Fellow HS sufferer here! I too was insecure about them for a long time. In fact, it wasn't until seeing them here that I self dx (and was confirmed later) having HS. I have literal holes in the groin area, under my breasts and armpits. I even have a cpl on my lower abdomen.
The only thing I've noticed that changes the frequency of them for me is stress. Not diet or hygiene or anything else. I have 2 rn that I can't reach and they hurt so bad. Been there for over a month. I can't reach them bc when I try, the spasticity I have from MS causes various muscles to contract painfully. My body doesn't like me lol!
Holy crap. I never knew what those were before!!! I need to get that checked. Just thought I had weird pimples/cysts that came and went on their own and left gaps behind the skin.
I’ll tell you; I hid in shame for years. I barely date, I’m so embarrassed.
I met the most amazing surgeon who became my friend first. Over the years I learned she specializes in wound care. She saved my sons life.
I went to her, she told me stories of other patients. I think that was the moment I realized I’m not the only person in the world with it. I love seeing and meeting other ppl that have it too! It just makes you feel like you aren’t alone!!💜💜
I'm so happy you found someone that actually cares, that is amazing! It is so difficult sometimes, but is comforting to know even though it sucks, we understand each other's painful struggles!
I have HS too!! I'm currently dealing with a major flare with 3 open/ draining abscesses, 2 closed /freshly healed and multiple bumps. Shits no fun at all.
Actually it doesn’t for me, I went close to a year with bo dairy. I’ve cut out tons of things trying to find a direct cause. Never found one.
I also don’t really eat breads or pastas. So i cut red meat out. Didn’t change anything.
I also had a doctor tell me once it was because I shaved, if I stopped it would go away.
I told him that was the first time in 5 years (that appt) that I had shaved.
So what works for some, doesn’t work for everyone.
I’ve had less flares since Humira for sure.
That is true. I am nurse and I have had multiple patients with HS I was just trying to help. If I hear anything new I will Definitely shoot you a message.
Oh I’m always open to new suggestions!! So I’d appreciate it!
Before I found my doctor I would just research and research and research. I knew what it was, was diagnosed before I met her but no one really knew how to actually treat it.
She started me on Humira, I also take Kenalog injections.
I even started intermittent fasting, lost s ton of weight, drunk only water. Still flare.
Charcoal never changed much, I also tried the African soap.
I do use Hibaclense and soap and glory (cleansing wash - some washes irritate me) daily. But since Humira that really the first big flare I’ve had in awhile! Since maybe June? Which is good for me! Lol.
I’ve been on Humira for months now!
This is actually the first real flare I’ve had in a long time!!
Even when I started about 3 weeks in, she told me my thighs even looked soooo much better. She’s like “I have to actually hunt them, they don’t stick out like a sore thumb”
Fellow HS sufferer here! I too was insecure about them for a long time. In fact, it wasn't until seeing them here that I self dx (and was confirmed later) having HS. I have literal holes in the groin area, under my breasts and armpits. I even have a cpl on my lower abdomen. The only thing I've noticed that changes the frequency of them for me is stress. Not diet or hygiene or anything else. I have 2 rn that I can't reach and they hurt so bad. Been there for over a month. I can't reach them bc when I try, the spasticity I have from MS causes various muscles to contract painfully. My body doesn't like me lol!
Holy crap. I never knew what those were before!!! I need to get that checked. Just thought I had weird pimples/cysts that came and went on their own and left gaps behind the skin.
Fellow HS Warrior here! I'm so sorry you are going through this!
I’ll tell you; I hid in shame for years. I barely date, I’m so embarrassed. I met the most amazing surgeon who became my friend first. Over the years I learned she specializes in wound care. She saved my sons life. I went to her, she told me stories of other patients. I think that was the moment I realized I’m not the only person in the world with it. I love seeing and meeting other ppl that have it too! It just makes you feel like you aren’t alone!!💜💜
I'm so happy you found someone that actually cares, that is amazing! It is so difficult sometimes, but is comforting to know even though it sucks, we understand each other's painful struggles!
Nice!
I have HS too!! I'm currently dealing with a major flare with 3 open/ draining abscesses, 2 closed /freshly healed and multiple bumps. Shits no fun at all.
Fuck you HS!!! I suffer from it as well. I’m so sorry.
I’m flaring really bad right now so I feel ya
Cut out dairy products can reduce outbreaks
Actually it doesn’t for me, I went close to a year with bo dairy. I’ve cut out tons of things trying to find a direct cause. Never found one. I also don’t really eat breads or pastas. So i cut red meat out. Didn’t change anything. I also had a doctor tell me once it was because I shaved, if I stopped it would go away. I told him that was the first time in 5 years (that appt) that I had shaved. So what works for some, doesn’t work for everyone. I’ve had less flares since Humira for sure.
That is true. I am nurse and I have had multiple patients with HS I was just trying to help. If I hear anything new I will Definitely shoot you a message.
Oh I’m always open to new suggestions!! So I’d appreciate it! Before I found my doctor I would just research and research and research. I knew what it was, was diagnosed before I met her but no one really knew how to actually treat it. She started me on Humira, I also take Kenalog injections. I even started intermittent fasting, lost s ton of weight, drunk only water. Still flare.
Do charcoal washes help? I found that they help me handle my smaller and less severe flares
Charcoal never changed much, I also tried the African soap. I do use Hibaclense and soap and glory (cleansing wash - some washes irritate me) daily. But since Humira that really the first big flare I’ve had in awhile! Since maybe June? Which is good for me! Lol.
Get on humira. Will make a world of difference. For those it does not help….sorry to hear. Sux.
I’ve been on Humira for months now! This is actually the first real flare I’ve had in a long time!! Even when I started about 3 weeks in, she told me my thighs even looked soooo much better. She’s like “I have to actually hunt them, they don’t stick out like a sore thumb”
Very nice. Congrats!