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Bee33

Updated 1y ago

Dealing with HS symptoms for 8 months, seeking advice

Hi guys! I’m new here! I feel like I practically live at my GP’s office I’m there for so many different issues but for my first post, I’m hoping for some advice from people with same/similar symptoms as me. I live in a remote area where specialist providers (such as a dermatologist) don’t live here permanently but instead come in a couple days a month. I’ve been dealing with what I THINK is HS in an active flare for almost 8 months now. I have sores on my right arm, armpits, stomach, inner thighs, buttocks, and breasts as well as my scalp that basically scab over and then fill back up and repeat ad nauseam. I’ve done a 7 day and 14 day course of bactrim and a 60 day course of doxycycline since November which seem to have reduced swelling and inflammation but not done much else and nothing has ever fully healed. We’ve done oatmeal/bleach baths, acne body wash, and hibiclens antiseptic wash for body wash. I’ve done all natural shampoos, tee tree oil, t-sal, prescription anti-fungal shampoo and prescription steroid shampoo for focusing on the scalp. All have made little or no progress (except maybe hibiclens… i still use that as body wash). The traveling dermatologist who comes here is kind of a joke, diagnosed me with folliculitis and never contacted me again and now I refuse to see him so anyone else I have to fly out of town for. Luckily, I got a referral from a couple different other providers at the same time to the Mayo Clinic and am preparing for an appointment with their derm department in about 6 weeks. For those of you with an “official” diagnosis… what was the kicker that tipped the scales between folliculitis (or something else) and HS? Any advice on what I should prepare for my appointment since I have to leave town for it and have some time? Other ideas of things to try in the meantime to heal the sores? I’m sure I’ll have other questions about other issues soon but this is the most pressing at this time. Thanks in advance!

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Andia

2y

I joind a support group for HS on social media before my official diagnosis. I was told by several different GP's that i jad folliculitis, an imbalance/impurity of my blood, staph infection....then finally after both kids were born i had a 3rd operation (other than the 2 c sections to get them here) amd the surgeon told me what i have. He suggested stopping hibiclens and instead to use acne body wash. That helped quite a bit. Then from the social media group i learned about food triggers. Tomatoes was one of the first things i took out of my diet. Then learned of other edible nightshades and removed most of those. Some folks have food triggers, hormonal triggers, sweating can make it worse, not sweating properly can also make it worse. There are lots of different options for "treatment" that do help without constantly running to doctors.

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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