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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."
At first, boils or abscesses may occur infrequently but then they develop more often, warranting more frequent trips to the ER or doctor to have them incised, drained and packed.
Many go from doctor to doctor trying to find answers, or even a correct diagnosis, as they search for treatments that will keep the “monster” at bay.
HS is often misdiagnosed as a variety of other conditions, often as a form of acne. But HS is not acne. It invades deeper in the follicle layer of the skin.
Some HS sufferers report numerous abscesses, all crowding for space in a groin or armpit.
Rick remembers a flare he had about six years ago. “Groin, Scrotum, Perineum, inner thighs all flared at one time ... I could not move in any way with out pain ...”
The pain from HS impairs people’s ability to perform basic tasks like reaching for things, or it impairs walking due to widespread groin swelling. Surgery also causes impairment of movement, especially in the armpits and in the groin.
Teri wrote, “The pain stops you from doing the simplest of things. Even brushing your own hair becomes impossible to do. When you finally decide you are going to work through the pain no matter how much it hurts you very often rip your wounds open wide. This makes things even worse.”
The traditional treatments of antibiotics, anti-hormone drugs and surgeries become endless for those with HS, and doesn’t seem to control the illness enough for people to regain control of their lives.
As years go by, those with the most severe cases of HS endure numerous procedures that have left them both emotionally and physically scarred.
Naomi reported, “I’ve had HS for 13 years. It started in my groin when I was pregnant with my daughter.”
“I had my first one on my 21st birthday and since then it has been hell. I’ve had so many operations on my groin, legs, anus, womb, cervix, stomach, and buttocks including three sets of skin graphs. I am on fentanyl patches and oral morphine for the pain and haven’t been dressing free for 5 years-- twice a day.”
And aside from the physical pain, there is the pain of social isolation that comes from having an illness you cannot talk to others about. Some are unable to maintain jobs due to the condition so end up on disability, which affects their self worth.
Kim wrote, “I live in fear of someone smelling me or a lesion leaking on my clothes in public. Which if you deal with HS, you know it is bound to happen sooner or later. I had this happen to me several times when I was working. I learned to bring extra clothes, just in case.”
She went on to say, “Socially, it has ruined my life. I have pulled away from my friends. I have sat a many hours in my home alone. Refused invites to social gatherings so much that my friends stop asking if I want to do anything.”
Teri added another important concern.
“Sex, one of the most joyous forms of physical intimacy between two people. But what if your groin area is permanently scarred? What if you constantly have oozing painful lumps throughout your external sex organs? What if the very act of intercourse causes severe pain? How long will your partner stay with you when they cannot share the intimacy that a life long couple should enjoy?”
Some HS members not only struggle with the illness themselves but also stand by helpless, watching their children suffer.
Louise expressed in frustration, “I still haven't forgiven myself for giving this sh**ty bastard disease to my daughter. I hope I am doing my all for her but HS will soon let me know.”
“I've been told it's all genetics and that's one thing we can't change. My oldest daughter has not got it and my youngest has said why me? I don't have the answers.“
One of the great frustrations HS patients encounter is that research and advancement for treatment of HS here in the United States seem to lag behind other countries, and doctors persist in giving treatments that don’t work. HS patients want to know why the U.S. medical community does not take more of an interest in their disease.
There is an old movie called, “Network” where the main character Howard Beale announces on the air “I am a human being. I’m mad as hell and I’m not going to take it anymore!”
The HS community wants others to know that they are human beings too and they are mad as hell that more isn’t being done to help them.
Sources:
1. Hidradenitis Suppurativa Explained by Marianne English. How Stuff Works. Retrieved May 1, 2012.
http://health.howstuffworks.com/wellness/men/sweating-odor/hidradenitis-...
2. What is Hidradenitis Suppurativa? HS-Org. Retrieved May 1, 2012.
http://hs-usa.org/hidradenitis_suppurativa.htm
3. Comorbidities of hidradenitis suppurativa (acne inversa). Sabine Fimmel1 and Christos C Zouboulis1. Retrieved May 1, 2012.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3084959
4. Hidradenitis suppurativa. Genetics Home Reference. Retrieved May 1, 2012.
http://ghr.nlm.nih.gov/condition/hidradenitis-suppurativa
5. This, that and everything. Retrieved May 1, 2012. Teri Blog.
http://tjkorri.blogspot.ca/2011/10/hs-and-self-image.html?zx=fb71e95b042...
Michele is an R.N. freelance writer with a special interest in woman’s healthcare and quality of care issues. Other articles by Michele are at www.helium.com/users/487540/show_articles/
Edited by Jody Smith
Add a Comment25 Comments
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 - 9:36pmThis Comment
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 - 3:23pmThis Comment
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 - 8:33amThis Comment
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 - 8:05amThis Comment
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 - 9:53pmThis Comment
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 - 8:19pmThis Comment
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 - 3:43pmThis Comment
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 - 1:53pmThis Comment
"Clogged pores and shaving are two of the causes of these legions"
June 9, 2012 - 6:40amThis 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.
This Comment
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 - 12:48pmThis Comment