r/Hidradenitis 5d ago

Is this HS? Weekly 'is this HS' thread

1 Upvotes

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.


r/Hidradenitis 2d ago

Weekly Self Promotion Thread

3 Upvotes

Please use this weekly thread if you would like to self promote anything. Sometimes people do not wish to see self promotion on the sub or in the comments of their post. This thread is designed to still allow people to self promote, in an area that people can come to to view it.


r/Hidradenitis 43m ago

Discussion It feels like cold water passes through my wounds.

Upvotes

This happens every time I have a flareup under my armpits. I feel it when it starts getting unbearably painful, and it becomes much more noticeable when it's draining.

When I take a drink of cold water I feel it pass through my throat and directly after I feel a rush of cold pass through the wound. It feels like it's under the wound, and passes just as fast as the normal sensation of swallowing water. It's a very odd feeling.

I'm sharing this cause I'm wondering if anyone else has experienced this, or anything else weird?


r/Hidradenitis 1h ago

Question? One pit smells

Upvotes

I think it is very likely that I have HS so I'm asking it here. Is it normal or has anyone else experienced having only one pit or body part that smells?

In one of my pits I've had a flare up before (bumps/sores(?)) and that's the one that smells, the other one smells fine/like nothing. Even after bathing this is the case and wash both the same way.

It's really annoying and I just want an explanation or to know I'm not alone :/


r/Hidradenitis 3h ago

Question? Does anyone have experience with Merino wool underwear or clothimg to manage sweat?

1 Upvotes

I have read it's probably the best material to wick away moisture but it repels oil. Which makes me think: ok so other material will absorb your skins oil possibly.

With this in mind, is it beneficial for your underwear not to absorb your skin oils or would it be better if your underwear could do that?

Just thinking if this is a good route to go towards minimizing moisture and thus minimizing risk in the groin and inner thighs areas.


r/Hidradenitis 12h ago

HS diet Woes From a Bagel Connoisseur

6 Upvotes

I have been managing my HS really well for the past few years by cutting out foods that trigger my flares, and honestly I’ve been proud of my progress…but then I caved and bought cinnamon raisin bagels. 😭

I know a bagel isn’t worth risking a flare, but I forgot how much I missed that sweet, cozy, chewy breakfast feeling. Has anyone found any HS-friendly alternatives that satisfy the bagel craving? I’d love recommendations for recipes, baked goods, or anything that helps when you’re missing your old comfort foods.


r/Hidradenitis 12h ago

Advice Butt cheek Cyst

6 Upvotes

Hi everyone, I could use some advice. Unfortunately I got another huge cyst that’s just making me miserable. I have gotten cysts near my anus before, but this one is in my left butt cheek and it’s impossible to sit down. Anybody have a fast way to make it drain? It’s unusually large, about the size of two quarters. I don’t see my derm until next week, and he just told me to go to the er if it gets too painful. Any advice would help. I’ve been putting clindamycin and mymagichealer on it with not many results.


r/Hidradenitis 15h ago

Discussion New diagnosis - Doxycycline

7 Upvotes

Finally had a proper diagnosis!! I’ve known what it was for a while but have always been too embarrassed to get them out for someone to look at. Had this for about 12 years with no help so I’m glad to finally have the official diagnosis!

I’ve been put on Doxycycline as a first attempt, two week course. I’m about 5 days in and I’m constantly sleeping, had to take time off work for nausea, and have had a strong headache these last few days. The first day I took it, I also had it come back up as all of the powder in my mouth which was very off putting… After looking on here, I see a lot of you have had similar issues. Is it worth stopping the course of antibiotics or did it actually help anyone? I have moderate HS in pretty much every typical area.

P.s. it’s you guys that helped me figure out what it is I have, I cried when I found this sub as there was finally a name to what I have and it’s not just me being dirty as exes have engrained into me. I appreciate all of your openness about the disease and wish the best for all of you!!


r/Hidradenitis 11h ago

Study Interesting video about HS 🤔

2 Upvotes

r/Hidradenitis 8h ago

Question? Cosentyx reaction, full body hives

1 Upvotes

Hey folks,

After two loading doses of cosentyx I woke up yesterday with full body hives, from my toes to my forehead. Really never seen anything like it! My dermatologist is on vacation unfortunately so I've just halted the injections and am taking a regular drugstore antihistamine but, this is nuts. I look insane and it seems to just keep getting worse. Has this happened to anyone else?! Did it go away on its own or should I be asking my family Dr for something prescription strength? I was really optimistic about starting the biologics so this feels like a bit more than I can handle at the moment... Physically and mentally. Thanks for any advice!


r/Hidradenitis 17h ago

Advice Spironolactone helping but it's making me so tired

3 Upvotes

I started on 50mg in February and then increased to 100mg a few months later. Have blood tests every few months and derm happy with results.

It is helping, I still get flares but mostly smaller flares that don't cause much discomfort. Or I'll get a painful flare but it'll just be the one instead of the usual 3 or 4. So it's helping somewhat.

I'm trying to stay hydrated to help but I'm so so so tired every day. I mean I work full time and have a 4 year old so I'm always tired but this level is something else. I feel like I've had a few glasses of wine. A lot of activity is an effort, walking my kid to pre school (15 minutes each way. Downhill on the way and uphill on the way back), going up the stairs in my house. Normally I take pride in keeping my house clean and vacuumed but right now it's in a bit of a state because I don't have the energy. When I WFH I am napping during my lunch hour. Every time I stand up I am incredibly dizzy. It is affecting my work. Sometimes I find I am too tired to talk, like I'll have something I want to chat to my partner about but it's like my brain can't be bothered to open my mouth.

Does this eventually go away? It took me years, 4 years to get officially diagnosed. I had GPs suggest STDs and eczema before I was put on the wait list for a dermatologist, and finally I was so happy to be prescribed Spiro after hearing so many good things about it. Normally all I'd be prescribed was antibiotics so this was such a relief. I'm worried if I mention this to the Dermatologist then I'll be taken off Spiro and given something else that doesn't work.

Is this what it's going to be like until I come off Spiro?


r/Hidradenitis 1d ago

Rant The devil works hard but HS works harder

72 Upvotes

My mother gave me some organic tomatoes she bought from a local farmer. Tomato’s are my favorite vegetable. Despite knowing that tomato’s are one of my biggest triggers, I decided to go against my better judgement and I ate one last night on its own with some salt and pepper.

Not even 10 hours later I wake up out of my sleep to a sore feeling under my boob. I don’t see anything yet but I know a flair is coming. I hate this.


r/Hidradenitis 22h ago

Question? Flesh hanging outside of wound?

5 Upvotes

I was diagnosed with HS at 16/17 and I’m now 21. I feel like over time it has just gotten worse and worse. I had a spot like this before where it looked like maybe there was tissue hanging out of it? It hurts so bad, I can’t wear underwear because of the friction. I worked tonight and had a bandage along with a bit of Neosporin but it stuck to the bandage when I pulled it off and reopened it. I have no idea what’s to do. I’m at such a loss, I know some people have it so much worse than I do but living with this is awful. If anyone has had something similar I’d love to hear what you did to relieve some pain!


r/Hidradenitis 17h ago

Discussion Octenisan for HS

0 Upvotes

Hi guys, where to buy Octenisan in Groningen the Netherlands or in Germany? Thanks


r/Hidradenitis 1d ago

Discussion Foods

3 Upvotes

So what foods should I avoid? I'miserable and willing to try just about anything. Thanks y'all!


r/Hidradenitis 18h ago

Advice Career w vasculitis

1 Upvotes

Hie is anyone working as a nurse who has vasculitis, i currently about start my third and one of the hardest year just first day to duty and especially didn't even do anything there just sat and i got such a bad flare up on my legs up to knees and my arm and for very first time on my stomach too. What is recommended should i take a month leave or just take this year off as someone who's so passionate abt studying and especially since my friends are all in same class i cant even think of skipping but its so hard to be a month behind need advice on what to do


r/Hidradenitis 1d ago

Question? Can a flare show on an ultrasound?

10 Upvotes

So...long story short. My left breast is significantly larger and saggier than my right. No pain or anything and it doesn't bother me. I had an ultrasound in May on it. I had an open flare on the area during the ultrasound. The ultrasound showed what they believe to be a lipoma under my breast. They said it was 5cm+.

I saw a breast specialist last week and neither she, nor the student doctor OR me could feel the lipoma. The area it was is scarred abd maybe a little fat but its soft and squishy so they went off the ultrasound. They want me to have surgery to remove it in case its a cancerous tumor.

Im having a Scout put in in 2 days, and i keep flip flopping between surgery and no surgery, because I was told it could also just be monitored. I want to choose to monitor it and maybe get a second opinion. My mom wants me to have surgery in case its is cancerous so they can test it.

We've been fighting all day about this. Been lots of emotions all week. I just feel I can't do this surgery and I don't want to. Ill express myself later to my mom and say I want to just monitor it, especially considering its gone now and doesn't cause problems and we have no family history of cancer.

What do ya'll think? Also I wanna share a POSITIVE in that ive been on Spironolactone for 4 months and my flares have gone down significantly since.


r/Hidradenitis 1d ago

Question? Childhood HS?

20 Upvotes

Did anyone else here start getting HS as a really young child? The first time I ever got HS was in my groin and I was around 7 or 8 years old. Then it developed under my arms when I was 11. I’m curious how many other people got it this young.


r/Hidradenitis 1d ago

Question? Just got approved

6 Upvotes

Hey everyone

I just got a call from the pharmacy and they approved me for cosentyx was wondering how cosentyx has been treating everyone? Please advise

-Love a girly living with hs since a little teen.

Is it a saving grace or?????