This is NOT just a Womans Disease. MEN have HS too. Because men do not go to the doctor as often as women, and it is believed because of shame and embarrassment, just like in the women, the numbers are not correct for the percentage of men with HS. Men you are not alone either. There is a group for you that you can discuss your private details with just around men here, is the website don't be afraid to get the help and answers you need. Depression and anxiety and all the other emotions are felt just as strongly by you as they are by women about this disease, so please do not hesitate to join and start getting the help you deserve.
HS has 3 stages
Stage 1 - Single or Multiple Abscesses Form, without sinus tracts and scars.
Stage 2 - Recurrent Abscesses Form, with tract formation and scar formation, There may be single, or multiple widely seperated lesions.
Stage 3 - Diffuse or near Diffuse involvement or multiple interconnected tracts and abscesses are observed across the entire area.
Not everyone advances to stage 3. Some never go past stage 1, or 2. Some only have one or two flare ups and never have any more flare ups they go into remission.
I was told By a Dermatologist and Surgeon and have read on the net, that once you go into menopause that it will go away. This is not true either, at least not for the majority. There are a lot of women that did not even have their first sign of HS until after menopause. I have heard of some that have slowed down in their flares but none have went into remission and stayed that I know of. Remember most Doctors and that is 97% of them know very little about this disease. They read what is available to them on the net, and approximately 90% of that information is wrong. But that is changing now, and has been changing in the last 5 years.
I&D is good for stage 1. I&D is Incision and Drainage. Where the HS is opened preferably by a Doctor but most of us old HS'ers do it ourselves (Consult your Doctor before trying this) and draining the pus out of the HS lump. And usually the doctor will prescribe Antibiotics about a two week course of them.
With Stage 2 and some stage 3 minor Surgery
And with Stage 3 Major Surger with Skin Grafts
Hidradenitis Suppurativa is found in the following areas:
Skin-bearing apocrine glands
Axilla
Groin
Perineum
Perianal region
Buttocks
Scrotum
Penis
Submammary region
Ears
Scalp
Hairline at base of neck
Back
Stomach
Legs
Feet
Ages Of Onset
Many develop Hidradenitis Suppurativa at or around Puberty. Many develop it in their late teens, while some do not develop it until their twenties upwards into their 50's and 60's. Once thought that you did not get it earlier than puberty, there are cases of children with HS as young as very small babies upwards to puberty.
Read here the updates to Social Securities guidelines to viewing Hidradenitis Suppurativa as a disability.
Complications of Long Standing Untreated Disease Include the Following:
Fistulae formation
Chronic Infection
Arthropathy
Depression
lymphatic obstruction
Marjolin ulcer (squamous cell carcinoma)
Scrotal elephantiasis has been reported, (an obstruction of the lymphatic system) making the genitals outer genitals VERY large.
Many times HS is often misdiagnosed or given the wrong name. Here are a few names that Doctors wrongfully give our disease, or as most people put it synonyms for our disease.
Acne Inversa, Apocrine Acne, Acne Conglobata, Apocrinitis, Verneuil's Disease, Velpeau's Disease, Fox-Den Disease, Pyodermia Sinifica Fistulans All of these diseases are true diseases or once were used (and some still are such as Acne Inversa in other parts of the world ) as names for HS.
On a lot of Hidradenitis Pages you will see that they have these names listed as other names for this disease. But the above diseases are not one and the same as HS. The follicular occlusion triad, which consists of Hidradenitis Suppurativa, acne conglobata, and dissecting cellulitis of the scalp, has been well documented to co-exist in the same patient. Pilondal Cyst was later added to the triad, making it a tetrad.
HS and Acne Inversa, In the U.S. we use HS and Over Seas they use Acne Inversa, which can mis-lead a lot of people that are newly diagnosed into thinking this may be two seperate diseases. It can also confuse Doctors.
Since they do not know as of yet whether or not this disease is a follicular occlusion, or a apocrine disease, the term apocrinitis does not fit our disease either.
Although I see why they say all the above names are correct for our disease, some countries do use one over the other, and some doctors here in the states do the same, there are differences in most of them. One name should be used for our disease, and then we would not be the so called (rare) disease, there is strength in numbers.
Question to ponder? Why would they want to remove the apocrine glands if this disease is not an apocrine gland disease? And why usually does the disease return in and on the same area of where they did the surgery after removing the apocrine glands? Go find the stats on the percentages usually 40% to 70% of returning HS on and in the surgery sites. Of course removal of diseased tissue and draining HS lesions and sinus tracks help many to feel better, here is where your research comes in.
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