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A myHSteam Member asked a question 💭
Dallas, TX

My question for you is ? What is the worst part of your HS . I know the answer is all of it but what is the one. The pain, scars,mental stress, or the smell? For me it's all .But the smell is it for me I've had this shit for 30+ years and the every day pain I guess is something I've got used to over the years and the scars really don't bother me but I do feel bad for you ladies and the mental is I will not let HS defeat me I will fight this shit until there is a cure or until they put me in… read more

November 25, 2023 (edited)
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Answer Summary

Members connected over the question of which aspect of hidradenitis suppurativa is the hardest to bear, with many expressing that while the... Read more

Members connected over the question of which aspect of hidradenitis suppurativa is the hardest to bear, with many expressing that while the physical pain, smell, and scarring are all challenging, the mental and emotional toll stands out as especially overwhelming. Several members shared practical strategies for managing symptoms, including using panty liners or pads for drainage, dietary changes like going plant-based or eliminating gluten and dairy, taking chlorophyll supplements to reduce odor, and finding relief through CO2 laser surgeries or IVIG infusions. A recurring theme was the importance of refusing to let HS define or defeat them, leaning on community support, finding peace through acceptance and faith, and taking one day at a time while holding onto hope for better treatments and an eventual cure.

A myHSteam Member

The mental health decline due to no true support system. I've truly have never been so low mentally. That's saying alot ice beat drug addiction and alcoholism , the death of both parents and both sets of grandparents. I'd go through everything all over day after day before ever wishing the mental torture of this disease

November 26, 2023
A myHSteam Member

This is The latest work I've had done

November 25, 2023
A myHSteam Member

You are right Eddie, it's all bad, but I think for me the pain is the worse. Because it's in my groin, the pain over the years has made it extremely difficult to walk. Although the smell is gross at times as well, because I am short I think the smell is far enough from peoples noses, they wouldn't notice. I am lucky I am a female, and there are panty liners and pads that are meant for that area, so I have never even come close to leaking through my clothes! I find any more, I am mostly in remission, but when I cheat and get a flare, there doesn't seem to be a smell any more???

November 25, 2023
A myHSteam Member

For me it’s painful 😓 but the mental health is it for me. Stress makes it worse and I stress to damn much about trying not to stress.

November 27, 2023
A myHSteam Member

Hi Coda. I’m sorry to hear of your parents and grandparents. It’s amazing that you have overcome drug and alcohol addiction. This condition affects us all differently. I finally found “peace” when I began to speak to family and friends about it. Wasn’t really easy but found relief and healing. Also accepting HS for what it was. Acceptable doesn’t mean giving up, but acknowledging it and letting go out what is out of my hands and allowing God to be my help and guide me. Bc in life we ALL will deal with something. My main triggers are what I eat and my hormones during menstrual cycle. So I went plant base with helps tremendously and still working on balancing my hormones. I have stage 3 so most effective for those areas have been CO2 laser surgeries. Still have a few to go. Hang in there and take one day at a time.

https://www.hs-foundation.org/hs-specialty-clinics

Here’s a link to some docs if you don’t have one.

November 26, 2023

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