r/Hidradenitis

so basically as the summary says i think there’s a high possibility that i have hs.

since around age 12 i have had occasional boils in my left armpit, groin and inner thighs as well as occasionally on other parts of my body. my mum was sick and passed away when i was a teenager and it wasn’t an issue i felt i could talk to my dad about so it wasn’t low key just brushed aside by me and ignored.

as i’ve gotten older they have been slowly getting more frequent and i have some scars now on my inner thighs especially. i am now 26.

they do however look nowhere near as bad as any pictures or videos i see online. i also have PMOS and insulin resistance which i understand can also be another related factor.

i’m overweight and am trying really hard to get that under control because i know that can make things worse too. i’ve lost 6kg so far.

i’m in the uk and my gp does not care at all usually if i have a persistent boil i get dismissed as “it’s an ingrown hair or a cyst here’s some antibiotics” because my gp has never heard of hs and has googled it infront of me and decided my boils are not as bad as the pictures so therefore that’s not my problem.

as i understand it hs progresses in stages and i likely would place myself in stage one. my worry is without intervention it’s going to continue to progress and eventually will become as bad as some of the images and then finally maybe my gp will listen.

i don’t want to get to that point if i can avoid it though so what can i do for myself in the meantime to help.any suggestions would be appreciated

I’ve had HS for around 5 years since I was 14 in my groin area and it’s gotten pretty bad since i got diagnosed. It’s given me such bad anxiety and I’ve tried almost every medication every possible treatment and obviously nothing works but the ONLY combination that has worked the best for me is - Differen Acne Facial wash : 10% benzol peroxide face wash on affected areas once a day and HIBICLENS wash 2-3 times and then at night using clindamycin gel or silicone scar gel on dormant or non active flairs. ALSO staying active every day and keeping your hormones somewhat balanced has helped me keep my HS somewhat manageable. I would pay millions for a cure if I could. F*ck HS.

Anyone have any other things that have worked for you?? I’ll try anything else.

This boil is located on my groin. I popped it about weeks ago, then the hard thing got smaller the days after. Today it was swollen so I popped it again, idk if I drained it correctly but just tonight there is still more so I popped it again. Still the hard thing is not coming out...

I started eating healthier than I used to to lose weight (recommended by my neuro-ophthalmologist because I’m overweight and it could be affecting a brain condition I have) and feel better about myself, by cutting out gluten (my stomach was reacting to it more and more) not having any sugar unless it is naturally occurring like fruit, and little to no dairy. It’s been about two months and I’ve lost 4.7kg already.

Luckily while doing this, within a month my previous HS areas were less inflamed and no new areas were coming up?

For a colleagues going away there was a huge charcuterie board where I indulged in cheese and a dip that was dairy dominant. Within 24 hours one of my old HS scars was inflamed. I kept doing warm compressions and cutting out all dairy and it went down within a week. Cut to last weekend I went out for breakfast with my husband and afterwards shared a gluten-free muffin. I didn’t even think about the fact there was probably a lot of sugar in it and dairy. Within 24 hours I had another old spot become very inflamed and today it came to a head and bled.

I guess the evidence is piling up and I need to be gluten, dairy and sugar free, most likely for the rest of my life, unless I want old or new spots to become inflamed. 😭 It honestly could be worse and realistically, I don’t need the stuff that I’m cutting out because I’ve learnt what to substitute to keep certain vitamins from depleting. But it feels like an unfair disadvantage in a social aspect for when I want to go out for meals with family or friends.

Who knew mine could get better just through diet?

⚠️😫

Is there anyone else in NZ who suffers from HS but is undiagnosed. I have gone to the doctor several times previously and they are just so unhelpful. i learnt about hs via my own research after years of thinking its idk what.

Has anyone specifically in New Zealand - Auckland been able to find some type of doctor who actually wants to help with this?

Any at home remedies you guys swear by? My mom swears by salt baths but im not sure if they really help and im wondering if theres any other remedies! I get HS on my groin area and im a woman.

i've had a new, large, painful boil on my labia for about a month straight. i've tried just about everything i have access to that has worked for me in the past aside from I&D of course. i start grad school soon, i'm already disabled enough as it is, and i can't concentrate on anything. can't move around and do things or sit without feeling the pain shocks and itch. i feel like i'm genuinely sick and the fatigue is so bad.

things i've tried:
- been on cosentyx for several months now (it has weakened flares and put me in remission aside from this most recent flare)
- sitz baths with epsom salt
- warm/cold alternating compresses
- vicks/tiger balm
- two different drawing salves (magic healer and owell naturals)
- clindamycin wipes
- nizoral
- panoxyl wash
- remedy soap

i don't have hibiclens on hand and i cannot afford it rn, plus it's never really helped with active flares for me. only as a preventative. can't afford anything rn, i get paid monthly. i also feel like i will break out or get a secondary infection from using it on my genitals. but look at all the other bullshit i've put on it and i guess it doesn't matter so much.

at this point should i go to urgent care? this shit is making me suicidal--the emotional toll that it is taking on both myself and my partner, our sex life, my own sex life, i cannot take it anymore. it's right next to my clitoris so i can't even masturbate without being in pain. i already deal with chronic pain and mobility issues on the daily. what else can i do besides lancing it myself? (i won't.) it's embarrassing to go to urgent care for something like this. can't see my dermatologist for another month. if i gotta go through this for that much longer i probably will not be here anymore. so, what do i do? where do i go from here? i'm fucking tired, boss.

As if the pain, bleeding, infection, and scarring isn't enough, the itching is going to drive me up the wall! And since naturally these cysts/ tunnels show up in more private places, it can be difficult to get relief while out and about. I mostly rely on warm compresses and showers to relieve the itching. What does everybody else use?

POST UPDATE! Dermatologist said I need to stop them and he has now put me on (Minocycline)

THANK YOU FOR ALL YOUR COMMENTS! Thought I was alone in this <3

After waiting almost 7 months, I finally got to see my first dermatologist. He saw that I had a pretty severe set of flare-ups — 7 Stage 2–3 spots, all around my waistline.

He prescribed me 100mg of Doxycycline a day for the next 3 months. I've been taking it for 6 days now and holy shit... WTF are these side effects?!

• Horrible diarrhoea
• Nausea (it almost feels like a constant state of anxiety in my stomach)
• Complete loss of appetite

I'm going to call my dermatologist tomorrow and see if I can switch to a different medication, because there is absolutely no way I can deal with this for another 3 months.

Has anyone else had side effects this bad from Doxycycline? Did they eventually get better, or did you have to switch medications?

There’s a medicine trial in the works for moderate to severe HS in 12 locations around the United States. I’m not connected to the study just saw it when I was being nosy about what sort of clinical trials were happening in my area and thought folks might be interested.

Maybe it’ll help some people here & assist in developing better treatments

I am officially a week post op from my wife excisions on my arms. I was initially set to have both my arms heal by secondary intention but my surgeon said she was able to close them. She said that my tunnels, abscess cavities, and diseased tissue went way deeper than she had previously assumed. She said it went past my fatty tissues and even past my muscles down to the tissue sheet that protects my arteries and organs like my heart. I don’t know what would have happened if I didn’t get the surgery when I did but I’m glad she got it all out bc it probably would have been life threatening. The wound on my left arm was two inches deep which is insane.

Though she managed to suture the wound with dissolvable sutures, she said it would slowly open and heal by some secondary intention, but nothing like it would be if she hadn’t sutured it. Yesterday it started slowly opening but my surgeon team says it looks great so far.
The healing so far has been rough to be honest, especially the last two days. Since the wounds were so deep, the pain has been bad. The incision burns and the nerve pain radiating down my arm is pretty bad. I can’t lift anything 10 pounds or heavier and can’t move my arms past my shoulder height for six weeks. I’ve needed a lot of help from my parents and I’m glad I have my mom to help change bandages.
Getting in and out of bed is the hardest bc I can’t use my arms to push myself up so I’m just wiggling around in pain to get comfortable lol.

Although the healing sucks so far and is worse than I thought, I am glad I did the surgery. Even if my HS comes back at some point it is worth it because of how deep my hs spread. If I hadn’t gotten the surgery when I did then it would have tunneled through my last layer of protection and into my blood stream and it was class to my heart. I still can’t believe it went past my muscles!

I’ll post some pictures in the comments if my first day post op and my incision from this morning.

Knowing that this thing is genetic and can be passed down with the X sex chromosome has been one of the reasons I've been afraid of having a relationship that can bring a child. I've also been afraid that my siblings can pass it to their children, though they thankfully don't have any yet.

How about you?

Looking for advice on tips or things to avoid with irritated underarm cysts. I’ve been diagnosed with HS for years but this is the first time I’ve had a bad flare up specifically affecting my armpits (my groin is my problem area). I’ve never really had cysts there before and now I have 5 super painful ones. I’m already in a lot of pain and it’s affecting my mental health. I don’t know when I’m going to be able to get in to my dermatologist for medications. I’m paranoid that wearing deodorant or loose sleeved shirts is going to make it worse. I’m already doing panoxal twice a day but that’s it, I’d really appreciate any advice I can get.

Hallo loves

I (45F) had a full hysterectomy in October last year & since then my hidradenitis suppurativa has ramped up fantastically. It was pretty mild before & it’s been a decade since I last took doxycycline. I maybe had one or two on my buttocks.

I read it could be because of a decrease in oestrogen so I increased my HRT patch up to 75. I’ve just started taking 100mg zinc (with copper), vitamin b12 & vitamin d supplements in an attempt to get on top of it. However I found another one in my groin last night. I discovered one there a week ago (not same place) but I had no pain at all with it so was very surprised it was there. This new one is painful but only when I touch it. Feels huge, as they always do when you can see them. I do have sterile lancets for when I think it’s ready. I know I shouldn’t but the pressure is hideous.

Has anybody else experienced this with surgical menopause? How long should I give the supplements before I go to the doctors & ask for the big guns? Big guns being doxycycline again. Which I hate.

Oh I’ve had this since I was in high school but was misdiagnosed & only got the hidradenitis suppurativa diagnosis when I expressed it could be related to some other health thing I have going on. Sneaky I know.

Thanks muchly ♡

For those who have a routine that works for you, what does your weekly shower routine consist of?

I have it all: hibiclens, gentle anti bacterial soap, tea tree soap, zinc shampoo, glycolic acid, desitin, hypochlorous spray, clindamycin wipes, salicylic acid lotion, etc etc.

I just feel like I’d be overwhelming my skin using all of these consistently. I know everyone is different so it’s trial and error for what works for me, I just don’t know where to start! Would love to understand what someone else’s routine consists of.

So I live in the country where we had extremely hard water. Installed a whole home water softener system, but it’s still affecting my HS. I live in an area that’s surrounded by limestone, and have always had issues with skin here.
I’ve noticed that when I go to the Caribbean, my skin is so happy.
Also, just went to the Rocky Mountains and my skin was clear within a week! Flares that have been open and oozing here for more than a year completely closed there within 5 days.
Now that I’m home they are open and oozing again. I’m convinced it’s some mineral or chemical in the water here that must be affecting it.

Has anyone gotten a filter for their shower and had it help them? Links would be great if you have one that works!

Has anybody had luck finding an HS specialist in the Central Florida area? I want to get a second opinion as currently my treatment option is doxycycline for flares and a corticosteroid shot. I’m hoping to find someone who can possibly help support me a little bit more than antibiotics. Don’t get me wrong. I’m still using that treatment but I’m afraid of it not working after enough flares

edit: looking between Oviedo and St. Cloud ideally