For Jessica, HS started when she was about 14 years old. She's struggled with the condition ever since.
What Is Hidradenitis Suppurativa?
Hidradenitis suppurativa (HS) is a chronic, inflammatory skin condition that is characterized by swollen, painful lesions that erupt in the hair follicles near the body's sweat glands. Commonly affected areas include the underarm and groin, but the bumps can occur in other places as well.
The disease is not contagious but it is recurrent, which means that the lesions can come and go. There is currently no cure, nor is there a standard course of treatment. HS usually begins as a single, boil-like abscess and then progresses to clusters of bumps connected by tunnels under the skin.
This condition affects each person differently. Some people have abscesses as large as baseballs whereas others have many small lesions that appear in the same area over and over. The lesions may or may not leak foul-smelling pus. Some people have many regular flare-ups and others only have a flare-up when they are particularly stressed. Flare-ups can be triggered not only by stress but also by hormonal changes (such as pregnancy) or environmental factors like humidity.
It's Often Misdiagnosed
Because HS isn't very common, many doctors don't have a lot of familiarity with the condition. It is often misdiagnosed as other skin conditions that tend to be more prevalent, including folliculitis, acne, boils, cysts (sebaceous, inclusion, and subcutaneous), furuncles, carbuncles, or herpes. Sometimes it's even misdiagnosed as the result of the patient's poor hygiene.
Signs and Symptoms
Since HS can manifest differently in different people, the signs and symptoms can vary. Here are a few of the more common ones.
- Nonfacial blackheads. These blackheads occur in areas other than the face. Small pitted areas of skin containing blackheads, often appearing in pairs or a "double-barreled" pattern.
- Red, tender bumps. These bumps often swell, break open, and drain pus. The drainage may have an unpleasant odor. The drainage is often streaked with blood.
- Painful, pea-sized lumps. These hard lumps, which develop under the skin, may persist for years, swell, and become inflamed like those described above.
- Leaking pimple-like bumps. These open wounds heal very slowly, if at all, often leading to scarring and the development of tunnels under the skin.
My Hidradenitis Suppurativa Story
As I said above, everyone who has this condition experiences it a bit differently. This is my own personal story.
Painful Bumps in Groin Area
For me, HS started when I was about 14 years old when I randomly started to get painful bumps in my groin area. I was a virgin so I knew it wasn't an STD but I couldn't figure out what it possibly could be. My family didn't have health insurance so I couldn't visit a doctor and honestly, I was too embarrassed to tell anyone anyway. I was overweight so I dismissed it as a "weight thing" and hoped it would just go away. Over the years, it came and went and luckily it was mostly dormant until I graduated high school.
It Spread to Other Areas of My Body
After high school, my HS came back in full force. Instead of being only in my groin, it was also in my armpits and under my breasts. This made for much more pain. At times, it was so painful that I couldn't lift or move my arms. At this point, I still didn't know what could be causing these problems or why I was being punished by this horrible disease.
Connection Between Stress and Flare-Ups
By now I had health insurance but didn't have a regular doctor and also couldn't afford the deductibles anyway. I started to make the connection between stress and more bumps, so I started learning ways to reduce stress and that seemed to help.
Then the Condition Worsened
It wasn't until I was getting married that my HS got really bad. Luckily, the bumps subsided and lay dormant for a while after the wedding.
Unfortunately, we had a very rough first few months of marriage. We were very much in love; however, my husband lost his job and we were without an income for a while. When he did find a new job, it was part-time and seasonal. Luckily his sister moved in and with what she paid toward the rent and bills, she helped us stay afloat. While this was going on, I was desperately searching for why I had these bumps and what I could do to get them to go away.
Over and over again, I kept coming to pages about folliculitis, boils, furuncles, etc. I knew deep down that none of those things were what I had. I kept searching until one day I finally found what I was looking for.
The Eureka Moment
I can't remember when, how, or what I was searching for, but I stumbled upon information about a disease called hidradenitis suppurativa. Reading through the symptoms, I just knew this was my diagnosis. This is what had been causing me so much pain over so many years.
I joined a few support groups and found that I was not alone. Finally, I had a group of people who knew exactly what I was going through and exactly how much pain I had to endure.
Suddenly, a huge weight was lifted from my shoulders. I now knew what the disease was called and I could finally try to do something to treat it.
Read More From Patientslounge
Treatments I've Tried
One of the first things I learned about HS, unfortunately, is that it's not curable. I can try to treat it, but there's no guarantee that any of the treatments will work.
To date, I have tried zinc supplements, turmeric, stress reduction, tea tree oil, and a ketogenic diet. Among these, these are the ones I've had some success with:
- Ketogenic diet: For me following this diet has worked well so far, but there are many HS sufferers for whom this does not work.
- Tea tree oil: I find that tea tree oil can help. A small dab on a new bump ("aliens," as we call them) will make it heal faster than if I did nothing.
- Stress reduction: I have noticed that stress does seem to cause flare-ups, so I do what I can to reduce stress in my life. Sometimes, of course, stress is impossible to avoid.
- Bandages: This may seem like a small thing, but I've found a brand of waterproof band-aids that I like. They're large enough to cover any bump that isn't in a sweaty/hairy place, and they stay firmly in place until I'm ready to remove them.
I know that some HS sufferers have been told that surgery is their only option. The affected areas are cut open and the sweat glands are removed and/or the roots of the HS bumps are removed. This surgery is oftentimes successful at first, but unfortunately HS can sometimes recur in the future.
How About You?
When did you find out you had HS? What treatments have you tried? How do you deal with the pain in your everyday life?
Resources and Support
- HS Foundation
Hidradenitis Suppurativa Foundation is a non-profit organization improving the lives of people affected by HS through advocacy, education and research.
- Hidradenitis suppurativa: Diagnosis and treatment | American Academy of Dermatology Association
If you have HS (or think you may have this disease), here’s what you can expect when you see a dermatologist.
- I Have a Rare, Chronic Skin Condition, and I Went to Questionable Lengths Looking for a Cure | SELF
Writer Allyson Byers shares her experience trying alternative medicine as a last-resort treatment to rid her body of hidradenitis suppurativa symptoms.
- Hidradenitis Suppurativa Support | Facebook
Support group for the HS community.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2011 Jessica
Share Your HS Story
Carrie Lee Night from Northeast United States on May 07, 2020:
Interesting hub :) I am sincerely sorry you live with this condition. I am a long sufferer of skin problems, while I do not have your condition, my challenges are currently excessive oil, pimples that can appear almost anywhere, excessive body hair and eczema. I get random itchy rashes and the docs just stratch their heads. I have been checked for PCOS but they said I didnt have it. Thank you so much for sharing to let people know they are not alone :) Have a wonderful and safe week :)
anonymous on October 04, 2012:
@anonymous: @Khakigirl. Same here. My little girl aged 15 was just diagnosed with HS. I've handed this down to her. I am absolutely devastated, since it didn't start showing for me until I was in my late twenties, and I only found out what I had about ten years later. She doesn't even have this time. Heartbroken.
bwet on September 16, 2012:
Great lens on hidradenitis suppurativa. It is a nasty condition. Glad you got over it. And yup it is definitely commonly misdiagnosed as boils, furuncles etc.
Michelle Mafra from Corona CA on August 02, 2012:
I Continue to suffer with HS stage III and I am always very happy to find some type of support. I truly wish there was more research towards a definite cure. My flare ups sometimes last up to 20 days and sadly I cannot move. Truly so painful. One misconception related to the disease is that it effects only overweight people and that is not true at all. After bringing theHS research to a doctor who misdiagnosed me and treated me for the incorrect disease for 5 years he mentioned that it was not possible that I had HS since I was not overweight, but after going to doctors in Turkey and Brazil I was finally diagnosed with the correct HS diagnose and had a confirmation from doctors of both countries. So hope this brings more awareness as well as this is a condition that can truly effect anyone. Ps. No history of HS in my family as well... Thank you for sharing your story and the support groups.
Jessica (author) from Southern Indiana on March 15, 2012:
@anonymous: Sending hugs your way. It's always bittersweet when I meet someone else who has HS. It's sad because I don't want anyone else to suffer with this disease but it's also good because it's nice to know there are others out there.
anonymous on March 15, 2012:
I've suffered with HS for 30 years. After being misdiagnosed many times, I finally found a dermatologist who knew what it was after suffering for 15 years. I'm so happy this awful 'hidden disease' is now out in the open and being dealt with constructively! Now my 20 year old child is starting to develop HS. Anyone who knows HS knows just how heartbreaking this is, to have handed down this disease before I ever even knew what it was.