Hidradenitis ??

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I went to my dr. re. two small lumps that are in the crease under my bottom - one is pea size and one is a little larger. I am thin, so it's not due to skin rubbing or anything. They are not discolored (pink or reddish) - they are just cyst-like lumps under my skin. They are not painful but they get irritable once in a while only because I sit on them. The larger one started out pea-size like the other. My doctor referred me to a surgeon to have him remove them. I have never met this surgeon before but he's telling me that it's a mild case of hidradenitis. From what I'm reading, I really don't think so. Again, they don't hurt - they're not pink or any other color - they aren't open sores or lesions, nor do they drain anything. They're hard little nodules. Can anyone tell me if they think this doctor is misdiagnosing me on this??

I do not want him to cut them out, along with all the skin above them, and let them HEAL OPEN (which is what he is suggesting) if he's WRONG! ??
well..i have hidradenitis...and from my own personal experience...i would tell you to not have surgery. my actual doctor did not want me to have surgery but since I had been suffering since early puberty (20 now) i just went ahead. It solved nothing. After a few months they came right back. But the thing is about your question...i'm no doctor but in my case I had boils as well as cysts, my boils would eventually go down or come to a head...and the cysts would disappear after a while. They never tried to remove them other than lancing my boils, and my surgery was focused on removing the skin and layers under the skin and yes he made them heal open i had 5 or 6 deep open wounds that took about 8 weeks to heal fully.
in regards to your question,
i dont know if it was a misdiagnoses but from my own personal experience I would advise against the surgery .... hth =]  (+ info)

hidradenitis?

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I have been suffering with this problem under both of my arms for years.No meds work and i am sick of getting them lanced. And i don't want them to do a skin graft b/c it could come back in areas around it.I heard about a surgery that removes the sweat glands from under the arm does anyone know what this is called or what the surgeon is called that performs this? Also i am in the N.C area if anyone knows of a surgeon that does this that would be gladly appreciated! Thanks
Hi,

I've attached a link to some of the most recent work in the field. I've had HS for 11 years now, so I really know what you're going through.

There's a yahoo group for people with HS - If you join that then you're more likely to get a response from people in your area (sorry I'm based in England, so my surgeon recommendation wouldn't be that useful!!!)

From what I'm aware the surgery that removes the sweat glands is the one that will require a skin graft, but I could be mistaken - check the link and join the group, they've got loads of up to date relevant info for you to check out.

Hope your condition improves,
XxX  (+ info)

What is the best deodorant to use for Hidradenitis under the arms?

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I have gone to the doctor for Hidradenitis(infected boils under my arms) and deodorants seem to be making the symptoms worse or bringing them on all together. I've tried Dove(spray) and Secret(unscented gel). Should I go with Toms of Main, Crystal Deodorant, a homemade mix of oils? Anyone know?
I used the rock or crystal deodorant. Deodorant doesn't cause the problem, but it can worsen the symptoms if you are having an outbreak. I have my concerns about antiperspirants though because they keep you from sweating and as you know, HS is a disorder resulting from blockage or malfunction of the sweat glands.


Also, try to always bath with an antibacterial body wash. This will help prevent you getting a secondary infection like staph.

If the crystal doesn't work, try just using talcum powder (baby powder, Gold Bond). It absorbs moisture and my dermatologist swears by it for Hidradenitis.  (+ info)

Is there a way to heal scarring from hidradenitis suppurativa?

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I've had in my hidradenitis suppurativa in my vaginal/buttocks for 5 years now which has caused severe darkening and scars also the worst part and what i need help with most that my labia are wrinkled- looking from this disease. Is there a way to improve my condition?
I would love to tell you, "yes", but unfortunately i can't. There really is no good way to help out with the scarring. The main thing with HS is to suppress any further disease. If it's still active, you might ask your doctor about the possibility of using either Remicaide or Enbrel for it.  (+ info)

Anyone familiar with hidradenitis? I suffer from it and I need a cure. Any suggestions?

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I have hidradenitis. I've seen several doctors ranging from dermatologist to plastic surgeons. All they do is give me antibiotics. Does anyone have any home remedies or things they have tried that has worked?
Treatment usually consists of hot compresses placed on the area and antibiotics. A small incision may also be done to drain the pus. Severe cases require surgical removal and in some cases, the skin surrounding the area. These are the only methods that work.  (+ info)

Is there any over the counter antibiotics i can use for Hidradenitis suppurativa ?

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Ive been having Hidradenitis suppurativa for a while, and wanting to know. Is there any anitbiotics i can get a any pharmacy store to control breakouts ?
Hi there

Am afraid not. I unfortunately have the same horrible condition. You can only get antibiotics through your doctor. Its sounds as though you havent had this condition confirmed by the doc? They will refer you to a dermatoligist as its a skin condition which has no cure only managed to stop the break outs.  (+ info)

How many people can find out what hidradenitis suppurativa is that has never heard of it and give sources?

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Little to no research is being done on this disease because the public is not aware of it ( and that includes many doctors). Thousands of people have this disease and suffer with great pain every day and nothing is being done to get us help. I have I had this disease for 27 years. Please do the research and find out about it and then tell others about it. Speak out for us, because we have spoken for ourselves and nobody seems to care. Thanks.
Amen tcm. If you need a place to talk, Yahoo has some great support groups for those who suffer from HS and family and friends of those who suffer from HS.

Hang in there!  (+ info)

Is there something I can use for odor due to Hidradenitis Suppurativa?

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I have suffered from HS for a while now. I have outbreaks under both of my arms. Even though I put deodorant on it still seems to give off a foul odor. Is there anything I can use that will tone down the smell?
I have HS too! I have stopped using "regular deodorant" altogether now for about a year. I found that it did nothing more than aggravate my HS. I have found that using the crystal deodorant works really well (it can be found at CVS).

The odor issue-- try using an antibacterial soap like Dial or Safeguard. It should help some but I also carry antibacterial wipes with me at all times (just in case). I have also been advised that tea tree oil works also but it has a smell (If you try it use it at night). Tea tree is a natural antiseptic.

I hope this helps. For more tips would suggest you join a support group. There are several on Yahoo Groups and everyone that I have encountered has been wonderful!  (+ info)

Is there anything that can be done to stop the spreading of hidradenitis suppurativa?

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I think I may have this condition. For the last few months I have been getting pimple like bumps and a few boils on the underside of my breast and the pubic area. The last few days I noticed I have some under my armpits. Nothing seems to help. Is there anyway I can treat them (I know there is no cure) and possibly stop them from getting worse?
First of all, no, there are no antibiotics that help HS. If it is truly HS, a culture can be done to determine if it is or not. If it is, the culture will come back sterile, meaning, no staph or strep or anything, so, no bacteria to kill with an antibiotic. there is no cause, and there is no cure. Keep it clean, eat right, and try to stay stress free as much as possible. Also, hormones will effect it, even sexual activities can trigger them, because sex effects your hormones. birth control, the only one that will help is Yasmin (i think it's called yaz now...) but it did really help me, and is the only thing that my doctor could find after searching for months.

Good luck, this site may help, and if you need to talk, please email me. http://www.hidralibrary.com/index.html


EDIT:


http://www.petitiononline.com/acure4hs/petition.html this is the site for the petition, and the homepage is http://www.hs-usa.org


this is taken from part of the petition.


There is very little known about the disease Hidradenitis Suppurativa (HS). The purpose of this petition is to raise awareness, educate and solicit research and the funds needed for research, with the ultimate goal of finding the cause and cure for HS.

Welcome
The written text is long but so very important. Please read all the way through. The comments in the signature section also makes for interesting reading.

Target:
This petition is written for anyone who is interested and willing to help our Hidradenitis cause, with the hope of developing resources and attracting the attention of but not limited to the following:
> The general medical profession
> Medical and research Universities
> Research facilities
> Pharmaceutical companies
> Media:
* Television
* Radio
* Newspaper
* Magazines
* Media Personalities
> All areas of Government:
* Politicians
* applicable Departments
* applicable Agencies
> Businesses and companies (donations through HS-USA; address below)

Purpose:
There is very little known about the disease Hidradenitis Suppurativa (HS). The purpose of this petition is to raise awareness, educate and solicit research and the funds needed for research, with the ultimate goal of finding the cause and cure for HS.

At this time, there is no known cause or cure for Hidradenitis Suppurativa. There are many theories, none proven, including:
> Genes
> Hormones
> Androgens
> Stress
> Toxins
> Autoimmune disease links
> and many other theories, but none proven at this time

The best definition for HS at this time:
HS is also known as 'Acne Inversa.' HS is a non-contagious, recurrent skin disease usually found in inverse areas of the body, or those places where there is skin-to-skin contact (armpits, groin, breasts, buttocks, etc.) and around hair follicles where apocrine sweat glands are located. HS is characterized by a progression from boil-like, cyst-type or abscess-like lesions to non-inflamed, hard lumps to painful, rounded deep-seated inflamed lesions with subsequent scarring and chronic seepage (suppuration --- hence the name).

These hard lumps occur under the skin and may be as large as baseballs in some people. They are very painful to the touch and may persist for years with occasional to frequent periods of inflammation. Inflamed lumps lead to extensive draining and the development of sinus tracts, or tunnels under the skin, which heal slowly or not at all and can lead to further inflammation and lumps; bacterial infections are possible at these sites. The HS sites can be painful and the pain can occur 24 hours a day, 7 days a week for HS sufferers during flareups. The sites can have drainage, which may have a foul odor.

The pain, the drainage and the odor can often limit activities and cause depression so that people often do not or cannot work, or even go out in public. Most often, HS goes undiagnosed or misdiagnosed for years. The patient ends up in a very expensive and exhausting futile search for help. So not only is the patient dealing with a painful problem – they are following a trail of useless treatments. The pain pushes the patient to seek relief, only to be met with failure. The stress from the building sense of hopelessness – exacerbating the pain, depleting funds and ultimately can result in depression. In addition to depression, there are many other physical and psychological impacts and effects HS can have on a person. You can read a few personal HS experiences at:
http://www.hs-usa.org/living_with_hs/impact_studies.htm

What we want you to know:
> HS is a horrible disease. HS not only effects you physically but can also affect you mentally. Many people with HS also have varying degrees of depression. Your self-image can be affected. It can also cause problems with family, friends, relationships and work.
> No known cause or cure
> No research being done
> Classified as a rare disease but the current numbers say otherwise. The most generally accepted statistic is now 1 in 300. A rare disorder usually means 1 in 10,000.
> HS is often undiagnosed for many years
> HS is often misdiagnosed; only a relatively few physicians and medical professionals are able to recognize HS, and even when they do … (continued in next statement)
> HS is often mistreated; the suggested treatments are often ineffective and are even sometimes harmful; all too often, long term antibiotic use is the most used plan of action – wrong – very bad. Surgery does not cure HS. Surgery can have its own complications, which can be worse than the HS. All too often, HS returns to the surgical scar areas or moves to another area of the body
> Physicians are often misinformed about HS. There is a lot of misinformation and untruths about HS, including a lot of absurd and ignorant ideas. Receiving misinformation can have detrimental effects on some patients, up to and including suicide.
> When cultured, HS drainage is most often sterile (so why are antibiotics prescribed or expected to help?)
> HS is not contagious
> HS is not caused by smoking
> HS is not caused by weight
> HS is not caused by lack of hygiene
> HS is not a woman’s disease; HS is not a black person’s disease; HS is not a poor person’s disease. HS can happen to any person, regardless of gender, age or ethnic background.
> Children can and do get HS, even at ages younger than what is considered to be the normal puberty ages.
> Menopause does not make HS go away
> HS can be debilitating; many HS sufferers are unable to work.
> HS can be painful; HS can be very painful; the pain is not in our heads; there are times that some people do need pain medicine.
> HS can be located on other parts of the body including face, legs, scalp, neck, etc.

Our Hope - what we hope to accomplish:
> Research and research funds – for a cause and a cure; at the least, for viable, safe treatments
> Accurate information/accurate diagnosis/informed medical professionals
> Re-classification from a rare disease to what HS really is – a very common and widespread condition
> Spread the word about HS – there are so many people who have HS and don't even know that their ailment or condition has a name  (+ info)

Have you ever heard of Hidradenitis Suppurativa?

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I went to the dermatologist because I had an abscess on my leg and it wasn't the first time I had one. I asked her what could be causing it and she said, "You have Hidradenitis Suppurativa" I had never heard of it before and I did a little research on it and I don't think she's right. If I do have it, it's a mild case. How can she even glance and me and know what it is? Is there a test you can take or just something they look at and diagnose?
H.S. is usually hard to diagnose and many doctors misdiagnose it. I went through three doctors and a surgery before I was diagnosed. It's classified as a rare disease because of the lack of reported cases and doctors misdiagnosing it. Basically, to put it in simpler terms, it's a condition that affects your endocrine glands, i.e. anywhere you sweat. Your skin produces small holes (if you do have H.S., these holes should be visible which may have been how the doctor diagnosed it just by looking), the holes can look like little dents. The holes act like a wound allowing bacteria to enter into your body. The bacteria then causes an infection which leads to the abscess that you speak of. It can be very painful.

It's also known as a progressive disease which means that as you get older it supposedly gets worse. It shows up in three main areas on most people, the groin (it's pretty common), the chest (around or under the breast), and the underarm is another common area. You can get it in other areas even if you just have it in one at first. The good news, if you can call it that, is that you should expect it to reverse itself around menopause.

However, there are some things that you can do about it and some tings to look out for in the meantime. And its certainly not the end of the world. Many doctors reccommend losing weight if you have any to lose and I've had doctors prescribe me painkillers and antibiotics to take when I feel an occurence. I dont reccommend taking either one. I never took them simply because I don't want my body to build an immunity to the antibiotics and the painkillers can be addictive. I did lose some weight which helped. Also DO NOT LET ANYONE SURGICALLY REMOVE ANY OF THE AFFECTED AREA. It doesn't help because H.S. is a genetic condition (not even really a disease) and it will reoccur even after surgery. All that surgery does is leave you with scars and can create more of an infection problem for you. Make sure to be proactive. Avoid stress, that's probably the most important thing. I always got mine when I was stressed out, or under alot of pressure. The more stressed I was, the bigger and more painful my H.S. It usually felt like soemone had a hot needle and was slowly moving it through my chest with varying pressure. Not fun! But the condition can also be very mild and hardly bother you at all. I get alot of that now. Another thing to do is to keep potential areas clean and dry. When I go workout or when I know I'm going to be sweating, I have a little trick. I put antibacterial soap on the area to try to kill some of potentially harmful bacteria caused by my sweating. IT WORKS! Asprin is good to take as well because it's an anti-inflammatory and pain killer. Overall good health is essential as well, build up your immune system with the right foods and vitamins, help your body fight.

Hope this helps and just know that its a misunderstood condition and its hard to explain and there aren't very many people who will understand the extent of it but just be sure to take care of your own health and be proactive about avoiding occurences.  (+ info)

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