r/Hidradenitis

There is a heatwave starting tomorrow where I live (London). I wish I could wear shorts, dresses skirts and t shirts but I’m too embarrassed and the heat makes everything worse. I’m 25 and the last time my skin saw the sun I was 12!! I also have eczema so I have dry dark patches of skin on top of my HS so it’s really annoying. I’m so embarrassed of being intimate with my bf but he says my skin issues don’t bother him. I wonder if they do and he just doesn’t want me to feel bad.

I use multiple products and wash twice a day but my skin looks horrible. All my bf does is use l’oreal 5 in 1 and occasionally go to the sauna and his skin is so soft and even! I realise some people just have life really easy. I don’t think I could ever walk in public showing my up arms or legs in my life.

Starting the AIP elimination diet tomorrow and I’m nervous. Has anyone done this for their HS? Would anyone be interested in updates every week or two? I will be on it for 90 days.

Any insight or opinions would be super appreciated.

Does anybody have a Deroofing success story?

okay, I’m just honestly, feel so happy and seen right now, I was watching a YouTube video and got an add for a medicine for HS!!! I just feel so happy! I have never, absolutely never heard anyone talk about this disease outside of this subreddit, and I saw a commercial, a commercial that someone could see and research and learn about this disease! I know this seems stupid but I just needed to get out my happiness, as someone who has so many scars on my thighs from the bumps, it just makes me feel more seen.

TW: Suicidal thoughts and ideations

I got denied disability today. I feel like shit. This isn't word for for word I'm just so upset. They said that basically I don't exhibit enough pain because I can still stand, walk and move around and think for myself so I can therefore complete a full day's work with breaks. They said that they understand that my pain might cause me some emotional distress but that I'm 23 and I can handle a workload. I'm stage three, my arms tear open when I try to move shit around, I have multiple openings active. My flare ups are so sporadic I can't track it and a place of work isn't going to understand that. And if I stain a uniform with blood and pus I doubt they will be understanding then. I can't afford my medicine. I feel like I'm going to live with my mom forever, and she doesn't want me here. Today is the most suicidal I've felt since I was first diagnosed 5 years ago.

I was just prescribed Simlandi for HS, which is a biologic interchangeable with Humira. I haven't taken it yet and have been psyching myself out over the possible side effects. I also smoke weed pretty regularly and worry I could get a lung infection or some other complication. I understand everyone reacts to medication and drugs differently, but I'm curious to hear about other people's experiences with smoking while on a biologic. Any side effects or complications linked to smoking?

Hello! 👋🏼 I’ve been lurking on the subreddit for years but am just now getting around to posting. I’ve had HS since I was 12 years old (I’m 28 now) under my arms and had surgery to remove it when I was 18. After using dove deodorant for a few weeks, the wounds have opened up and sometimes it flares a little, but nothing I can’t treat at home. Anyway, I’ve had a recent flare up in the bikini area and wanted to know if there were any remedies to treat the area because I don’t want to put Vicks down there lol.

Much appreciated, thank you 😊

Hi all, someone I love very much has been diagnosed with HS. They are still a stage 1 and really only have a few small bumps that look like in grown hairs. We know we are super lucky to have diagnosed this early. Looking around it seems like people have had some luck with laser treatments but most of the studies have been with stage 2. Has anyone tried laser on stage 1? I don't even know if anyone would do it but any input you all have would be appreciated.

Was diagnosed officially in January although I have had symptoms for about five years.

Last September had the worst flare of my life, so bad I was in tears every day and was bed / sofa bound and unable to wear any underwear for about two weeks.

I was put on Spiro in February, that same month had one single (but enormous) flare that ended up unexpectedly draining during the first week of my new job.

And since then ... nothing. Maybe a few tiny ones every other month.

My only regret is by the time I actually got to see a real dermatologist (it was a long wait on the NHS) I only had scars and pictures so show him because when my appointment rolled round I wasn't flaring at all. I really wanted to show how bad it could get to an actual dermatologist but only ever got to show dubious and doubtful GPs that would suggest STDs and eczema lol.

Hi everyone,

I've been on the mini pill for around a year and a half now. My symptoms started last September. I was given the mini pill when diagnosed with PCOS (of course, as it's always the first protocol for doctors to give you birth control for some reason)

I've heard that progestin can actually trigger testosterone related problems, and HS is related to that partially.

Is anyone else on the mini pill or has been on it? Have your symptoms improved or gotten worse since taking it or coming off of it? My symptoms started long after I started taking them so I can't make the comparison and would rather not go off the pill just to test the waters.

Any and all experiences and help is welcome! Thank you!

Summer is around the corner and so is bikini weather. How do you guys deal with pubic hair/bikini lines? Shaving irritates my pubic area way too much and causes even more severe flare ups. Has anyone tried waxing/sugar waxing at home? Does waxing irritate the same way shaving does?

Hi, looking for some advice please? I (36/F/UK) have suspected HS, all the signs and have been admitted into hospital a few times with out of control infections. I've just had a call from my Drs to say the dermatology team won't see me and have recommended to loose weight and see a dietician? (Story of my life...apparently if I weighed less my life would be amazing?!) I'm currently a UK size 16, having lost a lot of weight (over time) - previously been a size 24/26 and did not expereince HS. I am lost for words and direction right now. Can a specialists team refuse to see me in person and only go by my dr/hospital notes and a number on a scale? Has anyone been in this situation before?

I’ve (F28) had HS for the past decade(ish.) Never started going to the dermatologist until the last two years because I was early early stage 1 and thought it was just cystic acne.

My flares have been particularly bad the past few years, I’m probably stage 2. I’ve been on a double hormone BC for a year. I have pretty bad anxiety which has made it hard for me to try new medications (I’ve been sitting on doxycycline for 6 months.)

Found out that having migraines with aura + taking double hormone BC can increase your stroke risk and I freaked out. I haven’t been taking it for about two weeks…. Well now I’m having one of the worst flare ups I’ve had in a long time :( it never really went away but it’s been a long time since it’s been this painful. Should I just restart my BC? Was it dumb to stop?

As the title suggests, I’m really craving some. My Hs has solely been centered around diet.

Just curious and can't find much relevant info on this. I definitely have HS but never have inflammation shown in my bloods.

Just so tired of HS. Every little relief from this disease is temporary at best and nonexistent at worst.

Remicade was working so well but I'm also processing it faster than what my insurance will approve the doses for now. I also got surgery, but now its coming back, in the exact same spot. Can't even really try dieting rn cuz for that I'd need to budget a lot more money than what I make.

Aaaaah life is so complicated.

i swear if she would've gotten me treated faster this wouldn't have happened or be so bad my flare hurts so bad i can't lift my arm... how do i go the rest of my life like this

Reposting since i think i got the tag wrong as i speak a little of depression thoughts

Hi, I'm 19f I actually just found this subreddit today so I guess I just need to rant a little

I was diagnosed with HS only a year ago, and things are really mowing so fast, in the span of a year I: took 5 different antibiotics, had 3 different dermatologists, had 4 seasons of laser and one the most recent ones (around less then a week) a surgery on my left armpit, with the recovery being with a open wound and for last I will start taking Mounjaro which in my country is around 182€ per month.

Basically I'm tired and I really regret getting the surgery, the recovery is being awful and I'm starting to hate how my arm looks and the quantity of bandaids I have to use, which mixed with the fluids from the wound it causes a really bad smell, lots of itch and pain that I feel is worse then the HS itself, I will also put a photo of the wound here.

Onto the Mounjaro... I'm afraid, I heard testimonies that it works and others that only works for some time, which actually is not what im most afraid, it's the fact that I now have another expense, and a big one for a university student who already has big loans to pay, I'm also afraid since at this point I'm already taking 9

Different meds a day, for various reasons such as mental health, adhd and HS, and I'm tired of taking so much medication, especially the HS one since nothing seemed to work for me.

I know this isn't really structured but I needed to share my experience especially with the recovery being awful