Sufferer of HS
I had my first lesion when I was 19, did not know what it was at the time, I am now 43. I was free of flare ups until I was 35, when I gained weight with my pregnancy. Since then, it has been a nightmare. I completely relate to all of you on this sight. Short version...my doctor sent me to a derm. he said it was HS..sorry can't help you, but you can take accutane! NOT!! So leaving there empty-handed and no idea what to do..I learned on my own..to live with it. The pain is unbearable, embarrassing, and completely gross! Mine started on my thighs and groin and have seem to have found their home on armpits. Oh, when I showed the derm. my boils and scars, he asked me if I had any on my armpits, I said no and he said "You will"..gee thanks.Well, he was right about one thing! So, now I have done my own wear and tear on the darn things and they have torn me up worse. I am a firm believer in Dial soap but that is the only preventive measures I ever knew about until now. I tried antibiotics, turns out I am allergic to most of them, great! Band aids..allergic to latex, too. My Dr. once told me, "Boy, did God ever give you a body to deal with".Ya think. She actually lanced one when I was having my daughter. She said not to say anything, I guess it was freebie. Well, I am sure looking forward to trying any and all of the remedies you all have mentioned on this sight. I just don't know where to start and with what doses or mixtures. Can anyone give specifics on this? I also noticed that they seem to flare with PMS, the only problem there is being premenopausal and getting my period every two weeks does not give enough time to heal between outbreaks...What else, huh? So, please, anybody...HELP!!
hi iam 24 years old and have been suffering from hidradenitis suppurativa since i was almst 18 years old. just got diagnosed about a month ago after going through one horrible surgery and getting the sweat gland under my right armpit removed. i do get the lesions at various places in my body but they are fare less than what i used to few years back.its not so painful now as maybe one gets used to the pain..but i agree it can be very embarassing specially the scarring..and dont feel like getting into any intimate relationships..with anyone..and talking about your condition with other people.
thankfully i met a dermatologist..he did diagnose me though i researched on it over the internet my doctor confirmed it was hidradenitis. he gave me certain antibiotics for a week and now iam on these pills for 3 months called sotret..supossed to shrink the sebacious glands.have been given an anti-bacto soap to bathe.since i sweat a lot a form one armpit as the other sweat gland is gone..it even omits a really bad odour.my doctor has a recommended a lotion called the no swet lotion which gradually decreases..the sweat production.
i have been taking this medicine sotret which is also called isotreniton for about a month now and i think it has started to work.real progress only happens after you have stopped with the medicines..condition improves even after that.
i used to be very overwieght at one point of time.i have lost a lot of weight and i realised it makes a major difference..while suffering from this disease however loosing weight can be quite a challenge with this disease and the lesions always flare up with the heat created by excercise.
dont know why god created this disease..but when i read about other peoples sufferings i know i am not the only one and there are people with far worse..cases.
I HAVE HAD THIS PROBLEM WITH HIDRADENITIS SUPPURATIVA SINCE MY EARLY TEENAGE YEARS, I WISH IT WOULD JUST GO AWAY. I AM 24YRS NOW AND HATE MY BODY. DOES ANYONE ELSE EVER FEEL THIS WAY. I FEEL AS IF I WERE ROBBED OF MY OWN LIFE. IF ONLY THERE WERE SOME MAGICAL PILL THAT YOU COULD TAKE ONCE AND YOUR LIFE WOULD BECOME NORMAL. I HAVE THREE KIDS (GIRLS) WHOM I HOPE THAT ONE DAY WILL NOT HAVE TO GO THROUGH THIS. I HAVE ALSO BEEN IN A RELATIONSHIP FOR OVER SIX YEARS AND STILL FEEL DISGUSTING ABOUT MYSELF WHEN AROUND HIM. ANY GOOD THOUGHTS.
WONDERFUL WEBSITE: I AM AN HS SUFFERER FOR 10 YEARS NOW, DIAGNOSED FOR 6 YEARS. I HAVE NOT REALLY BEEN TO ALOT OF DOCTORS BUT THE ONES I HAVE BEEN TO HAVE NOT REALLY HELPED. I OFTEN USE CEPHALEXIN CAPSULES. THEY HELP WITH THE ODOR WHILE TAKING THEM AND FOR ABOUT TWO DAYS AFTER THEY ARE DONE. ALSO IT KEEPS THE PAIN AND SWELLING DOWN BUT NOT FULLY. I WILL DEFINITELY TRY SOME OF THE HOMEMADE INEXPENSIVE STUFF I FOUND ON THE LINK. I AM QUITE FRANKLY TIRED OF IT.
Hidradenitis Suppurativa Remedies: Please beware of any suggestion to try ACCUTANE, if it is still being scripted. The side effects can be immediate & devastating. Please notice if summer's heat aggravates your HS. There's already an internal body heat issue, coupled with the external heat of the season. There are several Chinese herbal formulas that may be helpful, but they must be given professionally, because each person's constitution is different. PLEASE CONSULT A TRADITIONAL CHINESE MEDICAL PRACTITIONER WHENEVER YOU CAN, as there are a variety of herbal washes, tablets, & foods, that may be effective. I am trying a remedy called Coptis Detox that seems to have been of great relief in reducing the internal heat that adds to the pain of breakouts. Will report more as results develop.
Also, for the Lady & the colonics - YES/YES/YES, they are helpful too, but not without a change in intake of foods that could be aggravating the condition. Notice your intake & break-out routine, so that you can capture what triggers an outbreak. For me, for example, BEER-CITRUS-TOMATOES, much as I love all those things are guarenteed break-out starters, AS WELL AS STRESS & WT. GAIN. In fact if there's any goodness to this, it is that breakouts tell me that a weight gain of at least 10 lbs has happened...Jessy
I suffered from Hidradenitis Suppurativa about 3 years ago, in fact one sore under my arm got to the size of a baseball and my physician did an in office procedure to open it up, and if that did not work I would have had to go to a surgeon for the final draining, fortunately that worked. I swore I would not have that happen again, so I did some research. The problem seems to be linked with a skin surface yeast infection, occurring in the areas that tend to stay moist ( underarms , under the breasts, and around the groin area) so I have taken steps to treat it like a yeast infection with perfect success.
1. Stop using roll on, or stick antiperspirant. the repeated contact while infected only serves to reinfect you when you get clear, plus antiperspirant tends to clog the pores trapping the infection inside. So using a pump spray deodorant such as FDS is much more effective during the treatment.
2. Do not use antibacterial soap it actually kills the naturally occurring good bacteria that helps keep yeast infections in check.
3.Twice daily massage natural live bacteria yogurt on these areas like you would a lotion. (note: use unsweetened,unflavored natural yogurt for this, otherwise it is a sticky mess.)(you can also use an over the counter yeast infection vaginal cream for this if you prefer.)
4. Shower Daily taking care to thoroughly wash, and dry prone areas.
5. start a regimen of turmeric to help cleanse from the inside out.
Do this for 10 days and you can virtually say goodbye to Hidradenitis Suppurativa. I did all this myself and have been clear for 2 years, I have also recommended this to others with the same problem and they have also had excellent results. Even after they have repeatedly had doctors draining their sores and putting them on massive antibiotics for years.They are finally clearing up the problem.
Hiradenitis Suppurativa 1) Stop using any form of Spray on or Roll on Deoderant. Clean with soap and water in Shower (Not Bath). Use a Stick -Type of Deoderant ( and Make Sure No One Else Uses It). Make Sure that you Dry Off very good Before you apply anything and use a Different Towel after Each Shower. If Redness Persists after you have done this, Use Hydrogen Peroxide on the Affected Areas after Shower. Then use Corn Starch on them to keep them Dry. If the condition does not fade or disappear within one week, Go Directly to your Doctor.
I have had HS for about 12 years now. I have had over 20 surgeries. Doctors have cut the areas open and let them heal by themselves, took out my sweat glands under both armpits and even did skin graphs on areas they could do(In these areas I no longer have problems, bad scars yes, but I'll take it) .
Well, I cannot go in every time it pops up and I am in pain, so what I do is juice ginger and put it on the area with some gauze or sometimes I put aloe, I like to switch them off. Both of those help to pull out the disease and open by itself. This really helps a lot!
Dear All who is suffering from this horrible disease Hidradenitis Suppurativa,
I have been facing this issue since last one year and doctors say we can not help in this case even they don't understand what is causing this disease. Two weeks ago I visited my dad and he told me one remedy and I came back and tried and trust me I was surprised. It's herbal Antibiotic which seems 1000 times more effective than medical stuff.
OK try this ...I am same like you, searched on google for whole year, tried many things but nothing worked but this thing which I am going to share here. Cures me 70 % in 10 days ..
I am sure you don't believe but try it and then inform me within two weeks..within 2 3 days you will be letting me know that it's killing the disease..
Here you go
1) fresh ginger 50 grams
2) fresh garlic 25 grams
3) mint leaves 50 gram (fresh)
4) pomegranate seeds 50 grams (dried one)
Put in a blender and make a sauce; now put in an air tight jar.
Dosage:: 1 tablespoon (full) after breakfast, 1 after lunch, 1 after dinner.(with water) ...OR you can put this paste on the Bread and eat it...
Please Please for one week don't eat fast food; you will sea the result which will amaze you.. Please guys share it with everyone .. May Allah cure everyone from all the diseases... Best Of Luck Waiting for your response...
What a wonderful site! I have suffered with HS for 35 years now. Doctors are useless in treating this condition, its just antibiotics or very scary medication that I refused to take, because it was just too damaging (anything that causes massive birth defects in babies should you fall pregnant within 2 years of just taking 1 tablet can't be good!!)
I have them under my armpits where I've had 4 operations over the years to get the rotten things removed, but they always come back. I also have them in the groin and buttocks. Mine have recently changed form however, they have decided to come out as small boils all over my body now, naturally of course, doctors put me on antibiotics (I think its high time somebody out there in the medical world did some research on this condition, more and more people are developing it, yet nobody knows anything about it or how to cure it).
Anyhow, I thought I'd mention a product that I've used on my pustules for draining them. It may help someone out there, I've found it very effective for drawing the contents of them out once they burst. The name of the dressing is Allevyn. It comes in an adhesive and non adhesive variety. It can be awkward at times to cover a boil, depending on where it is (if its a groin one in the crease, I usually find the non adhesive handy, they can be placed over it and undies hold it in place). The adhesive is good if you get them on flat areas, like thighs or tummies. A GP put me onto this product, they use it to dress ulcers on the legs to drain out the infection.
Experimentation is the key, I sometimes use the non adhesive with some sticking plaster to hold it in place. Anyhow, if you tend to suffer when they break open with that awful smelly gunk that comes out of them, these dressings will drain all that awful muck out, which I find makes me feel alot better. These dressings are designed to be left in place for 2 or 3 days though, so you don't have to replace them daily, unless necessary. But I'm definitely going to try this turmeric remedy, it sounds marvellous.
My prayers to you all fellow HS sufferers. Its a rotten disease, a life destroying disease and its about time somebody did some research on HS. We need to know why we have it and what can cure it. In my 35 years of suffering from it, surgery is still the only option and its anything but permanent!!! That's just plain sad...
(Austin, Tx, usa)
I have discovered stress causes my HS. I did have them a lot when I worked in a job I hated. I left and they cleared. However until this week my last attack was 10 years ago after the death of my father. I have had a great deal of stress lately and "hey presto" HS has returned. I'm trying to stay calm but being in pain doesn't help.
Just noted a study that has been reported in Medscape that would be of interest to sufferers of this condition. I don't know how to create a link but if you google "Biologic Therapy for Hidradenitis Suppurativa" by Graeme M. Lipper, MD, it should come straight up.
(The Beach, Canada)
HI, I HAD HIDRADENITIS SUPPURATIVA. I CURED THIS DISEASE BY GOING TO A HOMEOPATHIC DOCTOR AND BEING PRESCRIBED ELAPSE CORRALINEOUS. I HAD BOILS ALL OVER MY BUTTOCK, UNDER MY ARMPITS, CHEST ETC. IN 10 DAYS IT CLEARED UP AND NEVER RETURNED. I HOPE THIS HELPS.
EC: When we searched for Elapse Corralineous on the web just now we could find no mention of it, so we emailed Dianne for more information. We will post her response as soon as we hear back!
(Gaston, Sc Usa)
(Gaston, Sc Usa)
(Newport News, Virginia)
I have had this disease from few years now & never bothered till the bumps & lumps got bigger & spreading with marks on my skin.... I got this disease all around my pubic hair....
I have found a remedy after trying nearly everything I read abt this diesease....
Try this and in a months time not only will you get rid of the marks & scars.... But it is the best remedy for this diesease....
No surgery needed.....
All you need is honey & cinnamon powder....
Yes thats it....
One tablespoon of honey & one half a teaspoon of cinnamon powder.... Mix them & make a paste...... Apply this all over your infected area & cover it with tissue.... Or any cloth leave it for three to four hours.... Do this preferably before you go to sleep.....
The best bit is it smells good & is good for ur skin as well.....
In one months time..... You are free from this chronic disease....
Good luck & be well...
My 16 year old daughter a year ago got on the NEXPLANON birth control. That we think is been the same time she started to get boils. She gets them at last 1 a month. So big and bad that we have to take her to the E.R to have them drained and packed. We just learned of a name for her condition. I replied since I seen you are the one had a concern with birth control. They started on her lower back. 1 on her knee the rest under her arm pit. I have been searching since I finally got a name for this. Anyone heard of Emuaid Cream?