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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.

Has anyone experienced HS in the neck and been dismissed by many doctors then invalidated by spouse and closest family?

A myHSteam Member asked a question 💭
Massillon, OH

I had breast cancer 2 years ago and was displaced from my long time career right before diagnosis. The cancer and multiple surgeries in short time pushed my body into overdrive. ER+ and PR+ DCIS Cancer and physical as well as mental trauma added extreme hormones and stress. Then throw in spouse not believing me and his entire family. I’m struggling I’ve been had a dermatologist that kept shooting the large cysts with steroids and telling me it was just cystic acne for 2 years. When she’s got my… read more

February 8
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A myHSteam Member

Hi, I would like to tell you what has helped me. I have been taking omega 3 fish oil for about 2 months now. I haven't had a flare up since about a week into taking it. I also take probiotics. My HS was really bad especially in the groin area but now it's gone Yay. I also use hibiclens (CVS brand) I hope this helps

February 11
A myHSteam Member

I literally have it everywhere. Every pore I have has something coming out of it. The only thing I can be greatful for is that most aren't red or swollen on the surface so you can't really tell I have them but my face...the swelling makes me look so different and ugly and old....it's just too much. What kind of life is this

February 8
myHSteam

Has anyone experienced HS on the neck and been dismissed by doctors and invalidated by family?

You're not alone in this struggle. Many people with HS face both medical dismissal and lack of understanding from loved ones, which can feel incredibly isolating.

HS on the neck is rare but does happen. It's often misdiagnosed Show Full Answer

Has anyone experienced HS on the neck and been dismissed by doctors and invalidated by family?

You're not alone in this struggle. Many people with HS face both medical dismissal and lack of understanding from loved ones, which can feel incredibly isolating.

HS on the neck is rare but does happen. It's often misdiagnosed as cystic acne, which sounds exactly like what you've experienced. A myHSteam member shared: "I get an average of three new painful boils on my neck every week." The confusion between HS and cystic acne is common because they can look similar, but a dermatologist experienced with HS should be able to tell the difference. The medical dismissal you're experiencing is unfortunately common with HS. On average, people see 15 doctors over seven years before getting an accurate diagnosis. One member said, "I've had medical professionals who didn't have a clue about HS."

The pain and stigma of HS are significant barriers to getting proper care. Members report that doctors often brush off the seriousness of the pain and discomfort, making them feel less important. One person shared how a doctor's negative reaction made them feel so horrible they couldn't even tell their own mother and grandmother. The emotional toll is real. Depression is common with HS, and one member said, "I never had depression until I got this disease! It is very mentally difficult." The combination of physical pain, medical dismissal, and lack of family support creates an incredibly difficult situation.

Here's what might help:

Seek an HS specialist: Look for a dermatologist who specifically has experience treating HS, not just general skin conditions. Knowledge about HS varies widely among doctors.

Get a second opinion: If your current doctors aren't listening, you deserve someone who will take your pain seriously.

Document everything: Keep photos, notes about symptoms, and how they affect your daily life. This can help validate your experience to both doctors and family.

The stress and hormonal changes you've been through can trigger or worsen HS, so your timeline makes sense medically, even if others don't understand it yet.

February 8

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