I’m so sorry this is gonna sound gross, but I just had a massive cyst between my breasts burst 💥 (I was in remission for a while) and the smell was awful 😣 it smelled like rotting cabbage 🥬. I don’t even eat cabbage! Also, it was so heavy that the smell lingered in my room for a bit until I sprayed febreeze 😅. I will admit the color was kinda pretty 😅😅 I almost took a picture but then remembered what it was and didn’t do it.

I currently disinfected it and used some Manuka honey 🍯 ointment 🧴. It’ll take a few days to drain but I’m so happy it opened up because the pain was unbearable 😭.

Thank you for reading. Apologies if I grossed you out.

First of all, I'm shocked I was able to find someone on the first try to drain it. It must have been that bad.

I've been suffering for days, knowing I wouldn't get help if I needed it, because I've been turned away so many times.

And then I found someone to help. And oh my god, the panic. I had a pilonidal cyst drained 6 years ago and I still remember it as the worst pain I've ever experienced. Turns out the hype lives up - the flare on my thigh was just as painful. Bawled like a baby and was shaking like crazy.

I'm so tired. I'm drained (pun intended). I'm defeated. You won today, HS.

I do want to take a moment to thank the nurse who held my hand the entire time, reminded me to breathe, and tried to distract me from what was happening. Best nurse I've ever met, you the real MVP.

Am I rambling? Is there a point to this post? I don't know, I'm too tired 🙃

Hi everyone
For those who have had HS wide excision and reconstruction in the perianal area, how long did it take after surgery that you started walking normally

I am so frustrated.

I know that laser was never a fix-all and magic cure, but I am so frustrated and worried after my first new flare site popped up this past week after about a year and a half since my last new site. I tried to convince myself it was a bad ingrown, but theres no denying it at this point. I know the whole HS shtick is that its incurable but I'm scared and frustrated. I'm 25, don't smoke, exercise, eat pretty healthy, and don't know what else I can do to help things at this point. I'm like an early stage 2 - I previously only had 2 tract sites in the groin and one in my armpit that THANKFULLY is dormant 90% of the time and has never come to a head. I've been to the dermatologist, bought the Hibicleanse, bought the sterilizing wipes, paid $1600 for six laser sessions - I'm just bitter and worried about possible progression. Has anyone else undergone laser and still proceeded to get new sites?

My Ordinary Glycolic Acid has been in my cupboard for months and I only just started using it. Decided to try it on my HS after seeing some comments on here and WOW!! It’s amazing. After literally less than five uses over three weeks or so, complete reduction to near disappearance of my HS. I’ve struggled with stage 1-2 HS in my groin intermittently for ten years, and it’s gotten worse in the last two. For the past year or so I’ve never been lump free, and I have noticed some tunneling getting worse. I’ve tried the classic remedies: antibiotics, topical prescription creams, even a high aluminum deodorant. Nothing has done what glycolic acid has done in just the last two weeks. I’m stunned??

Is this really a miracle worker? I’m seeking advice from any of the angels on here from posts 2+ years ago singing the praises for Glycolic Acid.

Is it still working? Do you still use it often?

Thanks in advance!!

Ive had HS since I was 10-11, got diagnosed when I was about 13, and now I’m currently 19.

No one in my entire state takes my insurance and I’m currently on the edge of homelessness, so paying out of pocket or much at all on my skin really isn’t an option. But recently due to stress my HS has flared up worse than it’s ever been. It hurts so much and the scarring is so fucking embarrassing I want to bash my head into a wall.

I’ve obviously been through the obligatory “shame yourself for “poor” hygiene and shower multiple times a day cause that’s gotta be it then shamefully drown yourself in Neosporin for a week when that clearly doesn’t work” but even that hasn’t given me much pain relief or anything. I know the one dermatologist I have seen in my life says it’s not good for the HS, but honestly neosporin has been the only ever thing that helped that wasn’t prescribed by my dermatologist.

Idk, fuck HS it’s got me really like, I can’t dat, I can’t put effort into my health or body when it’s like well I’m always going to have tunnels bigger than the ones under fucking Paris or whatever. And like fuck Medicare this shit sucks.

So I have the following items that i use randomly rn, can you guys please tell me which do you use when?

- Desitin rash cream
- Hydrocolloid tape
- Hibiclens
- Witch hazel
- Epsum salt
- Sitz bath
- Head n shoulder shampoo

I have severe HS since a few years. Some wounds are dried and some actively weep and hurt all fkn day.

title and also has it gotten worse for anyone?

i noticed when the water from my hair gets on me i sometimes flare so now i cut my hair super short and it’s better for me.

and i wash my hair like 4-6 times a week so its not that

I never thought HS would land me in the hospital.

It started as a pretty normal draining flare on the side of my breast. But it kept opening more and more each day until it was completely out of control. Within just 3 days of starting to drain, it was a 5x5 cm wound (about 2x2 inches, somewhere between a golf ball and a tennis ball).

It was bad enough that I was referred to the breast cancer team for a biopsy to rule out malignancy. I'm still waiting on the results but the team feels pretty confident it’s “just HS”.

My derm says it's time for a biologic, and I start Cosentyx this week. Reading the side effects list has me nervous.

For those who've been on it:
- How long before you noticed a difference?
- What side effects did you actually get, and did they fade?
- Anything you wish you'd known before your first dose?

This community has helped me feel a lot less alone with HS, and I really need that right now. Thank you :,)

Have had an open flair for about 2 weeks and finally got irritated enough to go find something that works.

These antiseptic pain relief whipes are INCREDIBLE.

they kill the bacteria, they help numb the pain, and it has aloe in it so it dosent get to dry from the bacteria killing! It also dosent sting at all, and im telling you, it hurt to put water on it.

I cant say its closing, I cant say its better.

But I dont have to wash my open cyct 3 times a day.

But I went from a 8/10 pain 2 days ago. To a 3/10 today.

But I finally feel like its manageable.

If your pain is getting to you. If you cant stand the smell. (This smelles like menthol lol)

These. Are. My. Holy grail.

Hello, I just wanted to share the things that seem to be working best for me. Background - dealt with this since I was a preteen, officially diagnosed about 2 years ago. Tried anti inflammatory diet with mild results. Main flareups are under arms, upper thighs, and mound.
Now what works: magic molecule antimicrobial spray, panoxyl 10%, micro dosing Reta.

- I’ve been using Reta at 1-2 mg per week because I read that it can help with inflammation. I’ve lost about 10 lbs over 8 months (but that’s only about 10% of what I could lose as I’m overweight) but I’m not on it for weight loss - focusing on my HS. I saw a significant reduction in flareups around month 3.

- I’ve used Panoxyl since my diagnosis to wash but I’ve started applying it and letting it sit for about 5 minutes in problem areas twice per shower for the past 6 months or so.

- I’m also using Magic Molecules hypochlorous acid spray on all problem areas and I feel this is helping a lot. I’m using it in place of deodorant as I’m very sensitive to it and not putting deodorant on my under arms I believe is also helping me. I spray it before getting dressed and while getting ready for bed.
I would say this combination has my HS symptoms reduced by about 90-95%.

Obviously everyone is different, but I just wanted to share incase it might help anybody else.
Summary:
1-2 mg Reta per week, Panoxyl 10% applied as a “mask” in the shower 2x, Magic Molecules hypochlorous acid spray 2x a day.

Hi everyone! I’m in Italy, around 30 weeks pregnant, and I’d love to hear how others managed their HS during pregnancy, particularly if you weren’t taking a biologic.

My HS is actually much better now than it was before pregnancy. It initially calmed down, then worsened after I was prescribed progesterone. It has since improved again, although unfortunately it’s still not fully controlled.

I’ve been taking prednisone, initially 50 mg daily and now down to 25 mg. Since reducing it, some existing tunnels have become inflamed again, and I’ve noticed what seems to be a new tunnel in one armpit. The symptoms are manageable, but I understand that new tunnels could mean progression even when the pain isn’t severe.

My dermatology team is recommending Humira to help me come off prednisone. I don’t want to stay on prednisone long term, but I’d really prefer to explore all reasonable alternatives before starting a biologic.

My biggest concern is starting it during the third trimester. The Italian prescribing information says that adalimumab may affect the newborn’s normal immune response and should only be used during pregnancy if clearly needed. I understand this doesn’t mean harm is inevitable, but the placental transfer and potential implications for my baby’s early vaccinations make me hesitant.

I’m also worried about infections, side effects, and the possibility of reduced effectiveness if I eventually stop and restart it. And I’d like to understand how the transition would work if I’m tapering prednisone before Humira has had enough time to help.

After pregnancy, I’m interested in discussing tirzepatide/Mounjaro because I also have insulin resistance and gestational diabetes. I know the evidence for HS is still preliminary, so I’m not assuming it would replace HS treatment.

For those who have been pregnant with HS:

How did your HS change throughout pregnancy and after delivery?

What treatments helped, particularly if you weren’t on a biologic?

Did anyone successfully taper off prednisone using another treatment?

Were local injections or procedures for individual tunnels an option?

If you started Humira during pregnancy, what helped you decide, and how were your baby’s vaccinations managed?

I’m not against biologics, but I don’t feel ready to start one at 30 weeks, putting my baby at risk is not an option.

I’m looking for experiences and questions to bring to my doctors, rather than instructions to change medication myself.

I have had HS since about 15 16. The flares as I aged got better to almost not having many. Got pregnant had none initially but entering mt 2nd trimester they got bad. The most I've had at once since being diagnosed and in the worse areas, my armpit area, the buttocks, with the labia majora and my thighs specifically being absolutely horrible and super painful. They went away for about a week or 2 and have come back, 2 of them on my labia again whicg got to 3x the size it was this morning due to inevitable friction and a third trying to appear at my bikini area, very small but I felt it when inspecting for more. It hurts to walk already with the pelvic syndrome disorder, now this. I want to cry/have cried. What can I do to just prevent it to some extent? My usual body wash that I use and it never gave me any issues has caused flares, I stopped and just used warm water and now trying Panoxyl to try and prevent them, I think has made it come back again. Any advice based from real life experience and results appreciated, other advice accepted. I'm desperate.

Hey everyone,

I've been dealing with some pretty significant boil issues lately—worse than anything I've experienced before. After doing some research, I came across information about HS, and I think it might be what I'm dealing with. The boil burst and released brown watery fluid with black particles in it. The healing process took quite a while since there was a large slit where it burst. Over time, the opening gradually closed up while continuing to drain mostly pale yellow fluid, along with occasional blood, pink fluid, and sometimes black particles before it finally seemed to heal.

After searching online, I found this forum and suddenly remembered something from my childhood. When we were kids, we'd do silly things like mooning each other, and I recall getting teased because I had spots all over my bottom. I've struggled with these my whole life and tend to pick at them, which causes them to bleed and leak fluid. Sometimes there's yellow pus and clear fluid in as well.

About three years before this major boil incident, I quit smoking and switched to e-cigarettes and vaping quite heavily. I only smoked regular cigarettes when I was having a drink, so I'm probably getting double—or even more—nicotine than I used to. I've read that increased nicotine can contribute to HS. I also enjoy drinking a bit more than I probably should in the past.

I've attached a picture and was wondering if anyone here thinks this could also be HS on my bottom.

Thanks so much for taking the time to help!

Hi everyone, I apologise in advance if this post is long.

I was recently diagnosed with HS from a private dermatologist after having what looked like a cyst since May this year which then disappeared but left an open-looking wound in my armpit. This opens and closes intermittently and discharges fluid when it’s open.

I have had multiple courses of antibiotics as it looked infected and was getting low grade temperatures with it. Those settled and my gp then suspected HS as the opening was still there. She started me on Lymecycline once a day. I was lucky enough to be able to afford an appointment with a private dermatologist to confirm the diagnosis as NHS wait times can take a long time.

The dermatologist was really good and informed, he diagnosed HS with an established tunnel which he believed may need excision surgery so he gave me a referral for a private plastic surgeon alongside advice of taking lymecycline twice a day, using clindamycin cream twice a day and prescribing Betnovate C cream for active discharging nodules. During the appointment the wound was fully sealed so I could only show him photos. However a day after the appointment it opened again and has stayed open since.

I can’t afford surgery privately so I tried the NHS route to plastic surgery which has now been rejected ( I’m currently unsure of the reason and wether it’s for a different route in the nhs ) but it was so frustrating and disheartening seeing the rejection as the open wound keeps getting bigger and I just don’t know how to help it. I’ve been having anti-inflammatory foods, I don’t eat any oily foods at all anymore, I’ve tried different dressings, the creams he’s given, the lymecycline, and Hibbiwash. I’m just at such a loss.

If anyone has any advice I’d really appreciate it, I’m sorry we’ve all got this horrible thing and I really appreciate everyone on here! I’m sorry again for the long post. 💗

I recently started getting what starts out feeling like cystic acne on my labia minora near the top. It starts out as a hard slightly painful bump under the skin and then within 2-5 days it comes to a head and will pop. The fluid seems to be pus. When it pops, I get instant relief. At first, I thought maybe it was an ingrown hair but since the first one popped, I’ve gotten THREE more. Basically, it seems like after one pops, 2-3 days later I get another one on the opposite side. When that one pops, a new one pops up on the other side. While googling, I came across HS, I’m just curious if this has happened to anyone else? I can’t get into a gyno for another month. I’m 28 and have never in my life had this happen before! 😭

I (24M) was diagnosed with Stage 3 HS in 2022. The earliest symptoms I can remember having were a cyst near my tailbone (I believe it’s called a pilonidal cyst), excessive sweating and odor from my armpits. For years I’ve been fed talk of surgery on my tailbone cyst but there’s so much active inflammation that I was told the flares would resurface after operating on the area. Then came the flares everywhere else…

The first one I got was on my right armpit. It quickly grew and when I went to my local doctor I was diagnosed with Stage 3 HS. He referred me to a dermatologist who I think treated me disgracefully. When I told her how much pain I was in she seemed puzzled. Her exact words were “Oh well I suppose some people just experience pain differently”. Everyone else who has seen me professional or otherwise has shown better understanding for the agony that this disease has brought me.

The flares soon spread to my groin, buttocks and my other armpit so they put me on Lymecycline, then when that didn’t work I was put on Doxycycline. A couple months later I was put on a weekly injection of Adalimumab and finally I started to have some sort of breakthrough where my flares went from being severe to mild. I was even able to go back working again.

Then in 2024 I contracted an eye infection that caused severe inflammation that left my cornea scarred. It started in my right eye and then spread to my left. About 60% of my vision in my right eye was blurred and I was effectively going blind in both eyes. With an amazing cornea specialist and months of treatment with eye drops, the inflammation calmed down and although my vision isn’t what it used to be, I am very grateful that I am not blind. I had artisan lens surgery in both eyes and now I’m doing okay.

However my HS has rebounded hard in the last year. My armpits, groin, genitals/scrotum and inner buttocks are completely destroyed with inflammation. I’ve been taken off Adalimumab and put on another injection called Bimzelx. I’ve been on this for about six weeks now and this has been the toughest period of having this disease that I think I’ve ever had.

I am never NOT in pain. I am ALWAYS hurting. Right now it’s my groin/genital area that I have it the worst in. My sleep has become awful because of emergency prescriptions and stress. In the last two months I’ve been put on Flucloxacillin antibiotics and Deltacortril Enteric steroids just to get me through the pain but now those two things have contributed to insomnia.

My head is in a dark place right now. My local doctor has put me on an anti-depressant called Mirap which is supposed to help me sleep but it hasn’t been helping as much as I hoped it would.

I’ve lost 40+ pounds since the beginning of this year just from being on a calorie deficit and it hasn’t seemed to help me in any way.

I’m holding out on the idea that “It needs to get worse before it gets better. Just let the medication do its thing” but I’ve been doing this same song & dance for almost 4 years now and I’m so damn tired.

All my friends are out working, going to college, travelling, building relationships, getting married, travelling or getting into new hobbies and I’m stuck here, spending my 24 hours in the exact same spot on my bed. Even getting up to go to the bathroom has me whelping in pain. This is humiliating.

If I didn’t have my mother I wouldn’t be alive. She takes care of me but I HATE having to be taken care of. She also has her health issues and it should be who is strong for her, but I can’t be and that makes me so fucking angry.

Dealing with HS since 2020 It’s been a journey. Most doctors and dermatologist aren’t too helpful if they aren’t educated well on the condition.

I recommend self draining the wounds at home for two reasons. Surgery will be better and they’ll get you in faster with a drained lesion, you may have a hole that doesn’t heal and 2, you reduce scarring significantly.

I’m not a doctor but out of everything I have tried, the following is what I wish I knew the first time I got a lesion.

1.have warm compress on each lesion every hour or two for thirty to forty minutes. You may spike a fever and it may be the worst pain you’ve ever had. Put a gauze between ur skin and compress because it will start to drain on its own. Like the hand warmers a STERILE warm rag in a bag. It has to be kept warm and DRY. I promise this is the best way to get relief from the pain. DO NOT LET ANYONE EXCEPT A DERMATOLOGIST OPEN IT UP OR CUT IT. Take ibuprofen.

1. Buy hibacleanse and take soapy showers with it in the areas and PAT dry with STERILE towel. If you don’t have sterile gauze use clean unopened sanitary pads. They absorb way more and stay in place. You don’t want the lesion to rub against skin rn. Wear cotton only and loose clothes.

2. Make online appointment and ask for oral and topical antibiotics so u get them today.
   Take them perfectly don’t miss a dose and take ibuprofen together with them.

3. Make an appointment with a dermatologist that SPECIALISES in HS and specifically ask for surgery’s they do and post surgery treatment. ASK THEM DIRECTLY ABOUT THEIR PATIENTS RECURRENCE RATES. A plastic surgeon may also be a perfect option if u have good insurance, they will leave the smallest scars and low recurrence rates.

4. Start planning for laser hair removal and bring up biologics to ur derm. Once you get a lesion, it will create a tunnel so get rid of the hair. Accutane could be a good option if u tolerate it

For biologics, there are some that have worked much better than others like Bimzelx.

Hello all, i had a de roofing done underarms both right and left axila and 4 months into post recovery i had a big flare right under the deroofed area.

I had issues with my deroofed wound closing up in final days of healing (over granulation)and my dermatologist suggested kenacomb ointment to be applied for area which resolved the issue in about 2weeks or so.

Now with my recent flare right under deroofed area, which left a void, I started using kenacomb again and it really helped to close that wound quickly within a week.

Just wondering if anyone had similar experience?

Im taking accutane for my face and body acne and its working so good so far skin wise, but my hs became so much worse bumps and bleedings its got too painful. Is it possible that it will subside cause i really want to keep taking the medication for my acne.
Anyone been through this ?

I was recently diagnosed with HS, it runs on my bikini line. I'm a nurse, so scrubs and the inseam on them are not kind to the area affected. Does anyone know of any scrubs that are a bit easier on that area?

TIA!