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Old 03-24-2011, 08:25 AM
 
Location: Owasso, OK
1,224 posts, read 3,377,083 times
Reputation: 1113

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Quote:
Originally Posted by teebopop View Post
I have bilateral axial hidradenitis suppurativa. I've had it for 10 years. Nothing works for me and my doctor does not want to continue antibiotics long term (he's afraid I'll build up a tolerance and should the time come when I need antibiotics for something else, I'll be done for).

What works for you?

If you don't want to post publicly (this is not for the squeamish) please PM me.

I don't think I can take this much longer. Surgery has been recommended but the odds of it working are only 50-50. Plus there's a possibility that I could end up with "frozen arm," which means that I'll never be able to lift my arms again as scar tissue will form that will seal the skin so that I have no arm movements.

Any information on things that you've tried that have actually worked is greatly appreciated.
I'm so sorry you have to do through this. It must be miserable. I have nothing of value to say to you, but I am sorry.
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Old 03-30-2011, 03:18 PM
 
1 posts, read 13,984 times
Reputation: 12
Default Hidradenitis Suppurativa

I'VE READ LOTS OF BLOGS ABOUT HS AND HS SURGERY! Sadly i did not know it was such a wide range of people with HS. I have suffered with HS since i was 13 years old and now i 25 i will finally have the surgery on 04/01/11. ITS VERY PAINFUL AND ANNOYING! I have mixed emotions about the surgery from reading all the HS blogs, but knowing i am not the only person suffering is kind of a relief. I read where some say its caused by over weight, i have been loosing weight gradually and still no changes, i did the antibiotics and that didnt work but a couple weeks. This has caused so much pain and sadly i will still have occurences in other places. My self esteem is still on high and some people say they want to kill themselves due to HS, i know its life changing but please remit that, you can still live your life and enjoy life. See your self as a strong individual and keep prayer and hope alive that a cure will be found.

PLEASE ANYONE WHO HAS HAD THE SURGERY PLEASE LET ME KNOW THE OUTCOME, AND HEALING PROCESS.
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Old 04-20-2011, 12:43 PM
 
1 posts, read 13,913 times
Reputation: 10
Hi Bluegreen,
I had this surgery on 4/8/2011 and so far so good!!! Thank God... They said after the surgery I would not see anything different for atleast a week, yesterday was my first day of pain. I noticed that things are healing rapidly and my arm is starting to feel tight. I hope your surgery went well and soon we will both be on our way to a life free from HS. God bless!
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Old 04-24-2011, 08:23 PM
 
2 posts, read 29,290 times
Reputation: 13
Hey, i am soooo sorry that it has come to surgery for you and i am worried about that surgery too. i mean SERIOUSLY one derm. says it is something to never go through another says it's better than accutane. Either way confusing and i am curious about the surgery and if this doesn't work out maybe you should try this, though i really really hope for your sake you don;t need this info but...
[mod] need at least 10 other posts to make specific recommendations [/mod]
[FONT=Arial]Hope this information is of use.[/FONT][/quote]

Again hope this info ain't needed but for anyone who sees this i hope you askt about this option first. REEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEAAAAAAAAAAAAAAAA AAAAAAALLLLLLLLLLLLLLLLLLLLLLLLLLLYYYYYYYYYYYYYYYY Y sorry if it depresses you but this info must be known. sorry for the trouble.

Last edited by SouthernBelleInUtah; 08-13-2011 at 08:30 AM..
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Old 04-24-2011, 08:46 PM
 
2 posts, read 29,290 times
Reputation: 13
Hi ya everyone i am brand new to this forum, but it seems to be a friendly place to discuss this awful disease, that i am sure all of you wish, would just dissappear. You can include me into your ranks because i have been suffering from hidradenitis since i was 10 and it is 6 years later. Like many of you i have tried everything for it but it always fails. I have HS just about everywhere you can get it on the body. It is miserable, I AM MISERABLE. PLEASE can anyone tell me any tricks to getting through my already pathetic High School years with just a little happiness? I Beg you. Any way i also want to know if anyone on here has problems in the summer? It would be nice to know that i am not the only HS victom who is cursed to live in doors during the summer and even going as far as to go nocturnal just to keep from going insane. But don't get me wrong i would NEVER wish this curse uppon anyone, it is true that many other people have it worse than people with HS. But to us it IS the worst thing in the whole world. BTB do you peoples think that they are doing all they can to help us? and has anyone tried Botox injections? because i hear that it is supposed to help out tremendously but the downside is that it has to be semi under control for it to work. anyway sorry for the bother but it is nice to know that there are people out there who know the hell i am going through, i am so happy i could cry because i am not alone but i could also cry out of sadness because i am not the only indvidual suffering. I hope everyone suffering from HS can find a little piece of heaven on Earth to hold onto to stay sane and not clinically depressed.
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Old 06-06-2011, 10:48 PM
 
1 posts, read 15,301 times
Reputation: 15
I was diagnosed with HS in 2006 after years of having the boils lanced. I had it under both arms and it was horrible! I would have 5 or 6 under my arms at one time. All of my shirts had yellow stains on them from them draining. I tried a new doctor and they immediately referred me to a surgeon. I felt great after the surgery....until about a year later, they became consistently under the other arm. I had surgery under that arm in 2007, and didn't really have any other problems until a few months ago. I no longer have them under my arms, but now have one under/in between my breasts. Talk about uncomfortable! I am glad I had the surgery under my arms...at least I can wear sleeveless dresses/tank tops now! I have an appointment with the surgeon tomorrow to discuss the one on my breast.Moderator cut: sorry but you need 10 other posts before you can make specific recommendations Hope this helps someone....

Last edited by SouthernBelleInUtah; 06-07-2011 at 10:38 AM..
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Old 06-07-2011, 09:49 AM
 
1 posts, read 15,663 times
Reputation: 16
Seriously, try the turmeric before you go having any more surgery. It really works...quickly....and there is no scarring or recovery time.
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Old 06-10-2011, 09:39 PM
 
1 posts, read 15,284 times
Reputation: 13
Default thirty five years of H.S.

I have suffered with H.S. for thirty five years, but, through trial and error, I have found great relief. I am not a doctor, so I cannot say if these things will help others. I take 2 or 3 grams of vitamin C every day. It eliminates the odor of the disease, which is otherwise a great misery. If I forget my vitamin C for one or two days, an odor starts, and an abcess begins to swell. I wear only cotton or rayon clothing close to my skin -- blouses and underclothing. This eliminates the need for deodorant. Wearing polyester or other petroleum based synthetics causes an awful odor followed by an outbreak. I do not use anti-bacterial soap on my skin, but I launder all of my clothing in anti-bacterial detergent. The old time herbal remedy, Noxema, cools the burning pain of outbreaks and may hasten healing. Yardley Talc (hard to obtain in stores, but available over the internet) quickly dries up abcesses. It contains calcium carbonate (lime) which may be bad for the lungs, so I use it carefully -- under my robe or with a scarf over my face. I live a pretty normal life now, but, in the past, H.S. -- the odor, the agonizing pain, the feelings of uncleaness __ have disabled me and diminished the quality of my life. I pray for you all. I hope my experience is helpful. I know what you are going through.
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Old 08-13-2011, 06:56 AM
 
1 posts, read 13,597 times
Reputation: 10
BLUEGREEN13, melaniee969..... I wish you both the best luck in the world. I myself have had the same surgery that you are speaking of. It was 13 years ago.. It has come back after 11 years.... only 1 arm but none the less..... THERE IS NO CURE for HS. I have been on so many antibiotics, and other treatments such as Accutane... No such luck on treatment. as of current it covers all of my pubic region, along with my back, waist, under both arms again, and the nape of my neck. diagnosed at 16 now dealing with it for 16 years......

Last edited by kjbord; 08-13-2011 at 06:58 AM.. Reason: adding info
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Old 08-19-2011, 08:20 AM
 
1 posts, read 15,094 times
Reputation: 11
Default My pain

I suppose I should count myself blessed that so many people out there have to deal with this horrible pain so they can help me figure out what to do about it. But at the same time I wouldn't wish this on my worst enemy.. Hitler maybe... (sorry I joke to hide the pain.. even online). Right now it is the worst it has ever been. One under each arm. The one under my left arm is about the size of a bouncy ball and it hurts to type right now since my computer is above shoulder level. I couldn't even sleep with a shirt on last night due to the pain. I try to wear baggy shirts but when you are tossing and turning it can still get tight under your arms. I have decided that I'm going to try Hibiclens, Zinc, and Turmeric. I found this forum by looking for tea tree oil as help but these sound much better. Maybe the Hibiclens can even help with my toenails.. I will update in about a week since I will be starting these today. I don't want to do surgery and I will try everything under the sun to keep myself away from there. Tho I am thinking about seeing if I can get a study going for it and maybe find a real cure. I just needed to post my pain to others who truly understand.
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