What is Hidradenitis Suppurativa?
Hidradenitis Suppurativa is an uncurable skin condition, commonly referred to as HS. A person suffering from HS has swollen, painful lesions in areas that contain sweat glands. These 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 and there is currently no cure or standard treatment. HS never fully goes away and the lesions come and go. It usually begins as a single, boil-like abcess and progresses to clusters of bumps connected by tunnels under the skin.
Hidradenitis Suppurativa affects each person differently. Some people have abcesses as large as baseballs whereas others have many small lesions that appear in the same area over and over. Some people have many "flare ups" each year and others only have a flare up when they are particularly stressed. Most flare ups are triggered by stress, hormonal changes (such as pregnancy) or humid heat.
Hidradenitis Suppurativa is commonly misdiagnosed as one of these conditions:
- Cysts (sebaceous, inclusion and subcutaneous)
- Poor Hygiene
Signs and symptoms of hidradenitis suppurativa include:
- Blackheads occurring 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
HS started for me when I was about 14 years old. 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.
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 it was called or why I was being punished by this horrible disease. At this point, 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. It wasn't until I was getting married that my HS got really bad. Luckily, the bumps went down and laid dormant for awhile 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. We were without an income for awhile and then when he did find a 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 when I finally found what I was looking for. I can't remember when, how or what I was searching but I stumbled upon some information about a disease called Hidradenitis Suppurativa. Reading through the symptoms, I just KNEW that I had HS. 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 treat it. Unfortunately, that's when I found that HS is not curable. I can treat it but there's no guarantee that any of the treatments I try will work. To date, I have tried Zinc supplements, Turmeric, stress reduction and a Ketogenic diet. The best option for me is the Ketogenic (Keto) diet to keep HS in check but there are many HS sufferers for whom these treatments do not work. These people sadly are 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 often times successful at first but many times HS shows up again at some point.
MY PERSONAL Hidradenitis Suppurativa Treatment
These are some of the items that I personally use to treat my HS. They are not cures by any means but they do help minimize pain and suffering.
DO NOT TAKE THESE SUGGESTIONS AS MEDICAL ADVICE. THESE ARE SIMPLY THE ITEMS THAT I USE FOR MY HIDRADENITIS SUPPURATIVA.
Hidradenitis Suppurativa Awareness Ribbon
This is the proposed HS Awareness Ribbon. It was designed by me but the idea was a group effort.
Hidradenitis Suppurativa Resources
Find More Info and Support Groups
HS On Facebook:
Do you have HS?
When did you find out you had HS? What treatments have you tried? How do you deal with the pain in your everyday life?
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.