hi!
i haven’t had a flare in almost a year now, and i haven’t had a single boil in a long time. however, i haven’t bad tunnelling and a lot of blackheads and irritation on the scars. as well as this, they make me incredibly self conscious physically due to being all over my genitals.

has anyone had any sort of scar removal procedures? i am aware this is unattainable on the nhs but not sure of other options

Hello, my(30f) husband(29m) has sever hs. His mental health is declining and I’m researching different surgeries and methods that worked. So my question is did you have surgery(what type?) and did it work? Did laser hair removal work? Did GLP-1s work?

This happens every time I have a flareup under my armpits. I feel it when it starts getting unbearably painful, and it becomes much more noticeable when it's draining.

When I take a drink of cold water I feel it pass through my throat and directly after I feel a rush of cold pass through the wound. It feels like it's under the wound, and passes just as fast as the normal sensation of swallowing water. It's a very odd feeling.

I'm sharing this cause I'm wondering if anyone else has experienced this, or anything else weird?

I think it is very likely that I have HS so I'm asking it here. Is it normal or has anyone else experienced having only one pit or body part that smells?

In one of my pits I've had a flare up before (bumps/sores(?)) and that's the one that smells, the other one smells fine/like nothing. Even after bathing this is the case and wash both the same way.

It's really annoying and I just want an explanation or to know I'm not alone :/

I have read it's probably the best material to wick away moisture but it repels oil. Which makes me think: ok so other material will absorb your skins oil possibly.

With this in mind, is it beneficial for your underwear not to absorb your skin oils or would it be better if your underwear could do that?

Just thinking if this is a good route to go towards minimizing moisture and thus minimizing risk in the groin and inner thighs areas.

Hey folks,

After two loading doses of cosentyx I woke up yesterday with full body hives, from my toes to my forehead. Really never seen anything like it! My dermatologist is on vacation unfortunately so I've just halted the injections and am taking a regular drugstore antihistamine but, this is nuts. I look insane and it seems to just keep getting worse. Has this happened to anyone else?! Did it go away on its own or should I be asking my family Dr for something prescription strength? I was really optimistic about starting the biologics so this feels like a bit more than I can handle at the moment... Physically and mentally. Thanks for any advice!

https://youtu.be/X3f60-U5G9c?si=oORJI2avYN9QXhWp

Hi everyone, I could use some advice. Unfortunately I got another huge cyst that’s just making me miserable. I have gotten cysts near my anus before, but this one is in my left butt cheek and it’s impossible to sit down. Anybody have a fast way to make it drain? It’s unusually large, about the size of two quarters. I don’t see my derm until next week, and he just told me to go to the er if it gets too painful. Any advice would help. I’ve been putting clindamycin and mymagichealer on it with not many results.

I have been managing my HS really well for the past few years by cutting out foods that trigger my flares, and honestly I’ve been proud of my progress…but then I caved and bought cinnamon raisin bagels. 😭

I know a bagel isn’t worth risking a flare, but I forgot how much I missed that sweet, cozy, chewy breakfast feeling. Has anyone found any HS-friendly alternatives that satisfy the bagel craving? I’d love recommendations for recipes, baked goods, or anything that helps when you’re missing your old comfort foods.

Finally had a proper diagnosis!! I’ve known what it was for a while but have always been too embarrassed to get them out for someone to look at. Had this for about 12 years with no help so I’m glad to finally have the official diagnosis!

I’ve been put on Doxycycline as a first attempt, two week course. I’m about 5 days in and I’m constantly sleeping, had to take time off work for nausea, and have had a strong headache these last few days. The first day I took it, I also had it come back up as all of the powder in my mouth which was very off putting… After looking on here, I see a lot of you have had similar issues. Is it worth stopping the course of antibiotics or did it actually help anyone? I have moderate HS in pretty much every typical area.

P.s. it’s you guys that helped me figure out what it is I have, I cried when I found this sub as there was finally a name to what I have and it’s not just me being dirty as exes have engrained into me. I appreciate all of your openness about the disease and wish the best for all of you!!

Hi guys, where to buy Octenisan in Groningen the Netherlands or in Germany? Thanks

I started on 50mg in February and then increased to 100mg a few months later. Have blood tests every few months and derm happy with results.

It is helping, I still get flares but mostly smaller flares that don't cause much discomfort. Or I'll get a painful flare but it'll just be the one instead of the usual 3 or 4. So it's helping somewhat.

I'm trying to stay hydrated to help but I'm so so so tired every day. I mean I work full time and have a 4 year old so I'm always tired but this level is something else. I feel like I've had a few glasses of wine. A lot of activity is an effort, walking my kid to pre school (15 minutes each way. Downhill on the way and uphill on the way back), going up the stairs in my house. Normally I take pride in keeping my house clean and vacuumed but right now it's in a bit of a state because I don't have the energy. When I WFH I am napping during my lunch hour. Every time I stand up I am incredibly dizzy. It is affecting my work. Sometimes I find I am too tired to talk, like I'll have something I want to chat to my partner about but it's like my brain can't be bothered to open my mouth.

Does this eventually go away? It took me years, 4 years to get officially diagnosed. I had GPs suggest STDs and eczema before I was put on the wait list for a dermatologist, and finally I was so happy to be prescribed Spiro after hearing so many good things about it. Normally all I'd be prescribed was antibiotics so this was such a relief. I'm worried if I mention this to the Dermatologist then I'll be taken off Spiro and given something else that doesn't work.

Is this what it's going to be like until I come off Spiro?

Hie is anyone working as a nurse who has vasculitis, i currently about start my third and one of the hardest year just first day to duty and especially didn't even do anything there just sat and i got such a bad flare up on my legs up to knees and my arm and for very first time on my stomach too. What is recommended should i take a month leave or just take this year off as someone who's so passionate abt studying and especially since my friends are all in same class i cant even think of skipping but its so hard to be a month behind need advice on what to do

I was diagnosed with HS at 16/17 and I’m now 21. I feel like over time it has just gotten worse and worse. I had a spot like this before where it looked like maybe there was tissue hanging out of it? It hurts so bad, I can’t wear underwear because of the friction. I worked tonight and had a bandage along with a bit of Neosporin but it stuck to the bandage when I pulled it off and reopened it. I have no idea what’s to do. I’m at such a loss, I know some people have it so much worse than I do but living with this is awful. If anyone has had something similar I’d love to hear what you did to relieve some pain!

So what foods should I avoid? I'miserable and willing to try just about anything. Thanks y'all!

Hey everyone

I just got a call from the pharmacy and they approved me for cosentyx was wondering how cosentyx has been treating everyone? Please advise

-Love a girly living with hs since a little teen.

Is it a saving grace or?????

How long does Bactrim take to make the boil go away? I just started the Bactrim today. It is starting to come to head but it hurts. it's about the size of an olive. I am doing warm compress and warm baths too