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Real members of myHSteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Which HS Symptom Surprised You The Most?

myHSteam asked a question 💭
San Francisco, CA
August 21, 2024
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A myHSteam Member

Hello All, my daughter was finally able to find relief after battling with HS for over 4 years. They put her on stelara and she had a surgery about 2 years ago to get the disease tract from under her arms and in her groin area. She's had minor sores since then but nothing like before. She literally had baseball size holes under her arms. They have now all closed and healed.

August 23, 2024
A myHSteam Member

Stiffness in joints makes it difficult to live active life

August 21, 2024
A myHSteam Member

Try and avoid red meat and cheese. Have plenty of vegetables and also drink plenty of water and green tea.

August 27, 2024
A myHSteam Member

The itching, for me is usually a hint - a tell tell sign that one is trying to form. Once it forms it’s just all pain. I have had a few on my face, last winter being the most trying as I seemed to always have at least two at once on my face (lip and nose areas usually), jaw, or neck. These bother me most emotionally. Then, there are ones are the rear that just make almost everything you do trying and take FOREVER to go away. Last winter I had one on the back of the thigh, exactly where to toilet seat hits when you sit. I cannot even describe that pain. I about fell off of the toilet a couple of times. (I now always use toilet seat covers or toilet paper at public restrooms to protect myself and others from me, just in case. At home, I wipe the seats down daily.) Anyway, I guess none of this answers the actual question. The answer to that would be - that I had a disease! I always thought I just “struggled with boils” due to my diet or whatever.

August 27, 2024
A myHSteam Member

I've had HS for as long as I can remember, I am 55 years old. I had my first surgery at the age of 12, but wasn't diagnosed until recently. I've had flare ups over the years, but since going through menopause, the old flare-ups and many new lesions have developed. I am wondering if hormones, or lack thereof, have been my problem.

October 12, 2024

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