I have been suffering with HS for 9 years now and it seems like it is getting worse. I am considering the surgery, but was wondering what are some symptoms you all have from it. I have it under my arms and I have also had them in my groin a few times as well. Do any of you feel tired and weak feeling when you have out breaks? If any of you have already had the surgery how long were you in the hospital and how was recovery. I want to help others anyway possible, so if you have questions please feel free to ask and I wll be posting as I have more experiences from this.
Hi there, just wondering; have you tried any treatments to control it?
Weight loss / antibiotics / dietary measures, etc?
Hello! I've never had the surgery, however I've heard that there is a 50/50 chance of it returning. I think it really depends on personal preference as to whether or not you want to go through the surgery. For me, someone who only gets major, debilitating flare ups once or twice a year (knock on wood), I'd rather just hope that it goes away rather than taking the 50/50 chance and possibly winding up having it return. If I had major flare ups more frequently I think I'd opt for the surgery, because at that point it's almost just what do you have to lose, you know? So if you're having them very often I'd say go for it. Also, to answer one of your questions, I don't think I find myself tired because of a flare-up, I think for me it's more of a depression that it causes, leading me to be unmotivated until I heal. Hope I was able to help, and if you wind up opting for the surgery make sure you update us on how it goes! Good luck!
Hi sorry you are going through this I have had HS since 2004 and boy has it been a long road. I have had surgery and the two I had removed knock on wood have not returned it was a day surgery. You do know it only temporary not a permanent thing I just have been lucky plus I have also list 55 pounds. I believe that has helped however I have had really bad flare up since January and nothing has really helped I have been using tanning bed that's helped a little but just started Humira as my other meds stopped working so I should notice a difference soon. I will keep you all posted. Godluck
I've had my HS for a few years now and it started out the worst in my armpits but I think I also have it in the groin area but it's nothing compared to how it is in my armpits. I did feel drained and very tired but I'm not sure if the HS was the cause or something else...I have other health issues on top of the HS so it's hard to pinpoint. It shouldn't be causing you to feel tired or drawn except the fact of maybe being drained due to being in pain or uncomfortable all the time. There's been times where I've wanted to have surgery or take it out myself I was so beside myself over it but that's because I go through spells where I just get that sick of it but right now I'm healing so I'm OK for right now. I have seen a conversation in this group where someone did have a surgery to remove HS from the armpits and the surgeon didn't take enough so it came back and now she has to get surgery again for removal but that doesn't mean that happens all the time. I'm sure everyone has had different experiences. As long as all the HS is removed along with some good flesh around it it shouldn't come back. I was told though that HS is genetic so I'm not a hundred percent sure if it won't move somewhere else...I'm not sure how my future is gonna be with the HS but I'd have to hear all the odds and outs about the surgery route before taking any step like that. Well good luck and wish you well.
I've also had HS without remission since even before I was diagnosed by my dermatologist so after a while it gets to be a lot to handle sometimes...
Symptoms wise I get the painful bumps and then they turn into holes and they drain. I hate to say it/admit it but there's also an odor that comes from the holes and I absolutely HATE it. Not trying to gross you out.
Yes, I do feel exhausted during outbreaks and my body aches. I have had one surgery which was a overnight stay in the hospital. I have also had several areas wicked. The surgery was in the groin area and it mostly burned. They cut a large section of skin away to make sure they got the tunnel. They were able to to close it without grafting. I have since healed without a scar there. I now have several other outbreak areas but that one is still clear. I have started using Manuka Honey bandages and it has been helping with the healing process one area is closing after 2 years.
Yes I am curgently trying to loose weight and I have tried several different medications and nothing seems to be working.
Thanks! I have them very frequently and it's becoming a nightmare. I have heard that it's a 50/50 chance, but the surgeon seems to think it will work well for me, so I am going for it and I will keep you all updated.
Okay thank you. It sounds like you just had them removed individually...I am going to have the glands removed which can be permanent if they get them all, even if it is not it should be a big improvement. I hope anyway, I will make sure I share my updates.
Thank you
Ur welcome 
Good luck with your surgery if you do it too
I always feel drained during a flare and end up having lots of nana naps on the couch in the afternoon. I intially throught that I was low in iron and took supplements. However, I stumbled across articles regarding "inflamation anemia" which is a a type of anemia where you body holds on to you iron stores as opposed to being low in iron. It apparentely is very common and is associated with cronic and inflamatory dieseases. I havn't really followed it up to see if HS fits in there, but it kind of makes sense. The take home message is iron supplements won't fix it. The following link will give you some info.
https://patient.info/doctor/anaemia-of-chronic-disease
Emis Moderator comment: I have replaced the given link with a link to the equivalent article on our site.
Thank a lot this helps.
Hi there. Whenever I get a bad cysts my immune system goes haywire and I always get a bad cold to go with it. If you're feeling tired and weak it could be because your immune system is waging a war on the infection in your armpits and groin or you could have a secondary infection like me.
I've never had surgery so I'm afraid I can't speak for that but I keep mind fairly well under control usually. From what I've seen of people discussing it online, people tend to prefer loose-fitting clothing, but I actually often find that thin, sweat-wicking workout clothing is the most comfortable because then you don't have chafing or sweaty areas of skin sticking to itself like your armpits. Especially when I have a cyst I like to wear a long sleeve running top to put some fabric over it and it makes it more comfortable for me. Working out is honestly the best thing that you can do for it, although it's difficult when you're in pain. Sweating unclogs your pores and stops them from getting infected. Even doing some planks would help, they get me pretty sweaty. I just want to keep mentioning this to people because it's something that doctors don't seem to tell you, but they do agree with me when I say it. Don't know why they don't tell people this when they are first diagnosed. I often have no cysts but when I stop working out I get tons all at once. I often get them at my groin because I wear jeans and work in a bar so I get pretty sweaty throughout the day, but then end up stuck in damp cotton clothing that is terrible for my pores.
Hi. That's funny you mentioned about taking naps on the couch cuz that was happening to me a lot. Like crazy. I couldn't stay awake to save my life. It was happening frequently and like if I was going through a spell and then it kinda stopped but I also drink soda that has caffeine so that I would stop doing that cuz I have a 2yr old to keep up with. I've had HS for a few years but I've never seen remission since even before I was diagnosed cuz I had HS before knowing I had it so I'm constantly dealing with it nonstop.
Random question here, but has anyone else been diagnosed with any thyroid problems? I have hypothyroidism and it causes real fatigue and feeling of constant tiredness when it's untreated. I remember seeing an article somewhere about there being research started looking at the connection between hypothyroidism causes and HS.
It only takes a simple blood test to check your thyroid for anyone worried about feeling fatigued. Not trying to freak anyone out haha. There is also a bit of an immune system battle involved with HS as it's an infection.
I've had HS for a few years not and I'm at stage 2 or 3 now. I do have a thyroid issue and I take medication for that to keep it under control and I had that for quite a while before even getting the HS so who knows...? There's never been a connection though between that and HS for me with my doctors. Ya, I'm totally like just wow when it's not under control cuz I wasn't myself for a while and I was just all over the place. Totally miserable. I had lab work and found out my medication for it had to be tweaked a bit and now I'm back to normal and feel way better.