Hidradenitis Suppurativa Support Group

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in drainage, often leaving open wounds that will not heal.

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confirming diagnosis

Hello all - first of all - thanks to everyone who has posted on here as it's been a big relief to read first hand experience of this bugger of a condition. I've been seeing doctors for 3 years now and after long periods of antibiotics and topical creams (tetracyclene and steroid creams) have just been referred to a dermatologist with suspected HS. I'm already feeling lucky at this point not to have such extreme outbreaks as some that are mentioned on here - my sympathy to those who struggle daily with this thing. I guess mine must be fairly mild, but involves the armpits, under the breasts and in my groin. I was particularly concerned when I got a pustule on my inner labia which is why I INSISTED on getting a better examination, as it was so sore. I haven't had sexual relations for 3 years now because of embarrassment, and, while one can overlook small bumps and scars, the smell that these can cause is too humiliating! I will let everyone know what the dermatologist says - if he has any bright ideas that haven't already been mentioned. On a plus note - I've found that tea-tree oil is effective for me in the healing of 'boils' and the scarring effects. Love to you all (and sorry for banging on..!)

Replies

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I will try the tea tree oil.Thanks, I will stay tunned for any other info.
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Hope it works for you katby!
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Hi there shazzab im a hs suffer and im due to go in for more surgery i do hope to chat you soon lots of hugs sandy
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hi sandy here again when u go to the dermatologist ask about bo tox injections into the glands if u have a mild case of HS that could be a way of controlin it i was told this when i went to see dermatologist but mine where too bad for that treatment
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Thanks for your post! I know all to well about the SMELL! EEEKK!!
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Thanks guys!
I'll ask about the Botox injections cozmic, but I'm not sure I want to go that drastic just yet. (Give it a few months and I'll no doubt change my mind!) Am definitely gonna try to give up smoking and lose some weight (gulp!) x
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Look at the website www.hs-usa.org and it will give you tons more information plus there are many support groups there..My husband suffers with hHS
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Hey shazzy,
I've had this for 22yrs and mine is way outta control. I have dieted lost 140lbs, quit smoking for 2 yrs and none of those helped. This disease is a creepy thing. I hope however as a mild case, these work for you, see, what I have learned is what works fer me may work for kittyban but not you or cosmic. I have eaten every drug under the sun been a guinea pig for new drugs had surgury and they came back. I eat levaquin and oxycodone when I sleep. The mixture makes the sore absess faster for some reason with me and I have no idea why. But I hear ya on the abstinence thing. It sucks!! LOL but I want you to know yer not alone. Let me know how things go. All of us HS sufferers should meet somewhere and have a party where we can all just relax and not be so concerned. Because if yer like me it doesn't let you forget does it you think about these every F'N day. Wouldn't it be nice to be somewhere that it didn't matter just fer one day?
deleted_user
deleted_user

Tea Tree Oil is a natual antibiotic - perhaps thats the wrong way to say it - but never the less it is a natural way to kill bacteria. Many people have had some good success with it - personally I have not - but as you will come to find what works for one person may not work for another. That's one of the greatest things about support groups because it is hard to figure out what works for oneself.

Keep us informed of what works for you. You sound like you have HS like I do - its considered Stage II (only 1 more stage to go). With the help of my doctor we have kept my HS under pretty good control - but it took me nearly 7 years to get where I am (I've had HS for about 17 years... since I was 13... I'm now 30). Sometimes you'll feel like no one could love you -- but trust me; there are good people out there who can understand what you're going through even though they do not suffer from HS - and if they love you; they'd never force you to be intimate if you were in the midst of a flare. My partner has seen me in the best of times and the worst of times - he's been my rock for 8 years. Without having him by my side through the good, the bad, and yes the ugly too - I have no idea what kind of person I would be today... Don't give up on love - when you find it - love won't give up on you! Stay strong Shazzab - don't throw in the towel - that will only lead to depression which is one heck of a monster to battle!
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