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Old 10-12-2003, 03:22 PM   #1
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Exclamation Hydrodenitis Supertiva

Does Ne 1 Else Have This???????
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Old 10-14-2003, 10:58 PM   #2
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zuzu8 HB Userzuzu8 HB Userzuzu8 HB Userzuzu8 HB Userzuzu8 HB Userzuzu8 HB User
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Dance-
I don't have this ( spelling is "hydradentis suppurativa") but do you need information on it or just need to share with someone who has it?

If you need info, I can probably research some for you.

zuzu xxx

 
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Old 10-16-2003, 12:55 AM   #3
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my sister has it. i know others who have it. it is actually not uncommon and stems from the apocrine gland. I would imagine you have cyst like under your arms/groin area as this is how it manifests and it can be extremely painful.

please let us know if you need information.
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Old 12-10-2006, 11:19 PM   #4
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Re: Hydrodenitis Supertiva

I unfortunately have this rare disorder called hydrodenitis. I have been suffering with this problem for over 15 years. I have a constant outbreak 2-3 times a month. I have been cut on so much (for the draining), that the numbing medicine they inject you with dont work anymore. I have taken every antibiotic, nothing seems to work. I am at the point to where when I do get a flare up, I'd rather suffer at home with the pain, doing everything possible to make it burst on its own, rather than going to the emergency room. I am glad to hear about someone else having this problem, I thought it was just me. I've always wondered why was I being punished with this awful problem. Only a person who goes thru this, knows how painful and uncomfortable it can get. I hurt so bad, to where I cant get out of the bed, I be barely moving. So if you have any helpful info you would like to share, I would greatly appreciate it.

 
Old 12-17-2006, 02:24 PM   #5
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Re: Hydrodenitis Supertiva

I have it as well. I am lucky to have a mild form. *knock on wood* I have outbreaks maybe once a year and then I only get one or two boils at a time.

 
Old 02-21-2007, 07:29 PM   #6
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Question Re: Hydrodenitis Supertiva

Hi my name is Scott and my poor wife Lauren is suffering from Hydrodentits, its at the point, where she has them all the time. And it is always around her pantyline so of course it's so painful. I had to carry her out of a mall one time cause she couldn't even walk. This is been going on for over 5 years now, and my heart goes out to her, and anyone else who suffers this disease or infection or whatever it is? All I know they get so big, and purple in discoloration, just one after the other. She will squeeze them, and a little puss comes out, and then blood. I don't want to be to graphic, I just don't know what to do for my sweet heart? A doctor said I will give you antibiotics, but you will have to take them for the rest of your life. She is already on blood pressure medication, and she doesn't want to take antibiotics for the rest of her life. Besides they give her yeast infections. I am at a loss. She is at the point where she is tired almost everyday. I don't know if this is from the hydrodenitis or what? She gave many blood samples for different things, cause she just don't feel good. And the one thing that came back is that her white count was a little high. I don't know maybe that could be cause the white cells fights infection, and possibly its constantly fighting the hydrodenitis ? I just don't know, I am so worried, does anyone have any other knowledge about this? I have been looking through the web and books and so forth. Multiple doctors, and some say it's something else as ingrown hair folicles and had one removed, and they always come back. There isn't a day where she doesn't have a bump or two down there???? Please any input please help. Thanks for listening,
Scott, writing on behalf of my wife Lauren.

 
Old 08-06-2007, 08:10 PM   #7
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Re: Hydrodenitis Supertiva

I have been suffering from Hidreanitis for about 10 years now. It always seems to be worse for me when I am dealing with a stressful situation. I have had major surgery on the one....but it came back about a year later, and I have a few others drained. It is a disease that little is known about but it is not a fun disease to live with. I had a really bad outbreak when I was pregnant last year...not fun since there wasn't really anything that could do for me. If anyone has any ideas on how to deal with this let me know. I have tried so many things.

Shell

 
Old 09-02-2007, 06:26 PM   #8
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Re: Hydrodenitis Supertiva

Hello Scott,fellow-HS survivors!

I have had HS for about 7 years and I think I may have some things to try that have given me some relief. I have gone into a remission, and I am thinking that perhaps I must be doing something right. I only had one outbreak at the end of July, but it was quite a doozy...I am sure it was from stress and the hot temperatures.

What I have done is to stay away from ALL processed food (no sulphites, smoked meats, deli etc), NO pork, I drink plenty of pure spring water (2-3 Litres minimum per day), no soda's. You also need to reduce your red meat intake and eat plenty of fruit and vegitables(especially lots of stuff that is orange, yellow, and green). Basically what you are doing is cleansing your system of toxins. No margaine, only olive oil. Take a good multivitamin, and eat mostly fish and chicken.

Stress is a huge part of this disease, so if you are stressed out, find YOUR way of coping that works for you...I quit a nightmare of a job and took up meditation and long walks...and lastly, try to keep your body cool and avoid being over heated. Wash all your laundry in phosphate-free,sensitive soap, and avoid personal soaps that are perfumed...I use sensitive baby soap in a pump in my shower and a fresh washcloth everyday. I also heard that using epsom salts as a gentle body scub,and/ or dissolving it in your tub water is great for relieving pain and detoxifying. I have even made a warm compress using epsom salts when I get the odd one...it seems to draw out the infection...

Give it a shot, pass the info on to your wife....I am antibiotic free...and I am hoping that maybe my management of this horrible disease will be long-term with the time inbetween breakouts getting farther and farther apart...
GOOD LUCK!

Last edited by Louise61; 09-02-2007 at 06:34 PM. Reason: make better sense

 
Old 05-25-2008, 10:32 AM   #9
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Re: Hydrodenitis Supertiva

I have had Hidradenitis Suppurativa for 21 years — my first symptoms began with a vengeance when I was 9. My pediatrician told me I wasn't allowed to play at recess anymore, that I had to just sit still and move as little as possible. At the time, the diagnosis was a staph infection, and my symptoms included open lesions that would bleed/drain and stick to my clothing. The doctor suggested Vaseline, which at least prevented me from ripping open the wounds every time I had to use the bathroom, but it did little good for the root problem. I used pads and Band-Aids with Neosporin to prevent the boils from leaking through my clothes (though they often did anyway), but I'd end up with more sores from the adhesive.

Throughout my teens, I saw a dermatologist who continued to think the problem was a staph infection. Eventually, he rediagnosed the problem as HS, but the treatment was basically the same. I took tons of antibiotics and tried every topical solution and wash available, as well as cortisone shots for some flare-ups that remained under the skin with no way of draining. I could never be certain whether flare-ups were responding to the drugs or just running their course on their own; they never fully went away, and there was always a new one on its way. We discussed surgery, but it was impossible to pinpoint one or two areas that were most susceptible to outbreaks; the problem was far too widespread.

Doctors always say you should only wear loose-fitting clothing, but that never solves the simple problem of sitting. Clothing bunches and restricts when you sit, no matter what you wear. Plus, the pressure alone from sitting causes problems (not to mention that actually sitting on a flare-up sends shooting pains through your body). So, unless you spend your life standing up (naked, nonetheless), there will always be some issues.

And, of course, the "no playing at recess" mandate was also poor advice. People who are overweight tend to be even more susceptible to outbreaks. I was never overweight, but from my personal experience I've noticed that regular exercise and drinking plenty of water help, regardless of weight, probably by ridding your body of stress and toxins.

I have seen many, many doctors for the problem. I was told it would go away by age 25. Not true, but it has gotten better, and I no longer take antibiotics for it. I was glad to read the posting about avoiding processed foods because I think this has worked for me, too. Sugar is also a culprit to avoid.

Finally, I highly recommend washing the area (as both a treatment for flare-ups and as a preventive measure) every day with Hibiclens. You can buy an 8-ounce bottle of this pink antibacterial soap for $10 at Walgreens, which is much cheaper than all the prescription washes and topical ointments I've tried. A little bit goes a long way, and it may be possible to switch to every other day if your symptoms allow.

I hope this helps. Anyone suffering from the disease should just know that it's more common than you might think, and it's nothing to be embarrassed about or ashamed of. It took me a long time to realize that.

Last edited by sarah787; 05-25-2008 at 11:28 AM.

 
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