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HSCookie

2y ago

Seeking advice on Hidradenitis Supperativa

hello, I was wondering what stages you all might be in with hidradenitis supperativa. I am going to a specialist for the first time this week. I am both excited and terrified. my surgeon diagnosed me last year, but I have suffered since 2006.

Your answer

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midgirl

11mo ago

I have stage 3 as well and have also suffered since 2006. I just realized not too long ago that I've been dealing with this for over half my life...damn! It has been intense, lonely, and paralyzing at times. I was put through the ringer trying to get diagnosed, my mom took me to like 3 physicians, 2 obgyns, 3 dermatologists and the last time I saw a dermatologist was many years ago because he told me to " ride out the pain" when I went in to lance a cyst because it was located on my tail end and I couldn't do anything without severe pain. So I'm glad you found a specialist. How did it work out for you.
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ET104

1y ago

Stage 3, also. Currently hoping Remicade and lifestyle changes can keep it in remission enough so I can raise my children and continue working.
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chowdahead23

1y ago

I didn't know there were stages. I will research... I'm newly diagnosed.... The first doctor gave me differin. The second doc said I had dry skin and use coconut oil. I asked for a dermatologist referral and he said HS and I can manage it! I am only a few weeks in the medicine and it'll take a bit they say for good results. I am hopeful.
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GoldTransMan

1y ago

I have been in hurley 3 for about 8 years, now. I'm glad you found a specialist! It took me a LOOONG time to fi d a dr who was even a *little* knowledgeable on HS. I'm glad I found my Dermatologist, she also specializes in HS (specifically, atypical presentations). If I had one more medical professional tell me I had "the worst case of folliculitis" they'd ever seen, I was gonna start drop kicking people. 🤣
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JennySue

2y ago

Stage 3 / it has been so hard - my skin is incredibly painful but humira does help and my physician has been wonderful.
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Ashley92

2y ago

Does the humira have sife effects?
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GaymerGirl96

2y ago

Stage 3 baby, it isn’t fun
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HSCookie

2y ago

oh my. I am sorry to hear that. I am stage 2 currently, but It has been progressing lately. I wish there was something that really worked for us.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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