Fort Madison, Ia)
IF YOU HAVE HS PLEASE READ THIS
I have had HS for around 7 years now. Some breakouts are bad and some are bearable. I think there is really no rhyme or reason to it. Around this time of the year (summer) is when it is at its worst for me. Luckily I have not had any outbreaks since last July of 2010. It ruined my world cup experience. My doctor had prescribed me Keflex also known as Cephalexin. The problem is you can't take Keflex year around because it is a strong anitbiotic. I typically have a jelly bean size and very hard bump under my armpits. I experience discomfort but it is bearable. When the infection starts to get bad it can turn into the size of an egg until it drains. When I can feel the infection worsen I take my Keflex and it has been keeping it in check but the bump never went away. I also clean with hibiclens but from what I understand hygeine has absolutely nothing to do with it. The Keflex has had my spirits up and feeling that I could contain this. I was also prescribed clindomyacin lotion.. But... NOW READ THIS. I SWEAR IT WORKED FOR ME. I FEEL OBLIGATED TO POST THIS.. ITS UP TO YOU IF YOU WANT TO TRY IT OUT. IT IS VERY INEXPENSIVE COMPARED TO THE THROBBING ACHING PAIN WHEN IT GETS BAD..
All of my friends are aware of my problem because I decided I wasn't going to be embarrased about it anymore or let it affect my personal life. When my friend told his dad his dad told him he he had a friend that had it too and he went to countless doctors who were unsuccessful in treating it. The last time he went to the doctor (because obviously he never had to go back since this worked for him) the doctor told him to simply eat swiss cheese. I know it souds crazy but please keep on reading. Apparently Swiss chesse has a different type of bacteria than any other cheese and the reason for the holes in the cheese are because the bacteria expels gasses. Something in that counter acts what we have. I can honestly say I have no bumps and have been eating Swiss Cheese for 2 weeks now. I don't eat an insane amount but I go through about 1 lb in 3 days. I only eat the swiss cheese from Switzerland not made in Connecticut or anything like that. I don't know if they use the same process. I found it at Sams club for $1.17 per lb. , which cost around $25 a week. Someone please try it. It WORKED for me.. I do not own a cheese company or invest in any stock of any kind. I just want someone else to try it because maybe this is a coincedence... But maybe not.