r/Hidradenitis

Hi everyone,

A bit of backstory, in autumn 2024 I was diagnosed with hidradenitis suppurativa, between then and August of 2025 Ive been prescribed Hibbiscrub,

Doxicyclin (3 month course)

Metrosa 0.75 gel (metronldazol)

Clindamycin hydrochloride (3 month course). None of these seemed to make things any better and the doctor said there was nothing else they could do for me and agreed to send me to see a dermatologist. In april this year I finally got to see someone, but in this time the condition has got worse to the point i cant get dressed most days as anything pressing against the skin is painful includes underwear, meaning I spend 90% of my time in pjs, because of where the problem areas are it can also be painful to be able to walk about so im pretty sedentary throughout the day. I constantly smell, i could wash 2 or 3 times and i genuinely still smell, i cant shave my armpits which naturally adds to the smell especially in the warmer weather and im now scared to shave my legs incase the condition spreads there too. (I can have anything from pea sized to golfball sized lumps, in my groin, armpits, breasts, stomach and thighs) My mental health has massively declined because of this, my social life has completely disappeared, i can no longer take part in exercise that i used to enjoy and i have 0 motivation for any of the other hobbies that once filled my day. At my dermatology appointment they suggested my options were surgery or biologic jabs once a week. So they ran some tests and im now waiting for a second appointment to find out what the plan is. However i also have anxiety which has recently spiraled in to health anxiety leading to me ending up at A&E twice in the last 3 months (first time i thought i had sepsis from a broken tooth and the second I thought i was having a heart attack after having shoulder and jaw pain) both times the doctor told me I was just having an anxiety attack and I was sent on my way.

So hers my question if people dont mind sharing

Firstly anyone who has the condition were there any other medications that you were offered besides the ones listed as I desperately want to try to avoid the jabs if i can and the surgery is not 100% for stopping flair ups coming back kn the same places, I hate my body as it is and dont particularly want chunks cut out of my body if its just going to continue to come back

And secondly

If you've been prescribed biologic jabs how have you found them/ any side effects/ have you found your ill more frequently. The jabs concern me as they lower the immune system and I have a primary age child who is forever bringing home bugs and sicknesses (but im also aware i will have to go back to work at some point and im trained to work with children which is what ive always wanted to do and spent 6 years training for but you cant be continuously off when your unwell) and with my anxiety already trying to convince me something is wrong with my health 24/7 im worried its going to lead to me being at the doctors/ a&e constantly

So im just trying to gather as much information possible so I can make an informed decision or fight my corner if there is other medications out there that I can try before I end up with the jabs.

Sorry its such a long read, thank you

I have a really bad flare up it’s hurts so bad when I move my arm or try to close my armpit. What works for you? What helps you get through painful boils? any tips is appreciated!

I developed a wound near my tailbone due to intertrigo, located at a spot that stretches when I sit down and stand up. I have no pain, tenderness, or abscess. My doctor told me that if I don’t lose weight, I could develop HS within the next 3–4 years. I would like to benefit from your experience on this matter. I am about 15 kg overweight. The wound was caused by mechanical stress tearing the skin, which had been weakened by intertrigo.

Hello all! I’m on a throwaway account because this is quite an embarrassing situation for me, despite having lived with severe HS for about 6 years now. My main affected region is my groin, I have had three separate surgeries due to tunneling, infection, etc. I am quite familiar with pain and unfortunately due to the severity of my condition, what would be most peoples absolute blinding level 10 pain, roughly equates to about a 3 or 4 for me. I recently stopped taking Humira due to the side effects it caused me and my insurance situation being up in the air. I was only on it for about 3 months, on and off due to having that big surgery after I started it.

I, 28F, have developed a boil quite close to my anus, no more than maybe half an inch. It spawned about 2 days ago and blew up QUICKLY. The entire swollen area is about the size of a tennis ball and it is finally forming about a dime size head on it (dark spot, skin is peeling around the area). Of course, walking and sitting are extremely painful. Laying is only comfortable with my leg propped up. I’ve had FAR more painful bumps, so I’m just doing my normal routine with it. Same thing, different day basically.

However, I noticed when I was going to the bathroom (#2) this morning, which I feared heavily due to the location of this monster, that I had more blood than usual in my stool. It wasn’t concerning then, I’ve got hemorrhoids and a history of smears of blood in my stool. The only concerning thing for me was I woke up with a sharp cramping feeling in my lower abdomen, around where the appendix is. I have PCOS, so I wrote it off as a cyst rupturing or bad cramps or whatever. It went away after about 30 minutes. Basically my stool was normal, healthy colored and textured stool but toward the end had streaks of bright blood running through it. I cleaned myself, placed a warm wet rag on the bump, and took a nap with my daughter. I woke up, having to go to the bathroom again. This time, there was less stool but more blood. When I wiped, there was a fair bit of blood on the toilet paper and it wasn’t bright red or dark red, about ruby red I’d say. Looking in the toilet, my stool was dark, in two small, lumpy logs, and heavily mixed with darker blood and what looks like the drainage that typically comes from my bumps. (Dark red, kind of brick colored, mixed with darker blood and purulent drainage)

I guess my question, and my biggest concern is… SHOULD I be concerned enough to go to the hospital? I’m not experiencing abdominal pain, fever, chills, ANY symptoms really other than the typical searing hot pain from the bump. I don’t like to get mine lanced unless it’s an absolute last resort and I’m in tears from pain. Which is exceptionally rare. And I am NOWHERE near that level of pain currently. But I had a bump recently on my thigh that I had to have surgery on and packed for weeks. My fear is, seeing the change in my stool, that it may have tunneled and broken through my colon or something. Can this happen? Does anyone have any experience with something like this happening? Does this sound like what is happening for me?

I know this is long but I appreciate anyone who read through all the way and is willing to offer legitimate advice and insight. I know Reddit isn’t a medical center and I know that the best case is to go to the hospital “better safe than sorry” but my local hospital is an absolute barbaric joke and I like to avoid going when possible. Plus, I am a stay at home mom home alone with my 18 month old until her dad gets home from work in the evening. I welcome any constructive opinions and advice!

Thank you!

I’m having kind of an epiphany, I realize that any time I drink beer, my flare ups get worse or I get new one. Kinda tragic cuz it’s so tasty. I don’t know if it’s just placebo or if it’s real, so can anyone else corroborate?

If Beer does cause it, is it the carbs that are causing my flare ups? Because I don’t think I’ve had a meal in the past decade that didn’t have SOME form of carbs in it, be it bread, rice, bulgur, potatoes, or whatever. Has anyone tried a keto diet/no carbs diet for HS? Did it improve your flare ups?

Lesbian relationship if this makes any difference in your answer

I have a very mild flare, under skin not open on my pubis mound.

I shaved recently and albeit stupidly…but I’m seeing my long distance girlfriend for the first time in 6 months and I wanted to feel sexy (dumb)

This is the first time I’ve shaved in almost a year.

It isn’t very bad, under the skin I do have a LITTLE razor burn but the actual HS spots don’t hurt at all.

How risky is it to have sex? Like if we’re rolling around,sweaty etc will that make it worse? Will it hurt

I’ve never actually had sex since being diagnosed and certainly have never had sex with any kind of flare.

I have lupus, been on Benlysta for almost a year now and am finally feeling well enough joint wise to have sex again. My girlfriend very nicely has waited due to my joint pain, so this would be our first time and I just don’t want her to be grossed out, I don’t wanna risk making them worse etc

I am so rural I don’t have access to a hospital or urgent care to visit closer than an hour away(farther than that for urgent care) and I have a bump bad enough I’m making pain noises in my sleep when I’m told to roll over.
This pain is nothing unsual just new spot that I’m not used to pain.
Family says telehealth. Kinda doubt they can do anything. Feel like I’m on pretty much every topical antibiotic they can throw at me already with no help of anything. They will pull up my chart and see I’m on a bunch of stuff for it already.
Has anyone done telehealth for this? Could they did they do anything?

I thought this could possibly be useful for people who have HS symptoms but haven't gotten diagnosed yet. For the past 3 years I've been suffering with repeated boils and abcesses on my thighs, for 2 years the doctors ignored my requests for a referral to a derm, but thankfully this year when I came into the gp with another abcess, she agreed to let me get some labs done and I sent in a sample of my pus which came back as positive for both PVL and MRSA (😭💔) pvl is relitively rare but causes basically the exact same symptoms as HS, like in my case which is repeatetive boils and abcesses that keep coming back even with countless courses of flucloxacillin (which is apparently bc this bacteria is resistant to most penicillin related antibiotics so the doctors have been giving me a useless treatment for three years 🫩).

However the important part is that treatment for PVL is different from HS unlike some cases of hs you can't really manage a pvl infection with lifestyle changes or diet changes, instead I got a 6 week course of doxycycline and antibiotic wash. So if you haven't officially been diagnosed yet with hs or have not gotten lab work done on the pus from your flare ups I highly recommend you do, especially since the symptoms are quite frankly identical, you could possibly have PVL which is very contagious and it's extremely important that you shouldn't get misdiagnosed with the latter in order for you to get the proper treatment to give yourself relief and prevent the spread of pvl if you were to have it.

I’m sure this is something that should be common sense, but I’m just not too sure how I’m supposed to go about getting a confirmed diagnosis that’ll lead to treatment for my HS.
I have struggled with HS for at least 7 years now. I have had to have 2 abscesses drained, and both times the doctors said they’re certain it is HS but has never followed through with referrals or anything to do about it. I’m currently struggling with another large abscess in my underarm and don’t want to go to another urgent care for them to drain it and send me on my way.

Should I get in contact with a dermatologist? Get the abscess drained at urgent care? I would really like some form of treatment if that even exists.

And if anyone does have any information regarding what treatment looks like please let me know as well. Thank you all!

Recently diagnosed with HS. Most is on my inner thighs, some on my butt. Recently I've had flares on new places which kind of scares me (around the hip bones for some reason). For a long time I thought I had a pilonidal cyst until my doctor told me it was probably HS on the exact same spot a cyst would be.

It's the shittiest ever, it's the only bump that comes back, it's usually after I spend a long time sitting without changing positions, and yesterday I spent 12 hours in the airport over a delayed flight. Woke up with that area hurting. Is there anything I could do to minimise it? It's always my worst bump because of the body area it's in, and especially with this heat it's going to take a good while to burst and to drain and dry out and it really debilitates me to the point of not being able to sit down, at all.

I don't think I really need to go into detail. But it was tremendous help. Very inexpensive and installed myself in 5 mins.

Just thought I would help share this as I also learned about this either on reddit or twitter. I saw someone preaching about how this spray helped them so much so I bought it. I got the brand e11ement(its what they also used) on amazon and honestly going to buy more as I don’t wanna run out and its still very full. I would estimate it could last me around 5 weeks if I keep spraying with the same frequency.

Its only been less than a week but already noticing my flares are much better. I spray in all my HS prone areas multiple times a day. After shower, after bathroom, and any other time I sweat or feel a bit ehh.
I also spray on my underboob area and that seems to be improving as well.
Upon spraying my itching relieves and I also get a little bit of pain relief. Some wounds are starting to heal and excited to see if I continue if there will be a reduction of flares. I would definitely recommend. And may post an update in a month or 2.

Its easy its convenient and even if it only helped the itching I would keep using it.

It also is helping with odor control on my armpits as I often have to skip deodorant because of flares.

As someone who tried glycolic acid as well which is always mentioned here this element spray has got me feeling instantly better which makes it much easier to keep using. I only used the ordinary glycolic acid for about two weeks before sort of stopping.

Having something to spray on open flares has been great. Hope someone else tries and gets some relief during this hot summer ❤️

I’m insanely self conscious of wearing any tank top, swimsuit or a dress. My armpits are soooooo hideous. I can’t shave my armpits because it causes flares, so I have hairy armpits. I have dark armpits too! The scars.
I can’t win. I never ever wear anything that could potentially be seen.
Ugh I hate it so much.
What do you guys wear?!

This post is not meant to ostracize anyone by any means. I have noticed a lot of correlation of people who exercise often and stay in great shape mention that it helps keep their HS well controlled. I’m admittedly in very good shape, mid 30s have a low BMI, run and lift weights, but still struggle with occasional flares. Is there any other males out there in a similar boat?

Hey y'all. I have a pretty big hole in my groin, no idea when it ruptured or got there but, here we are. I could stick the tip of my pinky finger in it. It isn't painful necessarily but I'm worried about having this gaping hole on my body. How do you heal these?

hello everyone! i recently broke my ankle in a few spots and now have to use crutches to get around as i am not supposed to have any weight on the injured ankle :( my problem rn though is that the crutches sit right under my armpits and dig into my flares/scars!! my step mom was nice enlightenment to wrap gauze and tape around the tops to make it a little softer but i still get little jolts of pain when im trying to use the crutches and they hit a wound 😅 any advice? thank you for reading if you did!

I was on Humira for about a year without any side effects and it worked great for my HS. My skin was completely clear of my HS and I was so happy to finally have some relief. Unfortunately, I lost my job and my insurance and had to stop taking it, which means my HS came back. I was able to get on my boyfriend’s insurance after I lost my job, but they’ve refused to cover Humira. I’ve tried Cosentyx and Bimzelx, but both are giving me the same miserable side effects. I’m getting ulcers on my labia and in my mouth, as well as yeast infections and horrible acne literally everywhere on my body. The ulcers are super painful and make it hard for me to walk or eat. I’m not responding to Fluconazole, either. I don’t know what to do. I’m afraid of trying another biosimilar because of these issues. I feel like I’m just turning into a science experiment, especially since I’ve been told the ulcers are a very rare side effect. I’ve gone through 3rd parties to appeal the denial for Humira, and my insurance has said there’s a 0% chance of it getting approved. There’s also no bridge program for Humira. I’ve just been stuck in such a miserable cycle and I’m so frustrated.

Sorry all post surgery HS de roofing inquiries! I had to delete my video from both sides bikini de roofing because I told too many people and there’s not enough censored yet graphic imagery on here. I’ve been too busy living life like a free normal person and forgot the trauma lol. After 2 years the scars are better and not too noticeable unless I’m doing yoga in a bikini. The skin is still thin and gets a bit pinchy with underwear sometimes. The nerves were severed in the scar so after shaving around the scars and the new growth is itchy, it itches in the scars but the stubble is around the scars. Like ghost bikini stubble itch almost. It took 12 weeks straight up. Gross leaking of bandages grease stains on pants especially if it’s summer. It’s not painful but uncomfortable and you can imagine walking with bandages. It’s totally worth it tho! Take 3 months off or work from home. It’s so g dang worth it! Do it do it do it!!!! Find a specialist dermatologist with experience even if you have to travel or really communicate with your dermatologist if they want to do it. One side the specialist did and the other side was an intern going into specialty. Both sides great and done at same time so it’s all supervised by the specialist and the specialist tweaked the intern side at times. But the intern side is the side that the scar pinches a bit. I think it’s technique around the edges of the wound while de roofing.