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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
Wow..while I agree with the feelings a lot of those people have, having had this disease for over 30 years, I have to wonder why they have let this disease get so bad. I control mine with diet, I quit smoking and I am gluten free. If I mess my diet up, I get a flare. I feel great most of the time and do still have small monthly flares right around the time I should have a period.
I was recently selected to participate in a study being conducted worldwide by Abbott Labs, however I had to decline after reading their rules. I did not feel comfortable putting the toxins in my body that they were offering, just to see if it helped when one of the side effects could be death.
Good article, but there are a lot of us on facebook controlling this dreadful disease with diet and clean living.
June 7, 2012 - 4:58pmThis Comment
This comment is for the eye rollers to the anonymous post about clean eating: Wow... people can make some harsh judgements when they don't really know your story, huh? How do you know this person hasn't suffered that bad just because they found a way to cope? We're all suffering this disease together, first of all... so let's not jump down anyone's throat for trying to EMPOWER HERSELF and SHARE her discoveries (isn't this site called EmpowHer?). I've suffered with boils the size of tennis balls, but I also ate a ton of refined sugar. I found a diet that works for me and did a lot of cleansing and I don't suffer from huge boils anymore. I still get some here and there, but I definitely notice it's when I eat sugar or gluten and it happens around the time I get my period. So that makes me think, "this is a pattern, what can I DO to CHANGE it?" It's not that people who get bad boils are eating totally unhealthy... but that maybe there are certain foods that can trigger the boils. These foods can even be thought of as healthy... like tomatoes, peppers, and potatoes. Since the medical field obviously isn't going to help, it's about finding things that do help YOU and YOUR individual body. I agree, I've suffered all the same emotions, but there came a point when I decided I wasn't going to suffer anymore, and I decided to deal and not let the disease control my life.
June 9, 2012 - 12:57pmThis Comment
I am glad that your HS is under control and also that you found something that has helped your flares. My guess is that you have not met many with HS based on your response. I've met others from all over the world and HS has no respect of person. Smokers and Nonsmokers,overweight and underweight,meat eater, vegetarian, vegan,daily exercise regimen or none. HS is like a stray bullet,you never know the target until it hits.
Lastly,controlling HS is also much easier when you are only a stage 1,how I wish I could have remained a stage one. The one common denominator that we have is that we have a disease that destroys lives and what works for one does not,will not,has not,worked for others. If HS were as cut and dry as your response,we would all have it under control.
June 8, 2012 - 6:28amThis Comment
I have met several people with HS. And like you say, there are other triggers. I am in phase 2 and so close to phase 3 that no assistance from the medical community forced me to seek alternative treatment. My post was to simply enlighten some as I am meeting people every week who are recently diagnosed or self diagnosed and asking about HS. I tend to steer people towards a better diet for many reasons. It was simply another point of view not mentioned in the article and if it helped one person then great. I did not "cure" my HS, I just took control of it. With every bite of food, I have to ask myself if it is worth the consequences. I make the choice. Sometimes I make a bad choice and pay for it.
I applaud the author of the article. Any news on the street about HS is good news. Obviously there are several drug companies taking notice and doing studies to see if existing drugs will also help HS sufferers. Like the disease itself, there are many opinions. For many years I just sat by and took it as my fate. I'm very empowered now that I have HS and HS doesn't have me. While my ways may not work for one, hopefully my lifestyle will impact ONE person. If so, then great, I made a difference instead of sitting by and letting this horrific disease keep me down, embarrassed, depressed, etc.
June 9, 2012 - 1:47pmThis Comment
You must not have a very bad case of HS and apparently not taken the time to get to know the many sufferers of this dreadful disease. If you had, you would know that not everyone reacts to treatment in the same way. Not all sufferers smoke or have a poor diet. I'm glad that you have found a way to control your HS, but you should know that it's not necessarily a wise assumption to group everyone in the category of "not controlling" this disease.
June 7, 2012 - 11:17pmThis Comment
You are welcome! I wanted to also post these links to groups that represent those of the HS community. If you have HS or know someone who does, I highly suggest connecting with these groups. It can be a tremendous help to network with others who are experiencing the same struggles.
http://hs-usa.webs.com/
This is the closed Facebook group I was allowed to join
https://www.facebook.com/groups/HSKnowledgeiskey/
This is another Facebook group that anyone can view their posts but you must join to post yourself.
https://www.facebook.com/groups/hsfaces/
June 7, 2012 - 2:21pmThis Comment
Thanks Michelle. I'm a sufferer for the last 12 years. I'm so blessed to have such an understanding and caring fiance. Honestly, I don't know how she puts up with me sometimes. I've an appointment to see Dr Alan Irvine in st James hospital Dublin on July 17th. He seems to be doing a bit of work on hs. This horrible horrible disease is slowly ruining my life. Ive asked my doctor if he hears of somebody looking for a Ginny pig to test out new treatments on, to sign me up. I'll do anything to try get rid of or just make it go away for long enough for me to forget about it. I hate hs.
June 7, 2012 - 12:08pmMy dream is to get through a day, without feeling a bit of pain and also to wear a white shirt and not have to worry about it. It's not too much to ask, is it?
This Comment
Emuaid is currently doing a research trial on this devastating condition. Our product has helped many HS sufferers with the pain and inflammation associated with the disease. We plan to publish the results as soon as the trial is complete.
June 7, 2012 - 11:22amThis Comment
Thankyou Michelle for putting out there our way of life.
June 6, 2012 - 10:09pmThis Comment
Michele, thank you so much for such a great article to help spread HS Awareness. I must also give a big shout out to all of the wonderful folks and my HS friends in "The Faces of HS" Facebook Support Group. These are the most courageous people I've ever known. Blessings to you!
June 6, 2012 - 8:17pmThis Comment