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 i have heard that the contraceptive dianette which is also used for acne can help with HS. I read today that contraception that stops you from menstruating altogether is also effective. i too seem to have a flare up just before my period. also there is a link between HS and prolonged bleeding during menstruation which i find true in my case too. i wonder if this is how it is for others. good luck
I am 35 yr old female & have suffered from HS for the past 15 years. I can honestly say taking the pill consecutively as I have for the past 4 years, does not help my HS. It seems we are all a little different when it comes to healing methods. So far I have yet to find a cure & I feel like I have tried everything!! Urrggg!! So frustrating.
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.
To Talija: I know exactly how you feel. Mine first started when I was 25, and was newly married (now divorced from this man, which has nothing to do with the HS). I am now 39 and still have major problems. When I was dating again in my early 30's, the idea of having a serious relationship, moreover, a meaningful sexual relationship was horrifying, because by that time, my inner thighs/groin area were horribly scarred, with pits and tunnels... I have been so fortunate that my new husband is very understanding and recognizes that this is a medical condition with poor prognosis (from a medical perspective, at least). He has gone to great lengths to help me remember that I am desirable, attractive, important, etc. regardless of this disfiguring condition near my most "intimate" parts. I have spent many nights crying and asking him why he is attracted to me since I am "broken." He giggles, then reassures me. His attitude is "well, it's not your fault, and you have little control over it, so we deal with it and go on," DESPITE the fact that this can seriously affect our sex life during flare-ups. Aside from this issue, I am a very confident person, which coupled with his support, allows me to remain feeling like a desirable, attractive, and non-disfigured woman. I hope this helps.
i have had this awful thing for a long time and never knew what it was until now. my doctor is useless and so is my husband. instead of supporting me he thinks it is kind of funny. i have to basically diagnose myself. i wish all of you luck and love. and i pray there is a way to stop this dreaded illness. blessed be.
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.
Ginger or Aloe Poultice
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!
Ginger, Garlic, Mint, Pomegranate
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...
Hia saw your post and thought I'd try the dressings you mentioned. I use chlorhexidine wash before I enter the shower/bath which helps keep some of them under control.
i did my own food tests for the past 4 years and i notice that i only have outbreaks when i eat any corn, corn starch, corn meal, maltodextrin
(Austin, Tx, usa)
Hi, wonderful to find this site, I'm 35 and have had HS since age 12, which progressively has gotten worse. I've never gone into remission, but have had times when my HS seems less uncomfortable, and other times when the breakouts are crazy and painful. I haven't tried any one thing consistently, except for using Hibiclens, I can't say I see much improvement using it, but I have to believe that using an antibacterial soap has to be better than not. I've never gone on a gluten free diet, so I am considering that, as well as I've been heavily considering a raw food diet. I have been overweight my entire life. My weight is currently my highest as well as my HS currently it's worse. I've read a lot in the past few days about HS and recommendations on foods to stay away from, and I must say it seems overwhelming.
I mainly just wanted to say thanks to everyone for sharing information, it does help to know I am not the only one who suffers from HS.
Legendfalls, I have had HS for about 3 years now and live in Austin as well. I'm considering seeing a naturopath here, have you looked at that at all? I have recently tried to avoid dairy, and it does seem to help quite a bit. I'm going to try the turmeric and a couple other things listed on this site. Email me if you'd like, I'd love to have someone close by that knows what I'm going through. -jnbol82(at)gmail.com
Hello Everyone, Seems there is a big club of "us". I have found it starts with food and to go further I read lots of info on a castor oil pack detox...especially to do with Edgar Cayce. It starts with our gut and the foods we put in. Doing a detox pack tomorrow..hopefully getting my gut detox and putting only Paleo friendly...watch nightshades..in my tummy. Drinking teas and only cut refined sugar and only using raw honey which seems to be doing something productive. Just started all of this 100% cause I love sugar and I smoke...a nighshade. Still learning and wish you all well...God bless us all. Amen!
Hidradenitis Suppurativa and Stress
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.
Hidradenitis Suppurativa Studies
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)
this link only took me to a log in page for a user account.
EC: Sorry, you are right. Oddly, the link only works if you click on it from Google search results!
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!
Check this link for an explanation of the Elapse remedy. http://www.homeoint.org/books/boericmm/e/elaps.htm Sorry I do not know where you can find it, except that I purchase unusual remedies from my naturopath's clinic. A homeopath's and or naturopath's office should have it or be able to order it for you. Good luck!
I originally wrote: 06/05/2008: Rebecca from woodbridge, VA replies: "IN REFERENCE TO Hidradenitis Suppurativa Remedies HAVE YOU FOUND OUT THE RESOURCE FOR (Elapse Corralineous) YET? Thanks so much!"
I am sorry it took awhile to follow up, have you found out any further information as of yet? Thanks so much!
The reason (I think) that no one could find Elapse Corralineous is because it is spelled incorrectly. I believe it's Elaps Corallinus, which can be bought online at hmedicine.com. A direct link is: http://www.hmedicine.com/homeopathic/dilutions/D-E/Elaps_Corallinus
I haven't tried this yet (I'm still just new to the turmeric and the ACV/Epsom salt treatments) but I'm going to order some of this stuff off hmedicine and see how it works. I think 200cc a day is what it should take, but you might want to ask a homeopathic doctor to make sure.
Hope this helps!
EC: At long last! Thank you so much!
(Gaston, Sc Usa)
(Gaston, Sc Usa)
Ok I was in process of ordering the elaps Corallinus and I decided to stop a minute and do a bit of research. The side effects are CRAZY! They sound as bad as having these boils, maybe even worse! I advise people to really check it out. Unless I am reading totally wrong on all these sites, its made from a deadly coral snake from Brazil! You can experience Hallucinations, black discharge from the ears and body, and so much more! When I read about it on one site it gave me a great paragraph on how wonderful the product is, then 6 paragraphs on all the bad side effects. Some of these are really bad! Shouldnt we be scared of this stuff???
Homeopathy doesn't use tinctures or remedies full strength unless they cause no bad symptoms.
Chamomile is one remedy that can be used as a tincture as well as diluted. Most remedies are diluted to the point where none of the original substance is in the dilution anymore. Something as powerful as "coral-snake" would be taken in an extremely diluted formulation.
Homeopathy works on the principle that an infinitesimal amount of a substance will cure symptoms that the tincture would cause.
See the Second Principle of Homeopathy
(Newport News, Virginia)
Hi, coralineous refers to coral dwelling species.
Honey and Cinnamon Poultice
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...
I noticed you wrote here years ago. Are you still in remission? Of everything I have read I am most intrigued by the cinnamon and honey treatment. I just started it. I am grateful to have found your post and would love to hear an update if you get this!
HS Causes and Triggers
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?
The cream you mention is rather expensive. Have you considered turmeric for the boils? It is a very popular remedy on Earth Clinic for boils.
Did you get your daughter off birth control? If she is taking it to regulate her cycle, there are many good remedies for it.
Hi there. I suffer from the same thing. I would suggest that you try Colloidal Silver on those boils. I use a Silver Gel on mine. I used to get them regularly , but I noticed something strange lately; the boils are getting smaller and smaller. So small, in fact, that the last boil was the size of 1/2 a pea! And after that paltry pathetic attempt at a boil, I haven't had one in months! Please give it a try. If you can't fine the gel, soak a cotton pad In Colloidal silver and then put a bandage over it. It won't take very long before your daughter finds blessed relief. Take care.