Hidradenitis

Please use this thread for all your 'is this HS' related questions. In order to post your images you will need to submit a link to them. In order to do this, you can upload your images to imgur.com (there is a mobile app available). You will have the option to upload your images as 'hidden' so that no one can see them without the link. Once you have uploaded the image, select 'copy permalink' and post that link into your Reddit post.

Disclaimer: I know some/many of you have found relief using antibiotics and I’m not here to tell you to stop what works for you! I have seen so many comments and posts sharing the variety of oral antibiotics everyone is on and I strongly feel the need to share my experience for a broader perspective.

———

I (31f) was diagnosed with HS by my GP last year. She is a great doctor and I am very lucky she had a wider understanding of HS than most GPs. I had a really uncomfortable flare up on my nether region and it was getting infected. She prescribed doxycycline and it helped the flare up calm down.

In just last year, I also dealt with my first ever UTI (needed two full courses of two different antibiotics to knock it out), two different skin staph infections (2 more courses of doxy), and a really bad stress breakout (another course of doxy plus a steroid).

The really bad stress breakout turned into a raging case of fungal acne/malassezia folliculitis. The antibiotics wiped out ALL bacteria which allowed the (naturally occurring) yeast on my skin to take over. This happened despite taking probiotics while taking antibiotics.

In February I was diagnosed with prediabetes. I cannot tell you not just the shock I felt, but everyone else who knows me too. “You’re like the healthiest person I know!” As it turns out, antibiotic usage is ALSO linked to an increase in diabetes risk.

Broad-spectrum antibiotics are not as safe as they seem. It can take up to 6 months for your gut to recover from just doxycycline! With more and more research and evidence pointing out important links between gut health and immune/mental/heart/overall physical health, it’s crucial to understand what broad-spectrum antibiotics do to us.

Please proceed with caution!

So I was diagnosed with HS about a year ago, but I’ve been having flares and whatnot since about 2016 or 17. I am a male and I’ve been having spots flare up on my butt, inner thighs and now recently a slot has shown up on my private region. I already wear loose fitting boxers, take doxycycline twice daily, use clindimycen.

Also me being a stupid and uneducated, I popped most of my flares because I thought it was just normal acne happening in an unfortunate area, until I was officially diagnosed with HS, then I stopped all popping.

Is there anything else I can do to reduce the frequency of my flares or flat out get rid of the scars caused by my ignorance. Thank you for your help and time.

Love this subreddit since this is the only place I can share this but I woke up this morning and saw pus !!! Never been so excited in my life. Have had a flare up in my armpit for close to a week that hasn't changed except for becoming more and more painful. I've taken a lot of advice from the subreddit and this morning it's finally draining. I've been bedridden all weekend and I'm just so grateful to have a light at the end of the tunnel.

That's it lol it's gross but I'm so happy

If you're in a similar position, Epsom salt baths (consistently) and Manuka Honey Ointment seemed to work the best for me with this flare up. My HS is hormonal and not dietary, but attempting to keep my stress levels down seems to have helped as well.

Please give me some tips. Where should I buy medical supplies for dressing my wounds?? How should I dress them? It hurts to walk because they're on my pubic area, and they seem to always be right in a spot where it rubs when I walk. I've been very active recently and am finding the pain to be discouraging... the scarring is very frustrating and I feel like I'm just made of scars in that area.

I have not been diagnosed with this disease. However, 2 gynecologists have suggested looking into it but are baffled. I have recurring cysts that pop up right around “that time of the month”, and they always seem to be in the same exact spot, which on my right labia minora. They swell up to the size of a pea or even a grape, to the point it hurts to walk, sit, etc. After sitting in a few sitz baths, they rupture and drain, and then I’m good until the following month. For the most part, I get one or two, but I’ve had 4-6 at a time as well, all over my privates—my clit, labia minora, majora, etc. They itch super bad sometimes, also. I’ve been put on spironolactone and doxycycline hyclate monhydrate. The doxy seems to help. I’ve just finished my first month on spironolactone, and while my acne has completely vanished, the cysts still persevered this month like clock work. I don’t get these cysts anywhere else on my body. When I was a teen, I’d get one around my period, once in a blue moon. As I’ve gotten older, they’ve become more frequent. My mom and I are close and she said she’d get them too. I don’t get any of the “tunneling” or scarring that I’ve read in some of the posts up here. I’d also like to add that I’ve been tested and swabbed for HSV and I tested negative.

How do I go about getting tested for hidradenitis suppurativa? Do the cysts ever go away for good? And does anyone else get them on their lady bits like me? I was under the impression that HS occurs in areas where you sweat often or have hair. I don’t have hair in that area and I also don’t sweat there.

Thanks in advance!

So over the last year and a half, I have been working diligently on getting my flare ups under control. Starting with seeing a PCP to get a diagnosis(knew what it was, just wanted treatment), to stepping it up to a dermatologist to help with said treatment. Started dieting to lose weight, lost 50+lbs since middle of October. Changed my eating habits, cut out most dairy(cheese is my downfall, but I limit it), cut out sugars(unless natural), watching my carb intake(kinda keto). I still flare, bc stress and hormones are triggers for me, I still get a monthly cycle and I stress over almost everything, even though I've been trying to work on ways to destress as well. I went out of town for 3 days and strayed from my diet, ate carbs, dairy and sugars, and fried foods, and fast food. That was a big mistake. I had a golf ball size abcess in my left armpit before I got home. Could barely move Saturday, even though I had to go to work, I dont have the option of calling in. It has released thankfully. Didn't really realize til this trip that food really affected my flares. Now I'm looking into more inflammatory foods that I maybe eating and not realizing, just to see if I can reduce and minimize the flares that I do have. I also started my cosentyx yesterday, so im excited to see how that goes.

First time poster, forgive if this has already been discussed….. Does anyone else dread summertime because of the flair ups it causes? I’ve dealt with this on and off for 30 years and always dread summertime because that’s when it gets worse for me. I was doing great for about a year+ but got out, wearing jeans the other day and suddenly I got another flair up in my groin area, usually in the crease between my leg and private area. I’m in so much pain. Usually when I feel something coming on, I immediately get out my equate triple antibiotic cream and pile it on the main spot but this one is unusually unbearable!! I can’t even wear underwear right now! Any help, suggestions, advice?

Hi all! I ended up in the ER with an 11cm infected abscess next to my rectum - lucky me! It also caused a fistula. I’m going to be discharged in the next couple days. I’ve never had a surgery this extensive done on my HS, only deroofing. And also never had surgery so close to my butt. There’s about 24 inches of gauze packed into my tuckus right now.

Any advice, product recommendations, etc would be greatly appreciated! Just want to ensure I’m has prepared as possible for when I go home. Thank you!!!

I’ve read on some posts that red light therapy can help. What does it help with? Can it help close open wounds? I’m interested to hear some of y’all’s experiences if any of y’all have tried it.

I’ve never posted on here before but I’ve silently followed the last few months and feel this is the only space people can actually relate when talking about the ways HS really affects your entire life. So anyways I just want to complain lol. I took my son to Disneyland this weekend and had to come home early this morning because of a cyst that has been coming the last few days. I knew last night that I was not going to make it another day bc of how bad it was starting to hurt. I’ve just been putting clindamycin on consistently but no luck yet… I get them in my groin area 😞 so I’ve just limping around the house, taking ibuprofen around the clock and soaking in the tub when I can. My son is sick now of course and needs extra attention and care right now (he’s 18 months) and I still have to be a mom despite I’m in so pain every movement I make. I just hate it here. & why is it you get a flare up every time you have something important going on?!? We had tickets for Friday to Sunday, I started feeling this coming Thursday. After being completely free or any flares for a few months.. It never fails, whenever I have something important or something I have to do a lot of walking I’ll get a cyst.

disclaimer I’m just ranting so please don’t flag this for SH or SI content, I’m chillin lol.

Can we start a dating page on here for people with HS or something? I literally don’t know what else to do but I also don’t think I need to explain this feeling to anyone on here. I’m sure you’ll all understand, and especially those of you who, like me, suffer with really bad HS. What the hell do I do as a young woman entering their mid-late 20s now? I was with one partner for my entire adult life who also had HS. Mine went from being mild/moderate to getting progressively worse & worse while his stayed about the same. We’ve been broken up for some time now - don’t want to give too much identifying information - but he has a new relationship now and I’m sincerely struggling to cope with this. I’ve been distraught thinking about the fact that we might never reconnect in the future if things get serious with them and that now I’ll either be alone, or I’ll have to show this side of me to someone new. Frankly I don’t know which option is more terrifying.

I know some of you on here are super confident and don’t mind being intimate with people despite having HS, but I just do not have that in me. I physically cannot bring myself to try and date anyone else because I don’t want anyone else to know my body. I know good guys exist but I don’t care how good of a person someone is - no one who didn’t have this disease would look at my body and think I was sexy anymore or want to sleep with me. Doesn’t matter if I had the worlds best personality, prettiest face, or bangin body. Doesn’t matter if I had all the money in the world. Having these boils all over your most intimate areas is gross. They hurt and they smell, they just aren’t fking cute and keep getting worse. I hate my own body and wish I was somebody else every single day, so why the hell would anyone else love that if I don’t even feel that way about myself? I can’t even sit here and say that I wouldn’t hate if the roles were reversed. I’d understand if people hated me and rejected me because if I’m being so real I’d probably run for the hills too if I didn’t have HS and met someone who did. I fkin hate myself because of this disease.

I’m not perfect and definitely have my issues, but know I’m a good person who deserves love and to have a family, so it sucks. Just being a good person unfortunately doesn’t cut it these days, if it arguably ever did. It especially isn’t gonna cut it with something like HS, and that’s worse if the other person doesn’t also have it. I just feel like I would be on top of the world if I didn’t have this disease and it’s slowly rotting me from the inside out having to pretend like I am a normal person every day when I am in agony every second. I’ve been robbed of my youth and of experiences. I know I’m not a 10/10, but I’m objectively pretty f-ing cute and am for the most part content with the way I look too, apart from what’s hidden underneath my clothes. Might not have been valedictorian, but I’m highly educated and just finished my graduate/doctorate program. I’m just entering my career, am going to be making good money, and will have stability in my life in many ways other than just financially. I have a roof over my head and I still have most of my family around. I have pets and so many amazing friends who care about me around me, so I really have so much to be thankful for. It’s all overshadowed by this monster of a disease. This should be the most exciting time of my life and it’s been robbed from me entierly.

I DEEPLY feel for each and every one of you on here who might relate to what I’m saying even a little. I’m so sorry. 💔

Ok but this disease is the worst bc it hurts so bad to sit on hard surfaces like the toilet when I have a breakout right on my sits bone area 😭😭 like yes I totally needed my diarrhea to be worse tonight. anyways I’ll soon be trying some new products I’ve seen on here lately. Dr Bronners soap and the glycolic acid spray. I Also just started wegovy. I’ve had this disease since I was 14 and I’m too damn old to keep living like this (I’m only 26 lol)

Who else wants to rant tonight? I’m here to listen

Edit to add: happy pride month to the gays with HS and the gays with HS only

Self diagnosed HS warrior… do yall ever get fevers and other body aches with flare ups? Also last night the warm compress made the lesion/boil bigger 😭

Hey everyone, a few rule changes.

From now on, there will be a weekly thread for posts that contain triggering material (I'm talking mainly about SH and suicidal ideation). It should come up in the next hour or so, and will repeat every Sunday. Please use this thread for any posts mentioning such content.

If you post such content not in that thread, it will be removed by the moderators. There is a new rule listed stating this.

When we remove such posts, the removal reason will now include a list of helpful mental health subs as well as a link to a list of suicide hotlines and emergency services phone numbers for most countries.

If you see a post or comment not in the allocated thread, please report it, we will remove it. If it is in the thread, please don't report it, don't click on it if you wish not to see it (it will be a NSFW post also).

Any questions or suggestions, please comment.

Hello, hope your doing well i just want to know how and when to use the glycolic acid because after the shower i usually apply my antibiotic. What so y’all recommend?

The ordinary 7%

Anyone in the NYC area have any luck finding a solid doctor that knows what they're doing and talking about???

Almost every doctor I've met and dealt with has treated me poorly in some way. Leaving me unhelped and feeling ashamed.

Any doctor recommendations are welcomed. Especially ones that do draining. I have a flare on my chest that makes breathing painful 😞

I wanted to know if it would ultimately spread regardless what we do ? Is there anyone whose didn't spread ?

I was wondering what everyone’s routine is outside of flare ups?

My HS was really bad when I was 14-19. I’m now 28. In recent years I haven’t had many bad flare ups as I’ve found certain foods trigger them such as dairy so I’ve limited them or cut them out. However lately I tend to get small to medium size lumps in my groin, thigh and bum area around my time of the month and in the summer when I sweat. I was wondering if there was any specific cleaners/soaps/body washes or skin products you use long term to try and limit the flare ups?

After struggling with HS for several years (stage 1) in the groin area, I was finally diagnosed this year. A few months ago, I had a recurring boil removed that wouldn't heal and had been flaring and going down for over a month. After following this sub for a few months, I started using Dr Bronner peppermint soap in the shower and glycolic acid afterward. I had one active flare that went down completely using this regimen and I have had no other issues since I started this routine about 1 month.

I am looking into laser hair removal as others suggested. Stay strong everyone

Idk if other people get bad flare ups when they get colds but I'm recovering from one and flaring up bad.

Met someone before my cold, put off the first date, finally got to meet them, and I really like them. But my body is making me wait on anything else because I've gotta have stupid HS 🙃

My huge problem areas with HS are my armpits. I’ve had an open would that I’ve been covering and monitoring for almost a year now. It just keeps getting bigger and still drains yellow pus. I’ve been on several rounds of antibiotics, saw the derm about a month ago where I was finally diagnosed with HS. They didn’t really address the open wound situation but now I have two additional open holes from flares that opened and drained a bit before my derm appointment along with one they drained at the appointment. All of them are small open holes now and I just don’t really know what to do.

I’ve tried bacitracin ointment, saline solution, triple antibiotics, anti bacterial dial soap, hibiclens, everything. I just really need something that’ll start healing them and closing the wounds. So I can give my wallet a break on all the gauze I’m buying. Any wound care tips are also greatly appreciated.

I’m going to try laser hair removal on my pubic area but my doctor says I need to fully shave and I’m kind of freaked out that my going to irritate the skin and cause more problems.

I bought an electric body hair trimmer but I don’t know if that’s better or worse irritation wise.

Does anyone who’s done laser have any tips on how to do this? I’m female fyi. Thank you

Im a male in my 20’s and am kinda overwhelmed right now. Not only do i deal with HS in my groin/thigh area but I am trying to manage my bipolar disorder and I have to use a cpap machine when I go to sleep. I feel like thats the holy trinity of unattractive health issues that is going to make it impossible to date and im very self conscious about all of this stuff

Idk what the answer is but I just needed a place to rant real quick and get it off my chest