It might not be the same for you but I discovered that white rice is a trigger for me. I’ve had Hs for years, since I was about 11, and as an Arab family, white rice was a staple dish. I had it almost everyday. I’m 21 now and decided to cut white rice out for fitness purpose. I’m focusing on weight loss and I found that white rice made me feel super bloated and it wasn’t really helping me meet nutrition goals. So, I cut it out about a month ago and my flare completely calmed down. There‘d be occasional spotting here and there but nothing too bad. Unfortunately I didn’t realise the connection between white rice and my hs until last night , and by than I had my first bowl of white rice in a while. Next morning my flare was bleeding heavily. I thought it was a starch thing but I don’t react to bread the same so idk this condition is weird asf

First post: https://www.reddit.com/r/Hidradenitis/s/rfC6GhErkS

Second post: https://www.reddit.com/r/Hidradenitis/s/g79Qnmmnvj

Hi folks, again. Just wanted to update those who saw my posts over the last 3 weeks.

I ended up having biopsies of my breast and lymph node and, unfortunately, it is cancer that has metastasized to my lymph node. It is invasive ductal carcinoma (IDC) which is the most common type of breast cancer and highly treatable (although if one more person tells me it’s great that I won’t die, I will throat punch them). There are still many unknowns until I meet with my oncology team in a few days (e.g. staging, the treatment plan, fertility issues). I’m feeling all the emotions.

One thing I can say for certain is that breast cancer is handled so much more carefully, more deliberately, with so much more compassion than HS. I know I have a long, complicated journey ahead of me, but there is this feeling of irony (?) that cancer isn’t going to kill me and I will be so well taken care of. And afterwards, it’s back to medical trauma and mismanagement. The kind of healthcare I have been receiving since the confirmation I have cancer is blowing my mind. So… there’s the silver lining, I guess.

🤍 Please get your lumps checked, ladies! 🤍

Do not listen the part of your mind that wonders if the lump will just go away, or thinks that it’s no big deal, or assumes it has to be HS. Trust me, it’s better to be safe than sorry. I’m SO, so grateful that my husband and I moved quickly on this despite being absolutely certain it was a fibroadenoma. We still treated it seriously and with urgency and I’m so glad we did. Time is of the essence.

I don’t think I will update here again because I am now entering cancer territory, not HS, but if any of you have experience with HS and breast cancer, would you DM me? I have some questions.

❤️‍🩹

I am a 20 year old woman and I barely realized january of this year that the bumps i get in my inner thigh/groin area since i was 15 are not normal. After looking at images of H.S. in the super early stages i’m 100% certain that’s what I have, but at the dermatologist today they said it looks like folliculitis within 30 seconds of looking. I feel like this was a misdiagnosis and i’m not too sure what to do.

I had my first laser hair removal appointment today. I'm going through insurance, and doing it at my dermatologist's office.

I was prepared for a lot of pain and heat, but honestly it was a solid 1/10 for me. I got a full Brazilian done. I'm stage 1-2, but I've had a stubborn spot that's been there since October. And it's really impacted my life, so I started trying to find some way to help my symptoms and this was one of the ideas my derm and Primary care had.

Anywhoo, if you normally would say you have a decent pain tolerance, it will be way more manageable than you think. I didn't even realize she had started until she was a couple rows in and then I asked lol. I thought she was modeling how fast it goes with air.

She used the candela gentlemax pro laser, it's apparently a combo between the alexandrite and a ND:yag.

Does anyone in the UK have any product recommendations? I notice that a lot of the creams/plasters are from the US and can’t be purchased here😭

Whenever I get flares, I stop working out. I’m afraid to irritate my already flared up skin or wear tight clothing or sweat too much. But I end up having to pause for 2-3 weeks at a time… gosh it’s such a big break in between. What do you guys do when you still want to exercise but you can’t do anything too high intensity?

i am so tired of having to cancel things that i have been extremely excited for. im dealing with such a painful flare up and i think im going to have to cancel a job interview that i was excited for and i think im going to have to cancel on a friend that i was excited to hang out with because i am in debilitating pain. i hate how it can randomly ramp up from uncomfortable pain to can’t move pain within the span on 12 hours and i never feel like i have enough notice. i feel like if i ask to cancel and reschedule then im going to wake up tomorrow with a draining flare up and i’ll be in significantly less pain and i’ll have cancelled for no reason. i hate that i can’t tell when it will start hurting less. i hate that if pain relief doesn’t work then there’s nothing to do other than wait. i hate this body so bad sometimes. i don’t get what i did to deserve this. i have been talking about hope excited i was for this job interview and this outing with my friend for a whole week now and it feels like the universe is purposefully punishing me the day before and i don’t know why. i wish i didn’t have to deal with this.

I know everyone is different but people who have gone into remission or have less frequent flare ups what did u do?

I am absolutely miserable and feel like I'm going to snap

Give me all the things u did. Painful detail.

And when you get a sore coming in what do u do immediately?

I have hibiclens and use rice in a sock to try to get them to open but man it's just so bad

TLDR- How do you help your HS. I'm miserable

I'm super confused. Anytime I've had a flare-up in the past, it was always the same routine of getting it to come to a head, having it pop and then dealing with the open wound. Usually, the pain would get worse with each day until finally it pops and I get relief. However, this time my boil flared up a lot, but is now starting to hurt less and come down a bit?

I was in remission for a good few months, a pair of tight jeans single-handedly caused a relapse lol.

What is everyone else’s experience with boils? Do yours pop and drain, or do they shrink and disappear? Is one better than the other?

This is my 2nd flare in 2 years so i am a newbie. This time was a cyst on my groin area the size of golf ball. Urgent care doc got it lanced 4 weeks ago. But since last 2 weeks the wound keeps closing and gets filled up with runny red fluid making a big painful bulge. i keep doing hot compress until the wound opens up and the runny red discharge comes out.

Urgent care doc said the wound needs to heal but to check with Dermatologist if i need cauterized. The dermatologist said it’s healing.

Any idea what’s happening and how can i make it heal faster?

I had mild hs for around 4 years now and this time when I got new flairs they are smelling bad 😭😭. What's happening.

I want better products to help with evening out my skin, layering and to help better cover my scent.

I use zinc infused powder underneath my arms, boobs and my groin. I also use witch hazel. To cleanse, I use antibacterial soap and an African net sponge to help keep bacteria at bay.

I am building a routine adding in Carpe products (their body deodorant products), Mandelic Acid bodywash for those very hot summer days, and hypochlorous acid spray.

Any other suggestions? (I’m a melanated girlie)

Hi all, I have suspected HS but it only affects the pubic area. I've got PCOS and I'm overweight and I know that HS can be a comorbidity in both. I've been to the doctors and they didn't have a single clue what I was talking about when I said I suspected it, but they checked it out, said it looks really painful and prescribed me Xemacort, which helps minimally but doesn't help prevent or actually get rid of a flare up. (and by this I mean, my doctors had no idea what HS even was)

I've been struggling with this since September. I'm unable to shave and as a result I feel like the hairs are irritating the abcesses even more and makes me feel a lot less good about myself and my appearance, but when I shave it makes the whole thing worse. I've been denied a referral to a dermatologist and in the UK, going private isn't a good financial option especially when I haven't even gotten a diagnosis to base these facts off of.

I was fighting for a diagnosis of PCOS for 5 years, I don't want to have to fight for another 5 years to get the help I need. I'm 21, I feel like absolute shit because of this. I can't have sex with my fiancé without it hurting, I'm worried that it's going to turn into an infection, I feel like I'm the ugliest person alive and I know no one who experiences the same issues that I can turn to.

I just want to be told for certain whether I do or don't have the condition so I can get treatment and get it under control.

Hi all, I’ve been trying to get prescribed Hidrawear in the UK but it’s absolutely going nowhere and I’m stuck going in circles, and there’s no way of self funding it here. I’ve legit been in tears for over an hour after being told my GP won’t/can’t do it and want dermatology to do it, who’ve already tried and it made them go back to GP. So I’m gonna assume it ain’t happening!

I’m really struggling at the moment with a wound on my armpit that’s been going on for 3 weeks now & still isn’t fully healed, which is odd for me. I’ve tried so many different adhesives that the doctors have given me plus what I’ve bought myself and nothings working, everything is destroying my skin. It’s red, peeling, bleeding and so so painful where the adhesive is going, and also incredibly itchy. The stress of it is also causing a flare on my groin & tailbone, I know I’ll have to use an adhesive for those because of where they are but is there any way of dressing the armpit without adhesive? I’m so desperate at this point!

Thanks in advance

I was diagnosed with HS (stage 2-3) over 20 years ago. Tried everything at the time with no luck. I stumbled across a post about getting great results with Zinc. I started taking 100 mg dialy 20 years ago and the results are nothing short of amazing. nearly no sores for many years and if I did very minor. I had some unreated medical issues that prevented me from taking my daily dose for a couple of weeks recently and sure enough, sores came back. It was a bit delayed but man what clear sign Zinc really works. I am now back on 100mg/ day and things are clearing up. Do your own research, speak with your family Dr., and do your yearly blood work. Zinc totaly saved me on so many levels. Best of luck to all.

Hey yall need someone advice on what I should do. I’ve had HS since my early teens and im now 25. I haven’t had a huge flare up since 2019 and I’m currently experiencing a pretty big flare up in my inner thigh/ groin area. I went to see my derm and she wants to do an incision but it literally popped 2 hours after seeing her. I’m not sure I would want her to open it up after it popping as she said I may need stitches. Should i let it drain or should I still go get it opened. I’ve never had a flare get cut open the flare in 2019 was injected with a steroid

Hi all, short term lurker, long time sufferer here having dealt with flares for probably 15 years now. All generally contained to the inner thighs, I’d shuffled into urgent care many times for cysts before having one removed by wide excision last year. The biopsy didn’t show anything and I had a brief period of calm but flares returned and I sought out a dermatologist who diagnosed me as HS stage II.

Initial care consisted of Hibiclens and Clindamycin, but sure enough I flared again. I sent a message to the derm and got 100mg doxy twice daily for long term use. It helped the flares but killed my gut after a few weeks to the point I had to pause on taking it, which of course led to more flares popping up. I have my dermatology follow up next week and am most likely losing my job at the end of the month (yes, also next week). What rx or supplies should I try to get now vs waiting for either new insurance or medicaid? I want to receive more aggressive treatment but also can’t afford to do anything crazy at the moment. Any other suggestions or advice I can take into the doctor’s appointment?

My doc seems nice (and very confident) but he also just finished his residency and I’m not sure if he’s super experienced with our condition. Alternatively, there’s a specialty HS clinic like an hour from me that I’m considering. I’ve seen mixed reviews on the specialty clinics but curious if people had extra input or advice on that dilemma, too.

Thanks in advance!!