Welcome to HSDisease.com Stories!

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At HSDisease.com, we believe that we are stronger together than we are alone. Living with Hidradenitis Suppurativa (HS) can be a challenge, but the more we share and support one another, the better off we will be. Whether it’s your own story of how you manage HS to tips on daily living, we want to hear from you!

Please submit your own personal story about HS, and check back often to read about the stories others in the community share. We hope these stories become a source of inspiration and support for our community.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The HSDisease.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Ezcareclinic Member
Hi, well it's true that there is no cure for HS, therefore, you will need to manage your whole life situation. For many people, it is a cycle of rashes and periods when their skin is clear. Counseling will help them to recover their mental health. It is also common for you to say something in order to comfort your friend Help them to know about their triggers and how to control them Ask them to accompany you during treatment, involve them Participate in Lifestyle Changes/ activities to get over your anxiety Do not take HS for granted just adjust your life according to it so you can live your life in a better way.
1. Chelsea Freund Member
 <inline-mention username="Ezcareclinic" user-id="4501946"/> Thank you for your comments. This page is actually intended to be a link to share personal stories either as a patient or a caregiver or partner. If you would like to start your own thread, you may do so at <a href='https://hsdisease.com/forums' target='_blank'>https://hsdisease.com/forums</a>.
Tamwham1 Member
Has anyone been given MUPIROCIN OINTMENT to put in their nostrils? It will clear up the HS for a lil bit, but it comes back 😪
1. minelcannucciari Community Admin
 <inline-mention username="Tamwham1" user-id="4172963"/> – thank you for your question! I hope someone will be able to share their personal experiences. You might also want to consider creating a new forum discussion thread on our page to get some more visibility to your question: <a href='https://hsdisease.com/forums' target='_blank'>https://hsdisease.com/forums</a>, as some folks may not see this comment section. Hope you may find some more answers soon. It must be frustrating to only get a short period of relief. Best, Minel (Team Member)
Joey Torre Member
Hello to all, I’m Joey and I just want to say that I’m so happy to be apart of the team!! This is a great place to connect with fellow warriors, and I can’t wait to connect with you all. Stay strong, Mi Gente 💜💜
dukethedog1 Member
I have had HS for approximately 20+ years. I have never found anything that really helps healing. I have used many OTC creams, oils, etc. but it always reoccurs. I am now 80 years old and it is still hanging on. I go to a dermatologist as I now have fissures on both sides of my groin. Very painful as these rupture at least once a week. It is very hard for me to share this part of my life, but I know many of you understand!!
1. Selina Ferragamo Member
 <inline-mention username="dukethedog1" user-id="2400575"/> It's so nice to meet you and thank you so much for opening up about your Hidradenitis. I really am so sorry you've had to deal with it for so long, but I'm so happy you've found this page! We really do understand and are here to listen anytime you need to vent. I'm so sorry for what you've had to go through and thank you so much for sharing your story and being open about your HS experience. Sending you so much love and I hope everything at the dermatologist is helping!
2. Joey Torre Member
 Hello <inline-mention username="dukethedog1" user-id="2400575"/> thanks for sharing your HS story. You are so brave and all of us here truly understand your pain. Also, I’m srry to hear that you have so many reoccurrence with the boils. That is so awful. However, I just want you to keep fighting the fight and NEVER GIVE UP! YOU'RE SUCH A STRONG PERSON! HS WILL NOT WIN! Lastly, you’re not alone and we’re all here to connect with you when you need to speak with understanding people. Stay strong 💜💜
bridgy Member
I was diagnosed with HS about 7 years ago. Mine appears ON my breasts. Large, boil looking things. They ooze. And are so painful. And the large ones never QUITE heal 100%. The dermatologist injects steroids in some large ones, and I was given a cream.. but both my breasts are about 70% full of scars. Getting intimate now with anyone comes with me explaining things.. one man thought I had AIDS. I am no better, barely holding my own. And I am upset.
1. Juli Member
 <inline-mention username="bridgy" user-id="2400184"/> Hi, I know this is a year later, but before I got an HS diagnoses I was dealing with the awful boils on my breasts. I eventually had a breast reduction (covered by insurance) and it help tremendously. I might get 1 or 2 flares a year in the breast area now. The groin area is another story and even though I’ve been dealing with HS for 20 years, I’ve only recently been diagnosed. 
2. Chelsea Freund Member
 I am so sorry. I think we all feel like medicine should have advanced a lot further by now, but really it's only been in the past 10 to 15 years that scientists and doctors have had any sort of understanding about the disease, and that's because it's been studied for the biologics that are now being used, like Humira and Cosentyx. I personally have also had really good luck with laser treatments, which can be used through stage III. It's such a tricky disease. We're not even sure why everyone reacts so differently.