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Welcome to HSDisease.com Stories!

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!

So 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.

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.

Comments

  • dukethedog1
    5 hours ago

    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!!

  • Bridgy
    3 weeks ago

    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.

  • AmylynV moderator author
    3 weeks ago

    Hey @Bridgy. We are glad you found this community. First, welcome! Second, we see you and hear you. We understand how painful and embarrassing HS is for folks, especially when it comes to being intimate with new partners. It’s exhausting to continue to explain yourself and educate people who have no idea what HS is. Even worse, those who are unwilling or able to learn and show some empathy- UGH!!😖

    Other than the steroid injections and topical cream, have you tried other treatment options? Thanks for your bravery in sharing a little bit of yourself with us. 💜 Sending hugs and positive energy your way, Amylyn (Team Member)

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