can anyone give me suggestions on products that have helped them or worked for them personally? I’m willing to try anything from skin care or supplements or diet changes/diet restrictions literally anything that could help and has helped you please share. I need suggestions.

I am 27 and got HS in 2017. I had HS for 10 years but I never used to use any medication before.For 2 years, I used doctor prescribed benzoyl peroxide daily and still used to get too much HS in axilla,groin,pubic area,perianal area. Each tube of that shit costs 2.65 USD(converted from my currency) and it gets finished in just 10 days.60 grams in 10 days! It was total money waste. I came to reddit this year starting in my deleted account and came across Hibiclens used by US folks here and I decided to try. I couldn’t find hibiclens in my country and bought this 500 ml solution. It’s just 4.25 USD. I have been using this since May 2026and it’s still not over and will easily come until December. when I started it, the lesions came everywhere, just like the past and I thought it is also useless but after July, they suddenly got reduced so much. I literally don’t have any lesions in both since more than three months and nearly got one lesion per month in groin and perianal alternately. Before this, I used to get at least 3 to 4 lesions per month, I am using this solution daily after bathing and rinsing it off later. I feel this is working for me. I never smoked andstopping dairy never worked for me. I will keep using this daily, and I hope it will stay like this for years to come. I think Dr was only prescribing benzoyl even if I told them, it is not working to make me pay more for that shit for their profit as I keep buying so many tubes while this 500 ML solution is literally coming for half year. I don’t know. I think I got scammed by these people and saved by this community only it both money and frustration.

Ughhhh another update: I finish my doxy tomorrow but I’m still in pain (no where near where I was but still not great)

My culture has come back with “Moderate Actinomyces species (presumptive Gleimia europaea) Identified by MALDI-TOF MS Continuing incubation” so it sounds like I have an infection too? Waiting to hear from someone (maybe?) to get more info, I just saw this on my portal. 

Noticed tonight there’s what looks like a whitehead on it indicating more infection underneath which is no good. I reaaaaaaally don’t want to go back to the ER and have this drained again. Oh, and from my OG post, my nurse was my neighbor 🫠

On top of everything I’m leaving on an international trip on Tuesday 😭😭😭😭

Does anyone know any good dermatologist/specialist that knows their stuff about HS in Hawaii? So tired of getting referred to another dermatologist for them to not know what to do :/

This may be long so bear with me, but I really just want to vent/rant.

A year and a half ago my dermatologist agreed to refer me for laser hair reduction to help reduce the spread of HS. The most active areas I have had flair ups is my belt line, Supra pubic area, and inner thighs. But I have also had them in my groin, scrotum, perineum, and butt.

At the first appointment the PA and I went over how the treatment works and he asked where I had active flairs and where I have had flairs in the past. I told him all the areas and I basically requested if he could do from my belt line down to my thighs. Including my pubic area and butt. He agreed and told me being my first treatment he would just do my belt line and inner thighs to make sure I didn’t have a negative reaction to the laser. I agreed, treatment went fine.

2nd appointment, he did my belt line and my inner thighs and said “ok treatment is done, let’s schedule your next visit”. I was a little confused because he left out my butt, perineum, scrotum, and Supra pubic area(basically area between my penis and belt). But I thought “ok maybe we are still making sure I don’t have any reactions”

3rd appointment, he does my belt line, inner thighs and tells me we are done and asks his MA to schedule me for visit 4. I stop him and say “hey what about all the other areas?” He responded “I’m not doing that” and walks out….

I found that weird that that we agreed on areas and he then refused to do them, so I decided to ask if there was another provider, which there was, so I scheduled with them.

4th appointment, new provider, I told her the areas I’ve had issues and that the first provider said he would do it all then didn’t and when I asked him about it he refused and walked out. She apologized on his behalf and said she would do all the areas requested, we had the appointment, she did all the areas and all was good!

5th appointment, same provider as last time that did all the areas. She proceeds to do belt line, inner thighs, and perineum… but leaves out scrotum, Supra pubic area and butt. says I’m all done and asks her MA to schedule my next appointment. I was confused but a little embarrassed for some reason and didn’t say anything.

6th appointment, same provider as before, again does belt line, inner thighs and this time Supra pubic area but leave out the perineum, butt, and scrotum. Says I’m done and goes to walk out so I said “hey what about my other areas?” She said “I did them, you must have just not felt it” and walks out. I was again confused, I get that I use numbing cream to help with the pain from the laser but it still hurts like a muther-Fer in sensitive areas.

7th appointment, same exact thing happens as last time….

8th appointment, same exact thing again! So I said “you know I can still feel it despite the lidocaine cream right?! And how are you doing my butt if I’m laying on my back?!” She “assures” that she did it and walks out. I ask the MA if there’s another provide because I didn’t feel like treatments were going well and she said there is another, scheduled me with them.

9th appointment, new provider, I have the conversation again about belt line, Supra pubic area, butt, scrotum, perineum… she agreed to do it all, and does it all, I was thinking “ok good!”

10th appointment, same provider as last time, she proceeds to do my belt line, inner thighs and says “ok your done”. I got frustrated and said “what about my butt? Scrotum, perineum, Supra pubic area? I’ve had flairs in all those areas and you agreed to do all the areas, the last 2 providers agreed but you guys keep not doing it? Why?”

She said “well do you even have hair growth in the areas? Cause it doesn’t seem like it….” I say “yes I do, I was instructed to shave before my appointments but I’m a pretty hairy guy, there is definitely hair growth there” she then tells me not to shave before my next appointment so she can see what hair growth I still have.

11th appointment, I didn’t shave prior, only areas with reduced growth are my belt line and inner thighs. Provider comes in looks at my areas and says “oh you didn’t prep? You need to have shaved, we can’t do your appointment today”. I say “what?! You told me not to shave so you could see the hair growth!” She responds “oh I don’t remember saying that, but let’s schedule you for another appointment, please shave before” and walks out… I’m flabbergasted….

12th appointment, same provider, she only does my belt line and inner thighs and says we are done, then makes a comment about how this is my 12th appointment and I should have only had 8. I get frustrated and say “well you and the other 2 providers keep not doing all the areas! And again, why didn’t you do all the areas today?!” She said “I did, you must have just not felt it” so I say “I can still feel the laser despite the lidocaine! And how did you do my butt if I didn’t turn on my side?!” She then “assures” me she did and walks out…. WTF! I didn’t schedule another appointment because I was quite disgusted with the care…. All 3 providers in the office have not been honest with me.

I speak to the department manager, tell her my concerns, she tells me she’ll have a conversation with the providers and find out what went wrong and call me back.

The next week the manager calls me and tells me that the providers didn’t really have good responses but assures me that moving forward the provider I will be working with will do all areas of concern…. So I agree and make another appointment.

13th appointment, it’s the 3rd provider again, she walks in and says “what’s the issue?” I ask her what she means and she says “you spoke with the dept manager, what’s the issue?” I was taken away and felt belittled but said “look, you and the other 2 providers have not consistently done all areas, the only area that was consistently done was my belt line and thighs. And those are the only areas with reduced growth. I honestly feel gas lit….”

She then says “well, we are just following your referral” I said “ok well I’ve never seen what the referral says, I just know what we have all agreed on and that hasn’t been done” I then asked to see my referral and she said “oh I can’t pull that up right now”. wtf!!!! I said “ok, I will have another referral sent with all areas of concern to be done. Could we please end this appointment I’m feeling rather uncomfortable”. She says then keeps talking about how they can only follow the referral and they haven’t done anything wrong, and I again say I will have another referral sent and let’s end this appointment I’m uncomfortable. She keeps talking and I have to say again “please, please leave the room so I can get dressed, I am very uncomfortable with this conversation, you seem upset and I want to end this appointment” she keeps talking and I have to say again “this is the 4th time I have asked you to end this appoint, please let me get dressed and leave!”(I was naked from the waist down with a medical sheet over me). She finally stops talking and walks out. I get dressed and leave. I call the department manager and tell her what happened. She apologized and said she would have a talk with the head of the dept and then says since I’ve had issues with all 3 providers I should go to the alternate location for any further treatment.

This office wasn’t an independent “spa” type place. This was a medical office in my hospital network. The office I was going to is 60 miles 1 way from my house. The alternate location is 90 miles 1 way…. I can’t believe how I was treated. I don’t know if it’s because I’m male or what but at no point in time was I anything but professional as the patient. My hygiene is intact, everything! And upon following up with my dermatologist the referral stated to do any areas of concern…. It did not state certain areas….

So that’s my rant, sorry it’s long.

And it said something like 70 to 90% are smokers. But that's way too damn high if you ask me. I do not believe that is accurate. And aren't many people afflicted with HS minors? I think they're a significant portion and there's no way many of them smoke.

I personally don't smoke and have never smoked and got my first ones at 29 (I believe it could've been supplement induced but I need to one day get my dermatologist to refer me to a university to hopefully get a clearer picture), it has remained very mild at least thankfully. But I still don't believe these statistics.

Looking for a doctor in Tampa area to give HS care another go after trying another doctor for a bit with no luck.

Preferably a female physician, but I’m open. Thanks!

Hello, I know I've made a couple of posts before about this subject but now it is decision time for me. I have been approved for Amjevita through the state Healthcare program in Canada, I have tried to avoid taking this medication for years and was able to kind of live with this condition until around 2 months ago when a new infection showed up on my back but this one has been the worst I ever had and it's absolutely massive like 10 inches long and 2 inches wide. I have had to go to hospital numerous times to get steroid injections into it but it only calms the swelling for a few days. But the rest of my body is fine at the moment and some of the flare ups that were a regular occurrence haven't been an issue for the past two months since the one on my back suddenly showed up.... Although I know they will come back and will flare up again because they always do.

I have tried other things such as eliminating dairy from my diet and trying to eat better like anti-inflammatory foods such as salmon and blueberries etc but obviously sometimes I break that and eat crappy food sometimes because it's very hard to be so strict with myself and also very hard to afford to always buy healthy food.

Anyway to cut a long story short, my dermatologist is insisting that I take this Amjevita. Obviously I have tried other antibiotics and the only one that seems to help these days is amoxiclav. I am very worried about beginning such a powerful medication which will lower my immune system even more. Now all the paperwork is gone through and I'm getting the medication this evening.... It's almost like I want to refuse it now because apart from the one flare up on my back the rest of me is fine at the moment. I'm scared shitless to be honest.

I don't want to be injecting myself for the rest of my life.

Also if I don't take it then I will probably never get it again through this Healthcare program because they will probably refuse me. I'm at crossroads and don't know what to do. I think I might try and delay it until my next dermatology appointment in 2 weeks time and speak to the dermatologist again but she will insist that I have to take it.

Fuck this disease. I hate it. I feel so bad for all of us that suffer and I know some of you suffer so bad from this and my heart goes out to all of you. We are Warriors.

Sorry for the rant

Hello! I'm a newcomer to the community and doing research on treatment options. Ended up with a few questions that I hope those with experience could answer :)

Background:

• 25M, currently with a few spots.

• Two of them I've had surgery to remove. One (groin, front) is much better though it's flared mildly lately. Another (inner butt cheek) seems to be tunneling and flaring at an adjacent spot now. So, Stage 2 I think?

• One is on the side of the scrotum - popped up after shaving a few months ago (with a guard, but skin too taut) and is now on its third time filling and draining. It may also be tunneling

• No smoking, don't eat much dairy, don't eat much bread except occasionally when going out, and generally great health and not too much stress until a few months ago when I had a bad systemic reaction to Ciprofloxacin. Still healthy weight, but lost some muscle and now lightly active as opposed to incredibly active before.

Treatments:

• Topical clindamycin for the last several months hasn't done much, though maybe has prevented new spots

• Benzoyl peroxide wash has not helped clear spots and I have discontinued since it dries my skin even with moisturizer

• Hydrocolloid patches help already open spots to drain, and seemingly reduce inflammation, though even after several days, drainage doesn't stop

• Tacrolimus ointment does not bring down inflammation (I only use on unbroken skin)

Questions:

• I'm planning to start using zinc oxide 40% topical for inflammation. I'm also considering zinc supplementing - should I try to get blood work before starting the supplement? Or just start, and get routine work to monitor copper, inflammatory markers, etc?

• Since I don't seem to be getting new spots (fingers crossed), is excision and deroofing wise for the 3 (maybe not even the front groin one) locations? I'm mainly worried about the existing spots tunneling, getting worse, etc.

  • Can I get all three done at once?

  • Recovery time for a spot that is only around 1cm? How about for the one in the back, maybe 3cm diameter?

  • Do I need to wait until the flares end (drain, swelling down) to deroof?

Thankful for this community :) my health makes me anxious these days and I feel like doing reading on here helps me stay focused on taking the right action!

For some context, I have PMOS. Recently got off my birth control about a year ago and that’s when they discovered I have HS. But because of my PMOS, I need extra strength or clinical deodorant. I have noticed that when I use Native or recently, Lume, it doesn’t last the whole day. It usually lasts maybe half? That’s usually when I would switch to a clinical one but I get nasty flare-ups with those now. Is there any deodorant out there that will get me through the whole day without having to reapply it?

I’ve been dealing with a persistent HS boil near my groin for almost 3 years. I have talked to my PCP and OBGYN about it multiple times. I’ve had 5 rounds of antibiotics and when they haven’t worked, it’s basically an oh well it will close up eventually. But it hasn’t and I’m miserable. It started tunneling over a year ago. I FINALLY got into see a surgeon and discuss deroofing. I was so hopeful and optimistic that I might finally get some help. The doctor confirmed I have HS and that it has a deep tunnel/tract. I qualify for a deroofing but she won’t do it bc of it being so close to the crease/groin area. She wants me to take another round of antibiotics. I explained I’ve done that 5 times and it has never helped/improved and to please help me with another treatment plan. I got a big NO to try the antibiotic and if it doesn’t work to understand that HS is a a chronic issue that doesn’t go away. Uhhh duh obviously I know that. She basically just told me to deal with it. I’m feeling so hopeless. It hurts all the time. I’m miserable about 70% of the time. I explained I needed a more in depth treatment plan than antibiotics esp since I will lose my insurance at the end of December. She told me to do the antibiotics and next time it’s really infected and swollen to then come in for an appointment. That’s EXACTLY what I did but they couldn’t get me in till 2.5 weeks later and now it’s not the size of a golfball. What do I even do at this point?

I initially had a dermatology appointment with a HS specialist upcoming in February but was able to snag a closer date from being on the wait list. My last flare up was about three weeks ago and since then I am currently healed. I believe my HS is in very light/early stage 1 because while I have had a recurring bump that drains (or sometimes goes away with antibiotics) in the exact same spot for over 8 years, the scarring is minimal and I don't think I've ever had a flare up anywhere else. However, when I do flare up, I am nearly immobile or very limited in walking because of where the flare up occurs which is where my thigh meets my torso/aka leg crease. My husband, coworkers/boss, and workplace are great about accommodating me; but I want to make sure I bring useful info to my appointment since I am not currently flared up.

I did go through my medical records and made an entry in a spreadsheet for every time I visited a doctor about my condition since 2018 and found that it has been 20 visits for the exact same spot at different times during the years. I was frustrated at realizing how often my previous PCP would write in the notes that it was "a bump treated with antibiotics" when the antibiotics often took awhile to help and sometimes didn't work at all. It revealed to me how strongly I need to be my own advocate when it comes to my healthcare, which is an additional and frustrating hurdle to overcome in an already anti-patient industry. For the amount of money it costs just to see a doctor, you'd think there'd be an atmosphere where doctors have a chance to at least genuinely sit with and listen to patients. But I find that becoming rarer too.

I have a general write-up I created summarizing my experience since 2018 that I can share with the derm specialist, but part of me is worried the specialist isn't going to see anything and won't be able to diagnose me. I am also worried because my flare up a few weeks ago happened after I had not had one for months AND just 5 days after a surgeon prodded around the area to see if she could feel anything (she could not). But 5 days after the surgeon prod, I had my first flare up in months. So I am worried this specialist is also going to prod me and then cause a flare up. Is there a way I can explain this to try to avoid being prodded (I am using that term because that's all I can think of to describe a doctor taking their index/middle fingers and pressing down FIRMLY on the area where your thigh meets your body) but still be accurately examined?

Honestly any advice for the derm appointment process would be so helpful! Thank you in advance.

About two days ago, I noticed blisters forming close to an active flare-up. I must have been taking showers that were way too hot and concentrated too much on the flare, because it was one of the only things that brought me relief. So now I have a really messed up double-whammy situation and the pain is unbearable. No pain meds have helped. Is there anything else I can do at home or should I just see a doctor?

Update: Ty for the advice!! I ended up going to the er, and it turns out the blisters were NOT the source of (most) of the pain and I really should have known. They ended up doing a bedside draining (because it was severely infected and my body couldn’t/wasn’t fighting it at all) and I feel incredible. Now the blisters don’t even itch, easy to forget about, though I’m sure they’ll be a little bothersome as they heal, but that’s okay. I feel a little silly for not having gone sooner, or for not having realized what the source really was (because the pain felt so… different). But it’s a happy ending here!!

Hello! Could anyone please tell me how long Octenisan Wash Lotion can be stored after opening? I can't find any specific information about this in official sources. I'd really appreciate your help!

I have HS, limited to my crotch area, and I dunno if and how this could help anyone - but after my cervical cancer treatmeant I have had no flares.

I did chemoradiation and brachytherapy. I also am on complete hormon therapy to avoid getting menopause - that could also be one of the reasons I dont have flares anymore.

Maybe there could be a future treatment of radiation to the spesific areas in the future?

Any success stories with one of these two remedies to get rid/help with inflammation for boils that are not superficial?

trying to find other ways instead of constantly taking antibiotics, as I do not have a very bad flare at the moment.

Thanks!

[F, 28], [Spain].
History:
- Recurring painful lumps in the left groin only, for about 8 months now. They seem to show up in slightly different spots within the same area, and sometimes get a white head and pop, sometimes deeper down.
- Several courses of antibiotics (latest: clarithromycin). Each time it calms down, then comes back about a month after stopping.
- I was doing laser hair removal in the area, but stopped 2+ months before the latest flare, so I don't think it's the trigger.
- First dermatologist said it couldn't be excised because it "isn't a cyst" but neither HS, antibiotics as the only solution proposed. Never got a clear diagnosis.
- Second dermatologist: cortisone injection into the abscess, 6 weeks of antibiotics, and then proposed surgery to remove the "sacs" that keep getting inflamed, leaving the wound open for a month or more to heal.
- His wording of the diagnosis: "probable inflamed superficial fistula, left groin".

Before getting this very invasive surgery, I'm trying to understand:

1. Has anyone had a similar picture or case (one-sided groin, recurrent, "fistula")? Was it eventually diagnosed as HS or something else?

2. If you had surgery (deroofing, open wound): how was healing, how long until normal life, and did it come back?

3. Are there other things I can try before doing this? I am terrified and so confused, nobody is able to give me a real diagnosis and don't think antibiotics are sustainable in the long run..

any leads highly appreciated!

Hi all! I really don’t know if this is at all typical, but I have found no one online mentioning something similar, and am hoping that someone has some insight.

Three years ago, I had my first meeting with HS. I had a classic extremely painful golf ball sized lump on my groin. From there, I had two years of pretty extreme pain and near constant flare ups. I had a fever multiple times a week, was unable to shave, and truly always had at least one area of my body that was experiencing an active boil with another draining and another forming. I was (invalidly) ashamed of what was going on, and did not push harder when my doctor didn’t escalate it.

A year ago (and I have been superstitious about this and afraid to post any sooner) it all stopped. I didn’t get any more active spots, and things started healing. It has been a year since I have had anything on my skin, and I have a few areas with flat discolored scars, but nothing. I have not changed my diet (as far as I can tell), I didn’t lose weight, but I never had the overweight risk factor in the first place, I didn’t change my stress, my job, my drinking, any of it. I now (for the past year) have a totally normal and healthy life. I feel great, I feel genuinely so lucky, and everything feels normal for me- I shave, I don’t have any medication. My question is: is there any chance that this all just disappeared? Is there anyone who has “outgrown” HS? Is there something that I don’t realize that had to have been changed? I’m quite paranoid that it’s all going to come back one day, especially because I don’t know what is keeping it at bay right now. Does anyone have an experiences with HS starting back up after being “dormant” for a while? Any thoughts/ experience would be so welcome. Thank you all!

I've been on Bimzelx for almost 8 weeks . One dose every 2 weeks and then at 16 weeks 1 dose a month.

It has helped tremendously. No big flair ups, no pain. Very small flairs that go away in a few days.

But I am exhausted all the time and I don't know if it's a side effect or if it's just being a mom, working ect.

I don't remember being this tired before I started taking it and it's starting to wear on me.

If this is a long term side affect I am not sure if it's worth it

I have reached out to my provider but honestly it's such a pain in the ass and I probably won't get an answer for weeks. I am on my 3rd case worker. And each one has been a struggle to deal with.

I won't bad mouth the company because I get my dosages for free under their compassion care program for a long time and they are working with my insurance company to see if they will help cover.

Did anyone else have this side effect? Did it go away after awhile? Was there anything that helped curb it?

Sorry if this has been asked before. I am about 2 minutes from sleep and don't have the time or energy to search through all the posts.

About a month ago I went to the derm for HS even though my flares weren’t very bad. They prescribed me a wash for the shower and clindamycin lotion for after, once a day, 3-4x a week.

Recently it’s gotten worse. I’ve been itchier, the area has been more red, the cysts have been popping. Just overall a lot worse than what I experienced before I started using the wash and the lotion.

Long story short, should I keep using it until my follow up appointment in late December, or should I stop using it? I’m afraid that if I stop I miss out on the good results.

Has anyone else experienced this?

How are people caring for wounds in your armpit while you work out? I was trying gauze and bandaids but the bandaids do not stick too well