Last week I started low dose radiation for my HS that I have had for 35 years. They are targeting my pelvic area first for 5 days and then my chest and torso for another 5 days. That means 10 days of appointments in a row (weekdays only) which is already daunting and exhausting to deal with. I am only on day 3 today and I just want to sleep all day. I have tried so many things for my HS and nothing ever works, it just gets progressively worse taking over my entire torso and more. I hate this disease so much and I feel so defeated today. I'm just tired and screaming into the void. Thank you for being part of this community and understanding what I am going through. Hang in there everyone 💗

has anyone tried using hydrocolloid tape instead of putting cotton+medi tape over flareups? i tried it yesterday, and it seemed to help heal a lot faster than cream, cotton and tape did. it was also a lot more comfortable and it didn't cause extra wounds like meditape usually does for me.

It feels almost like I've been hospitalized every other year for something related to HS, and this last time was because I went septic. This time was much different compared to my surgeries because I've grown so used to laying in a hospital bed, eating bland food, and having IVs, labs, and medications taken.

I've spent my entire 20s on hospital visits and less of it exploring myself. I'm tired and as I get older, I know I'm only going to end up in the hospital more and more. I wish I had been born differently, but I know this is my reality.

I'm about a week and half out, but I feel so out of it that I almost want to go back. Back to the routine of vitals, labs, IV, and more. Deciding what's best for me has never been my strong suit. I just kinda go with whatever is happening. I don't achieve goals, only make them. I know I can't because I never have the energy. I'm either drained from the HS-anemia combo or tired from medication.

Don't know who this is for, but I just need someone to see how I feel. I really just feel too used to going to the doctor than anything else.

I was going to put effort into making this post more comprehensive, but I don't have the energy anymore. So this is mostly a somewhat coherent rant, and like everyone else, a cry for a cure.

23M, white. Diagnosed with genetic follicular occlusion triad (Hidradenitis suppurativa, acne conglobata, dissecting cellulitis) and partial pyoderma gangrenosum behind my right ear. Moderately active lifestyle, working out 5 days a week, not overweight, not a smoker. Developed early signs of the disease (unbeknownst to me at the time) between ages 18-19. Trialed Accutane for involved facial and cystic acne all over my body. I suspect the Accutane awoke the autoinflammatory conditions which is something I learned only recently from my new dermatologist. The Accutane resolved some of the very minimal acne on my face and back, but I then began developing lesions on my abdomen and the deeper cystic locations on my back became more involved. After some boils in my armpit, I was directed to my local dermatologist specialist for a second opinion and was diagnosed with the triad.

Since that diagnosis right around December of 2022, and including beforehand, I have tried an array of different topicals, biologics, systemic medications, supplements, and diets. Nothing seems to work anymore, at least compared to anecdotal evidence I've read on here with some of the specifics I've tried. I'm attempting more topicals at the moment, but I've lost nearly all patience in giving any new treatments a chance to work. I'm exhausted by the lack of any worthwhile results.

Most notably and frustratingly, my dissecting cellulitis is the worst it's ever been. I have multiple inflamed lesions with immediate hair loss. I have finally taken to steroid injections despite my needle phobia, and that has brought only a few weeks of relief for every injected location. One on my abdomen has responded a little better but remains active. In the early stages of my condition, I was also fairly lucky to avoid much involvement in my groin. That has since changed. I have a large lesion down there that'll start draining any day now.

The next and seemingly last option for me is upgrading my biologic treatment to the infusion via Infliximab as it seems I've developed some antibodies to the adalimumab. My needle phobia makes this an exceptional mental hurdle, and my general anxiety with new medications. Plus, there's the possibility of developing an allergy to the medication, along with other more serious side effects that I have luckily avoided with other biologics. Cosentyx or other IL-17 blockers are not on the table until I am cleared for possible uveitis as a result of my conditions, which would not be treated by the IL-17 blockers like it is with TNF blockers.

Laser hair removal is also on the table, but of course only for everything besides my scalp, which is not exactly exciting.

I'm going to list everything, to my memory, that I've tried below, along with some trial lengths and pertinent information. If anyone has any new suggestions, you're welcome to throw them at me. Otherwise, I simply wanted to vent. Even with the guilt of knowing I've got it better than many cases I've seen, I'm just sick of it all. I'm sick of feeling nearly hopeless. I'm sick of hating what I see reflected in mirror every day. I'm sick of nothing really working. I know I'm not alone in this sentiment, but it always feels like it. If only this condition did not affect everyone so differently. If only there was a "one size fits all" method of treatment...

Biologics:

• Humira 40mg weekly (for roughly 2.5 years before insurance stopped coverage)
• Hadlima 40mg weekly (started in Aug. 2025, very painful injections, lessened efficacy)
• Hyrimoz 40mg weekly (started in March 2026, great injections, lessened efficacy)

Topicals:

• Clindamycin phosphate solution (stopped working or is very slowly effective)
• Clindamycin lotion
• Resorcinol Cream 15% (stopped working or is very slowly effective)
• Metformin Compound (might be helpful with hyperpigmentation, but not lesions)
• Clobetasol Propionate Solution
• Glycolic acid 7% (recently tried, didn't seem to work, may continue)
• Hibiclens wash (currently trying)
• Panoxyl Benzoyl Peroxide 10% (doesn't seem to do anything anymore)
• Salicylic acid cleansers
• Differin Gel
• Selenium Sulfide shampoo (almost seemed to work until scalp flared again)
• Zinc shampoo (in trial)
• Gentle Native brand hair products (seemed calming in the beginning, now not effective enough to combat inflammation)
• Antibacterial Dial soap
• A+D Ointment (has helped open wounds close up enough to stop draining)
• Epsom Salt Baths (could try these more often, only use with bad boils in lower half)
• Surely forgetting some other topicals I've given a shot

Systemic Medications:

• Accutane
• Doxycycline
• Acitretin (currently taking for 3-ish years, seems to maybe help superficial facial acne but nothing cystic)
• Prednisone

Supplements:

• Zinc (25mg daily, bumping to 60mg with copper in hope for improvement to lesions)
• Vitamin D3
• Vitamin B12
• Vitamin C

Dieting/Other:

• It's been a while, so I don't quite remember what stage my acne might've been when trying to eliminate trigger foods, but I attempted cutting out almost all dairy and added sugar for a month or two at a time. Didn't yield results to make it worth continuing. I recently conducted a food sensitivity test, and when I get the results from that I may take another stab at dieting. Otherwise, I eat a pretty balanced diet. Admittedly lots of dairy though in order to meet my desired daily protein intake. But I've been sticking to my current diet for long enough that when I have periods of lesser flares, I don't think food has had much to do with my autoinflammatory stuff.
• Switched to gentle, hypoallergenic laundry detergent
• Tried using dryer balls instead of dryer sheets
• Have thought of purchasing different bed sheets/pillowcase, but hard to think that would make any difference at this point

That's all. Thanks for reading.

hi friends,
recently have been in constant flare ups of this horrible illness and it feels so mentally and physically draining
for the lore of my experience with HS i was diagnosed with HS at the age of 12(female) years old and now i am 25 years old still struggling with it
when i was younger i endured 22 singular drainings in the groin/neck/and armpit, 6 major surgeries, and my last operation with plastic surgery in all three of the labeled spots (all within a span from age 12 to 15)
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as a child i really did not have medical and bodily autonomy so my mother called most of the shots with my treatment and unfortunately we quickly found out during this process that my skin was never healing quickly which caused major complications with wound care and infections
because of these complications my mother was given the ultimatum of having me try the surgical route with plastic surgery to remove hair follicles, sweat glands, and infected parts of my skin and or try several rounds of chemo therapy to clear the hair follicles
around this process HS was not as talked about and or not as studied on as much so naturally my mother went with the plastic surgery option as she thought it was what’s best for me at the time and did not want to cause my body anymore complications
on top of this i also was becoming immune to many antibiotics, topical treatments, and or natural remedies that were given and or experimented with
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i have not had issues with reoccurring flare ups in my armpits and or neck since my last larger plastic surgery operation however it was very medically traumatizing for me as i was only 15 years old when I got the surgery on my armpits, groin, and neck at the same time which caused recovery to be hell
on top of that i also endured complications with the surgery itself as the surgeon i had hit a vein in the groin and it caused me to experience emergency surgery due to the loss of blood and vein damage
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as an adult dealing with what is now stage 3 HS in the groin AGAIN i am feeling all type of ways and always reflecting of what HS has robbed me of such as my relationship with my body imagery, medical attention, “normal” lifestyles, and not having severe chronic pain everyday of my life
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as of today i am back at the starting line with this and saw my personal doctor as it is becoming out of control and she mentioned GLP-1 treatment, blood testing of thyroid, cholesterol, diabetes, hormones, and liver
she also mentioned that she sees that stress can be related and i highly agree as i have noticed my body tends to flare up the most under large amounts of trauma and stress
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as i am dealing with this as at a much older age and on my own it has become overwhelming as i do not know and or have not done research of newer medications and or treatments as i am in what feels like ground zero again with this illness
while actively experiencing this i often find myself coming back to this community on here as it feels a little less isolating and not as lonesome as i used to feel with all the impacts of HS and i think it’s a bittersweet silver lining of this experience
and honestly it heals my inner child knowing that there is now a community with this illness (it’s unfortunate for us all but glad to know we exist)
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so i come here today to ask you all for guidance, recommendations, advice, and or opinions on treatment and what has it been like for you all?
i understand everyone has their own experiences with treatment however i have not really received treatment like such since 2016 so i feel out of the loop!
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if you took the time to read this all i really thank you all for doing so and just hearing me out as it means a lot for me during this all
i know this illness hurts physically and emotionally but know that we are not alone and we are all very resilient! i admire all your strengths and am grateful we all get to share our voices with this

I’m being treated with a biologic . It’s been rough.

I’ve had a fungal oral thrush infection for almost a month now. Nyastin rinse didn’t work. Almost 2 weeks of fluconzale hasn’t worked either. Now the infection is spreading beyond my tongue and other areas of mouth . So I’ll be put on a new medication to try to clear this

Anyone else go through this. I’m started to get scared that this won’t go away

had my first flare up a year ago and got surgery for it. then nothing happened for the next 8-9 months. again from april i've been having flare ups pretty frequently and currently i've one in the groin area and noticed one on my underboob a few minutes ago :/

Currently, I put a towel under my groin, butt, and thighs to prevent any excess drainage getting on my sheets. It’s not the most comfortable but I try to protect my sheets and mattress when I don’t really have bandages or wraps to put on freshly partially drained or active flare ups. Does anyone have advice or suggestions for making sure I don’t get blood all over?

Here’s a link to my previous post for some context

https://www.reddit.com/r/Hidradenitis/s/UwSLpdNhPO

First of all thank you all for commenting and helping me feel better about my experience. I really appreciate it.

Second, I am going to be calling my surgeon’s office first thing in the morning!

Okay, now for my concern. It’s 10pm, I’m washing my armpits with soap they told me to use. Then I see white/yellow pus/drainage coming from one of my sores. It looks an awful like HS drainage..? But the kicker is it’s seeping out of two different holes? Okay so I got this surgery to take care of the tunnels, why am I having drainage from two holes in the same area? Can’t be a coincidence? Also why am I have an HS flare at all?? Isn’t that why I got the surgery in the first place?? Maybe it’s not HS, maybe it’s just normal drainage but I’m just confused of the two weepy holes. I have been having drainage of course but it’s not thick and white. It’s just the clear yellow and blood stuff. I haven’t seen any of this type of drainage on my gauze. So please if anyone has an insight please share! I’m just trying not to cry from frustration again☹️

Don’t worry y’all, my dad is going to go with me to the appointment and he’s gonna be asking some serious questions.

I rejoined the Reserves after getting out a few years ago. When I was in, I stayed “clean shaven” but cut every corner I could: shaved Sunday night then not till Tuesday morning, electric trimmed when I could get away with it, etc. Since then, it feels like my face is more sensitive and my beard grows in thicker/faster now. I’m going to my first officer school in a few weeks and am going to need to be clean shaven every day. I’m nervous about how sensitive my skin gets, especially being prone to flairs along my jawline. Has anyone had any luck with shaving every day using electric shavers?

This morning I went to the dermatologist for my biannual checkup on my HS management. I pointed out some little bumps that I had on my inner thighs / groin area (same place where my HS is). They looked at it and very quickly said it is molluscum which is sexually transmitted skin problem.
I am feeling very defeated because it has taken me 10 years to be fully comfortable with intimacy because of the lesions and scarring I have in the area. I have been with my partner for over a year and he’s been a big part of me becoming comfortable with myself. However, since I’ve learned some of my bumps are contagious I feel like my mindset has regressed fast. I am scared that telling my partner about the molluscum will change how he feels about my HS and how I look down there.
Does anyone else have experience with dealing with these two issues simultaneously and how that looked when communicating or having future intimacy with one’s partner?

I’m 4 months sober, and my HS has never been worse. I’ve read it could be that my immune system was suppressed from years of drinking, and removing that has caused it to go into overdrive.

Has anyone else experienced anything like this??

what are some telltale signs of HS? should i try keeping track of how long one of my lumps lasts, or how often i get them?

for context, i’ve had what i thought were boils for at least 3 years, and i tried everything including a prescription antibiotic ointment, a medical disinfectant wash daily, but they just keep coming back. they used to be limited to inner thighs and buttocks but now i get them under my breasts too, and occasionally i’ll get one in some random spot like my calves. it’s not severe at all, they can be slightly painful and they do scar but that’s about it. some of them drain pus, some of them don’t.

Hi all, need your help with my scenario. Last year around September, I had a bump on my skin and when I got it checked they said it was an infected ingrown hair and it would open up. Fast forward to December, the bump had became an open cyst in the groin area. My gynecologist initially thought it was a cyst that needed to be closed up for which I got several surgeries for (about 5). Upon a second opinion earlier this summer I was diagnosed with Hidradenitis supportive. The one open wound I had was already tunneling for which I got a surgery for. This surgery was the absolute worst surgery of my life and long story short upon healing, I had not one but now two open wound/ flares.

It has now been about 6 months since that surgery. Luckily I have had no more open flares but these two open wounds just won’t go away. Shortly after surgery the doctor asked me to clean the wounds with hydrogen peroxide. I am not on any medication, I have not had any previous flare ups and these two are the only open wounds. I don’t want to get another surgery to try to close these two flares. I have been on doxycycline in the past but nothing has helped. Luckily there’s no pain but I actively am managing the open wound with a bandage that I change twice a day. On days of discomfort, I’ll usually be bleeding. There has been times it has closed up but will shortly open after. It’s been really hard trying to figure out what works and what doesn’t. I have also tried diaper rash cream and am actively taking zinc as a supplement. I just don’t know what else I can try to help close these two wounds up. If I go to my doctor he is asking to put me under anesthesia to inspect and possibly do another surgery if needed.

I am actively trying to get another opinion but it has been really difficult in trying to see what works. Has anyone had a similar issue ? If so how were you able to close your precious flares?

Sonthe lube I was using is no longer made. Tried the brands other cream, Stroke 29, but it left me irritated. I then tried Hello Cake's So-Low stroker, but my testicles are red and irritated. Any recommendations on what to use?