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Living with Hidradenitis Suppurativa

By Michele Blacksberg RN HERWriter
 
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Living with Hidradenitis Suppurativa 5 5 14
what it's like to live with Hidradenitis Suppurativa
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Hidradenitis suppurativa (HS) is a chronic skin condition. It is characterized by abscesses, blackheads, inflammation, lesions and scarring.

HS forms painful clusters around the arm pits, the anal area, and the groin.

It occurs in places where sweat glands are present, or other skin-to-skin contact areas such as under the breast or even the folds of eyelids.

Numerous pus-filled lumps form, creating pockets as large as baseballs making it difficult to walk or raise one’s arm. These abscesses may persist for years, flaring up, draining, spreading and creating wounds that do not heal.

What often isn’t addressed is how devastatingly debilitating it is for those who live with this condition.

Not only do those with HS suffer from chronic pain from abscesses in various private parts of their bodies. They also must be constantly vigilant of odors caused from drainage, or be concerned that an abscess will open without warning in a public place.

Overall, people with HS are made to feel by doctors that they are unhygienic, unclean, and somehow at fault for the fact that they are suffering from this uncommon skin ailment.

I was invited by the HS community to join their closed Facebook group to learn more about the struggles those with HS live with. The following are excerpts of their stories.

Many HS patients recall periods in their youth when things began. Kim remembers, “as a young child I had a 'boil' on the back of my leg that was treated by a doctor. Still wonder if this was not my first lesion.”

Angela wrote, “When I was in my late teens and early 20's I would occasionally get one or two small boils in a year. I never saw a Dr. about it as they always appeared in my lower region of the pubic areas. They were sore and painful and I usually had to wait until they burst on their own or if they didn't and the pain was bad enough I would find a sterile needle and lance these sores myself ...”

Rick recalls his last day in Gym in High School. "A cyst in my upper inner thigh ruptured and drained down the inside of my leg while in the showers. Others who were present laughed and questioned my gender."

Add a Comment25 Comments

EmpowHER Guest
Anonymous

This actually made me pretty emotional. I've always felt like I was the only one with a problem like this and it's made me so self-conscious. I feel so ugly and have for years. This is no way to live, though, I'm only 20 and I don't want to feel like this anymore. I feel so mad at my dermatologists who have all been prescribing the same acne crap medication for years when I've told them THIS ISN'T ACNE, THIS IS SOMETHING ELSE! If they knew how physically and emotionally painful this disease was, they'd do so much more about it.

July 15, 2012 - 9:36pm
EmpowHER Guest
Anonymous

I am pretty sure I kicked my HS into remission (cured may be too much wishful thinking) with a month long hefty dose of minocycline coupled with a low carb/ low fat vegan lifestyle and quitting smoking. Quitting smoking might be the big one here (which REALLY gets me b/c I could have won this battle a long time ago if I had just had the willpower to put the cancer sticks down). I have been flare free since the beginning of March and it's now mid July. That has not happened since this all started back when I was 15 (now 33). I have massive and scary scars to prove this, but hopefully they'll fade with time. I think if we begin to fix ourselves from the inside out, we'll see a difference. I am pretty darn sold on the natural way of life now.

July 10, 2012 - 3:23pm
EmpowHER Guest
Anonymous

Emuaid is doing a research trial with 127 participants. They plan to publish the results once the HS sufferers have been followed for 3 months.

June 22, 2012 - 8:33am
EmpowHER Guest
Anonymous

This is a debilitating illness and doctors/ researchers need to start polling how many of us really live with this illness. Im sure there are millions!!! This is consistently listed as a rare of "orphan" illness but its not!! Im sick and tired of cries falling on deaf ears and visiting doctor who dont know what this is and how to treat it. I challenge everyone who reads these blogs to comment and take action in some fashion so that we can be counted!!!

June 22, 2012 - 8:05am
Melissa6666

If anyone of you are suffering with HS and thinking of the product called Emuaid I'd say go for it. This product will really help for HS. It starts to give you relief in two days and I couldn't believe the result I was seeing. I'm glad I'm all better. It is really not something easy to deal with, Emuaid will help you a lot I'm sure you'll be happy with it just like I am.

Melissa

June 15, 2012 - 9:53pm
EmpowHER Guest
Anonymous

I do appreciate the intentions of this article for bringing much needed awareness to HS, but I do want to add that the skin condition is a symptom of a much more complicated internal issue, which is that it's an auto-immune disease. Attention definitely needs to be brought to that fact because there are many more symptoms other than boils and this disease can lead to other auto-immune diseases if not cared for as an internal issue.?

June 9, 2012 - 8:19pm
EmpowHER Guest
Anonymous

I have had HS for at least 8 years? It seems questionable because I dealt with these lesions for several years before it was actually diagnosed. What I remember most is the outpatient surgical procedure to excise the legion under my arm which had become severely infected. I will never forget the pain... I have learned to tolerate using spray deodorant and antibacterial soap, but I simply can't go without shaving under my arms. Aerosol deodorant is so much more costly that I've found myself using speed stick because it's the only deodorant I can find that doesn't clog my pores. Clogged pores and shaving are two of the causes of these legions. Of course, I can't explain what causes the legions that appear on my bikini line or elsewhere in my pubic area. I've started a group on facebook entitled "Hidradenitis Suppurativa: Story of My Life" and so far 19 people have joined the group. I have discovered one thing that seems to help with the symptoms. It's called Defense soap and can only be purchased online. It's supposedly strong enough that UFC fighters use it to protect them from bacteria they may come in contact with while fighting and sweating profusely. I wish a doctor would figure out something. I just had one big lesion on my armpit, and even worse, this is the armpit that was opened up about 3 years ago. My armpits are permanently scarred and I don't like to wear sleeveless shirts for fear that someone may see the scars or the open sores under my arm. I'm still angry...

June 8, 2012 - 3:43pm
EmpowHER Guest
Anonymous (reply to Anonymous)

It's called armpit envy...who knew there was such a thing! I stopped shaving and use a personal trimmer. After a while the hair stopped growing so much.

June 9, 2012 - 1:53pm
EmpowHER Guest
Anonymous (reply to Anonymous)

"Clogged pores and shaving are two of the causes of these legions"
This statement is not completely accurate.True, HS does have to do with clogged pores,but not due 100% to deodorant or shaving.I have never shaved my underarms as I have no hair,but have had several surgeries to remove HS lesions. Thus far there is no known reason for this dreadful disease,it's all speculation. The weird thing is that no two cases seem to be alike.

June 9, 2012 - 6:40am
EmpowHER Guest
Anonymous

Anon wrote,"Good article, but there are a lot of us on facebook controlling this dreadful disease with diet and clean living."

Oh is it really that simple? Silly me. I guess the rest of us just eat poorly and don't practice "clean" living. Insert eye roll. With attitudes like that, I won't be joining this "miracle" Facebook group anytime soon.

June 8, 2012 - 12:48pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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