Conditions
Hidradenitis Suppurativa
With a name like Hidradenitis suppurativa, it’s perhaps not immediately obvious what kind of condition we’re going to tell you about. However, if you take a moment to look up “suppuration” in the dictionary, you’ll discover that it means “the formation or discharge of pus”, which should start to give you an idea. Hidradenitis is a chronic and stubborn skin disease centred on inflammation of the large specialised sweat glands (apocrine glands) that are found mainly in the armpits and groin area. These areas show a distinctive mixture of boil-like lumps, areas leaking pus, and scarring, which can be itchy, but usually painful, and the lumps hurt if they are pressed. Aside from the pain and unpleasantness of the condition, it can also be embarrassing and unsightly. There are possibly over 100,000 sufferers in the UK alone with this condition, which can be difficult to treat, although there are a number of treatments that can be tried including medications and surgery.
Comments and Questions
You can share your experiences and thoughts with other Embarrassing Bodies site-users below. Comments & Questions are reviewed by moderators, but if you see anything on the site that worries you, please report it and one of our moderators will look at it as soon as possible.
Please note: Unfortunately Channel 4 cannot respond to individual inquiries. If you have any concerns, you can check out NHS Choices, but ultimately it is always best to check with a health professional.
Does anybody know if HS is covered by the DDA?? I am having problems at work due to my surgery.
Hi Emma, I had it severeley in my armpits and the surgery I had was pretty bad, I think in total it took 12 months for the wounds to heal. It wasnt too bad in my breasts, I would definately speak to your doctor again and definately try hibiscrub....anything is worth a try!! What have you tried for the scarring??
Hi, I am 29 and have suffered since i was 15, I have had surgery on both armpits - which thankfully has been successfull, surgery on both breasts and now have it in my groin. I also use hibiscrub and find it definately calms it down.
Hey, I was just wondering how severe it was for you to receive surgery? It's just that I'd love to have surgery on my groin, to reduce scar appearance through laser or something but when my doctor referred me to the dermatologist, the dermatologist was not helpful. My scars used to be really really bad, they are still visible but over the years I've tried all sorts of random things from scrubs to oils which have minimised their appearance. The scars are still there, they still look quite bad but not as bad as before. I'm wondering if I should ask doctor to refer me again. I might get a nice dermatologist this time. I'll try the hibiscrub as well.
I think i may have HS but every time i go to the doctors he blames it on me being over weight im 21 and have self diagnosed myself at the age of 15, it HS caused because you are over weight i just dont know. Can anyone help
Hey people, I have found these groups: http://www.hs-support.uni.cc/ http://www.facebook.com/hssupport They both seem to have some good stuff. There are loads of suggestions in the forum of the first website I have given.
hi my name is leah and im 16 i have being suffering from HS or 7 years.i get the lumps im my armpitts, grion and on my belly. lately they have started to come up alot more the pain gets so bad that i cant even walk. i missed months at school due to hs and for the last 14 months i have being talking antibiotics have surgary 6 times to help but nothing seem to work at all i just wondered if anyone have some ideas for me to try anything please i start college in two weeks and i want to be able to move around without pain. i just want to be a normal teenager:) thanks
What Antibiotics have you been taking? I took Erythromycin around June but that did not work. I went back to the GP last week and she put me on Clarithromycin. I think that might work because I had some outbreaks and flare ups on my groin which seem to have gone down and sort of dried out since I started the antibiotics. I was only a one week course, I'm left with two more days on the medication. I also asked for Dianette, the contraceptive pill, Vikki much earlier recommended it as something that worked very well. My doctor was apprehensive but I once had Dianette when I was at university and I think it did work. My doctor prescribed it as well, so we'll see. Hope this helps.
I have suffered with HS for about 12 years now. As for many, my diagnosis came quite late - approx 3 years ago. I am probably a stage 1 - stage 2 sufferer so a lot better off than some for which I am truly thankful. My HS has calmed down SIGNIFICANTLY over the past 2 years due to two things: 1. I stopped eating meat. I did not stop because of the HS but I have noticed that since I no longer consume flesh, my HS has calmed down a lot. 2. For the past year or so I have been using HIBISCRUB (available at Boots). This is an antimicrobial handwash usually used by sugeons for pre-op washing. I use every day religiously (twice if it's very hot) on affected areas. I ran out whilst on holiday and did not use any for about a week and noticed a REAL difference. Obviously not a cure but over time, this really seems to help keep things calm. Best wishes to all fellow sufferers
I was diagnosed with Hidradenitis Suppurativa Disease today. I've been getting Boils/lumps for about 10/11 years now (im only 18)!! I have tried all sorts of different meds from "The Pill" to random thing's i've never even heard of! In pure desperation i researched Hs and you can have surgery to remove the infected tissue, and skin graft. 50/50 chance they may or may not come back. Speak to your Dermatologist about surgery, and see what they say. i've also read that sergury is the most effective option. If anyone could give me anymore info i'd be gratefull! Good Luck Guys
I'm a 21 year old female and was told I have HS I have suffered with it for the past 6 years and I have had the operation that you are talking about unfortunately it did not help me and I still suffer everyday with it I would never say don't have the operation but I would Say don't put all your hopes that it will cure you. But good luck and I hope it works for you.
Oh my goodness, I am sorry to hear it hasn't worked for you :(!! What was the op like? I've heard all sorts of things. Have you had nurve damage from the operation? How do you cope with the scars? As i am not coping well with them :( Do you know if there is any organisations for people who suffer from this disease? I feel so low and in constant pain.
Hi, I'm a 26 year old female and I suffer from this horrible disease too, I have had it since I was 13 :(. I get it on the groin and now have permanent scars. The dermatologist I got referred to said they was nothing they could do about the scars :(. It's so horrible. I was wondering how people have dealt with it psychologically? How have you dealt with having new partners? I have only had one physical relationship, I avoid intimacy because I worry that men will think I have a STI/D of some sort :(.
Hey I have HS and have done for nearly a year... my doctor changed my contraceptive pill to Dianette to help stop the lumps from coming up. It has worked very well, I still get the lumps maybe once every 4 months, but they are no where near as big or painfull and just seem to go away on their own.. If they are causing me a problem, I tell my doctor, they give me two weeks worth of antibiotics and it clears in a week.. I have spent a lot of time researching this disease and not once have I seen that the pill may help (helps by controlling the hormone that can sometimes trigger the problem) I hope this can be of some help to you and everyone else with this problem.. It is never going to go away so finding little bits of information is extreamly helpful, at least I think so!
Thanks Vikki, I once used Dianette and upon reflection, I think it may have actually helped as some very large scars faded. Is it possible for it to fade scars? I'd really like to discover what faded my old scars, I tried so many things at that time. I used a home micro-dermabrasion kit, rosa moschetta oil, palmers serum and dianette. The scars I had at that time seemed to fade. I have subsequently bought rosa moschetta and palmers serum. They didn't work on the new scars, so process of elimination tells me it might have been Dianette or the micro dermabrasion kit. I think I'll try dianette first although I'm worried about the bad press it receives. I have been getting really bad outbreaks lately so hopefully it will help a lot.
Hi , my name is Lucia im 37 and had never heard of HS until just now. I think i may have it but dont know , and my doctor seems a bit clueless too. from the age of 13 to 30 i went to hospital at least once a year, every year without fail to have abcesses drained and removed from the bottom of my spine (pilonidal abcess). now i get them all over except there, under my arms on my belly and at the top of my legs . they are big boils , some like volcanos some small that never burst but never really go just leave a purple blob. i have one today that was very painful and has errupted . After reading about HS alot of it seems very familiar like i noticed they seem to get worse just before monthly cycle , when stressed ,the depression , extreme pain all seems familiar .I Have been looking at some of the cases on here with HS and mine doesnt seem as severe as them so a bit unsure if it is that .
Thank you for visiting our web site and for discussing your problem so openly. If you would like the opportunity to be seen by one of the Embarrassing Bodies Doctors and have your problems assessed and treated by a specialist, then why not apply for the chance to take part in the programme. Please visit the following link and click ‘Apply to be on the show’ where you can fill in an application form: http://www.channel4embarrassingillnesses.com/features/be-on-embarrassing-bodies/
i have had this condition for many years, not sure how long though, i finally went to my doctors, who informed me straight away what this condition was, though they referred me to hospital for treatment, since then i have been on soo many different meds and have had surgery, your symtons are so like mine especially the monthly thing, i always know now when my period is coming, horrible time not only for me but for others as my mood gets bad during this time. 1. i would definately change doctors and also go to a different hospital, they dont seem to have any clues about what is happening. good luck
Important Notice
The information provided on this website (including any NHS Choices medical information) is for use as information or for educational purposes only and is not a substitute for professional medical care by a qualified doctor or other qualified healthcare professional. We do not warrant that any information included within this site will meet your health or medical requirements. This Embarrassing Bodies site does not provide any medical or diagnostic services so you should always check with a health professional if you have any concerns about your health.
If you want to embed our videos in your site, read our embedding T&Cs here
The EB doctors have been looking at your comments and have answered some of the common questions below. Remember that it is always best to check with a health professional if you have any concerns about your health.