Any advice please

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Hi. im 25 years old and ive been dealing with this since i was about 14 or 15. I never really knew what it was until recently, never knew it had a name or anything. When it first  showed up it was on my inner thighs. Just one here and there. When I was 20 they got pretty bad and i finally went to a dermatologist about it. Even then though, she had never given me a name for the issue. She had put me on a course of antibiotics for a couple weeks and this topical solution. It had worked pretty well. For a few years it was pretty good. Rarely got any, and when I did I used the topical stuff and it went away. Rarely had one that would open too. But now for the last like 6 months or so it seems to have flared up a whole bunch! Im going to make an appointment soon, but just wanted to know what else I can do.

So pretty much I get them like in every spot. Inner thighs, armpits, under my breasts, occasionally on my butt, and on my waist. It sucks and makes me feel so gross. I was self concious about them before, but not this much. Theyre just everywhere, and the scarring is terrible. I remember that my mom had them too, but I dont know how bad or how often. She passed away years ago, and I never got to really ask her about it. So I dont really have anyone to go to about it that understands.

Im at the point right now that I have like 4 of them that are open and just will NOT heal. Its just like a big hole in them that stays open and will leak and it stings soooo bad! I also have one in my armpit that shows up over and over again and right now is like slit open down the middle and wont close at all. Ive been keeping a bandaid on it most of the time cause how much it hurts when its uncovered. Im not even sure if thats good or bad to do. My left armpit is by far the worst area out of all of them.

Ive been reading a lot tonight and ive seen that i guess I shouldnt  be using deodorant, or shaving?? What am i suppose to use as an alternative?

I have another 2 that are open on my inner right thigh, and those have been making it hard to walk sometimes lately just cause how painful they can get.

I hope this isnt too much and sorry if it seems all over the place. Ive just never really talked to anyone about this before. My sister knows but she doesnt really help much since she doesnt know much about it. And my boyfriend knows, but I hate talking to him about it because it makes me feel gross.

So yea...any advice/help would be greatly appreciated. Im tired of being in pain!

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  • Posted

    U are not alone. I've had them all over the place and have had multiple surgeries on them. Both armpits, inner thighs, groin , buttocks. It's a very grueling disease. You should definitely go to a Doctor who knows about the disease and do your own bit of research . It is a disabling condition that only gets worse if u don't face it head on. The pain as well as the bad odor it admits gets very depressing. U have so many options but u have to

    Figure it out o n your own because most people don't know about it (including some doctors).lots of luck and don't give up. Happy Holidays

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    • Posted

      Thanks for the advice. I've been trying to read up on it and such. Hopefully I'll get it checked out soon.

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  • Posted

    Hi Panda! I would suggest making your appointment right away cause you don’t know how long it will I’ll take to get an appointment. I totally get it, I don’t like talking about this condition either. Only 2 people know I have it and they are always so concerned. As terrible as this is, I guess I’m lucky to only have it in the groin, left thigh and buttock.  Anyhoo, warm compresses help to bring it to a head. I do bleach baths every other day. I was on Humira for a year, it seemed to help in the beginning, but it only got worse. I’m also on spironolactone, metro gel and tri....just finished a boatload of antibiotics and still in pain, can barely walk. This disease is from the pit of hell! 😩. But somehow we must soldier on.   Get back to your doctor and see if they can help. Good luck!! 

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    • Posted

      I didn't even think about how it might take a bit to get an appointment. Darn. And I agree. This stuff is terrible! I hope yours gets better soon! I know how bad it can be.

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  • Posted

    Sorry your going threw this.my daughter has hs we went to a naturalist and she had vitam and minerals checked she was dairy intolerance and her magnesium was very low .since addressing these and following a paelo diet she is in remmision. I hope this helps .it seems to be very different for everyone.
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    • Posted

      I didn't think about vitamins. I've had blood work done and only thing I show up low in is iron. My iron levels are terrible. But it's been like a year since my last blood work. I'll ask my doctor about it. Thanks

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  • Posted

    I can relate to what you are going through and it sucks. I have been treating my sores with hiblicleanse idk if i spelled it correct but its that stuff the people clean themselves with before surgery its in a blue bottle. It workes pretty good. I have a bad open sore on my right armpit. I hate having this i cant shave or wear deodorant. I feel so gross. Im sceared to shave because i get them 100 times more.😳

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    • Posted

      Oh, where do you get that stuff? And yea I know what you mean. I didn't even know that shaving and deodorant made it worse till recently when I was looking stuff up about it.

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  • Posted

    Hey,

    I definitely feel your pain and I'm 25 as well. I had the exact same experience of getting them since I was 15 and not knowing what they were. My GP told me they were just lymph nodes at some point so I thought 'they're just lymph nodes' until one abscess grew to the size of a golf ball and I had to have surgery under general anaesthetic. Some dermatologists are great and some tell you very little, I've had both. I think it's important to look up the studies and treatment options yourself. I'm about to start Accutane, but if that doesn't work I'm gonna have to go for the big guns and use Rifampicin and Clindamycin which are antibiotics. They're a really intense treatment course to go with though and have some serious side effects, so I'm trying everything else first, but they are also the only treatment that I have found clinical studies for that have shown to put HS into remission. Something to discuss with your Derm.

    I get a lot that stick around open for a long time and won't go away. I recently started using Avene thermal spring water on my underarms since it supposedly helps sensitive skin and I now have a few that have been open for months that have closed up. I'm not entirely sure if it's due to the spray, but I'd love other people to test it out and see if it helps them too.

    Other than that the only thing that has made a big impact for me is exercise. I don't mean for weight loss or whatever, I just mean SWEATING. It's hard when you've got open wounds that are hurting, but it doesn't need to be running or anything with too much moving, it could be eccentric exercises like yoga that just make you sweat a lot, because it flushes out your pores to stop them from becoming clogged.

    I use bandaids on my cysts as well, the big ones for elbows and knees are good, the fabric kind. I'm sure that you're not supposed to, but it's more painful not using them at times and especially if it's an open wound it keeps it contained.

    I don't shave with a razor, but I use an electric beard trimmer to cut the hair short rather than shaving completely. It's not ideal, but it's better than shaving and causing ingrown hairs and introducing bacteria to your skin that causes more cysts. I'm now getting laser hair removal because I'm sick of the hair and the discomfort that both shaving and hair can cause with cysts.

    I use a spray mineral deodorant (I think it's called Bionsen) but it stings like a B when you have open cysts. You can use deodorant but not antiperspirant because that closes your pores and makes the HS a lot worse. Using an antimicrobial wash on the affected areas is really good for smell as well because it kills all the odour causing microbes (I have Dermol 500 on prescription).

    Seriously please try the thermal spray, I'd love to know if other people find it helpful and it's just a spray of water once a day so it couldn't be easier. I can't believe that the ones I've had for months have finally healed and I'm really thinking that it's the spray so if you've got the same issue, you could give it a try.

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    • Posted

      Wow thank you so much! That's all really helpful information! I'll try to find that stuff and let you know.

      I usually use bandaids on the one on my armpit that keeps coming back cause it just hurts way too much without it. And if I have a bad one on my leg that makes it hard to walk.

      When I went to a dermatologist that one time she gave me clindomyacin topical solution. It worked really well for me!

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    • Posted

      I think the combo is then clindamycin as a topical treatment and rifampicin orally and its the rifampicin that’s pretty aggressive and has lots of pretty intense side effects, but it isn’t meant to be the most effective drug treatment at the same time.

      I’m starting accutane in a month (you can’t drink much alcohol with it so I’m waiting until after the festive season, haha!) so I’ll maybe post an update how that goes. 

      The water spray is just something i randomly discovered but so far so good, so I’m interested if it really is the water or if it’s just me or maybe even something else that I’ve been doing.

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  • Posted

    Pain like no one can imagine feels like I am on fire ??. I have not been treated yet, I also have psoriasis and in between my thighs are straight on fire red with chaffing. I have about 8 spots on my waist and can’t sit for 10 minutes without being on massive fire. Can anyone in the world help cure this or put it in remission. Just now realized I have tracks in between my thighs as well and spots on waist have been there for years.

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  • Posted

    It's been a long time since you wrote. I hope things have gotten better for you.

    After 15yrs of suffering with HS, I got good respite with holistic treatment, by a homeopathic dr.

    Some people have benefited from the AIP diet.

    Try different approaches.

    Don't feel awkward or embarrassed about having HS. It's not your fault. Love yourself and listen to what your body is telling you. Take care. Wishing you wellness and health.

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  • Posted

    Hello Panda234, I'm 30 years old and I've had HS for at least 5 years now. At this point I'm not sure how much info you've received since your post and my HS goes through spells where sometimes it's just aggravated and sometimes it's there but calm. I already know now for the most part what bothers my HS. I don't know if you have figured out what bothers yours but my HS is in all the areas that you have yours except for my inner thighs. But, mine tend to end up always as open wounds (holes) and sometimes it takes a couple months to heal up. When they are open and bothering me I keep mine covered with a gauze pad and some sensitive skin tape, it really helps and it helps it heal quicker, at least for me. I do tend to still let it breath now and then but it'll be covered a good amount of the time. I have ugly scarring too, mainly in my armpits. As for deodorant, I don't use sticks really hardly to speak of. I ended up using the dry spray deodorant by Dove or any of those type cuz if your flare up hurts and is tender it doesn't feel that great to rub on some stick deoderant so I switched to spray. And, as for the shaving, I can't due to all my scarring in my armpits so I have a little, skinny grooming shaver tool or I also have the Flawless thing too and that's what I use. I got the Flawless thing at Wal-mart and the other thing you can get just about anywhere too, like Walmart. As for the HS, certain things irritate it. Like, all peppers (including seasonings), potato (except sweet potato), basically all the nightshades but tomatoes aren't too bad for me. Sometimes it doesn't have to be food that irritated it it can be hormones too along with stress. It's a complete nucense but that's why we're called HS warriors. It's a terrible disease. I found out I had HS when I went to the dermatologist about painful lumps in my armpit that my physician at the time didn't know what it was or what to do about it so she sent me to see the dermi and she knew the minute she looked at it. I was given antibiotics but they didn't work so I've never really seen remission since it showed up. I do however have my more clam moments than other times which lets me kind of gives me a break from the pain and discomfort. I also noticed that sometimes if I eat something that irritates my HS it makes me break out (acne) on my face and other random places. Which is beyond annoying. I also have other health problems too that doesn't help the situation either. I also take 4 capsules of turmeric daily, 2 in the am and 2 at night. It helps with the inflammation caused by the hs. It's what keeps my HS calm. But, anyways, I hope I was able to help you in some way or another. Good luck and take care. Keep your chin up, you may feel like your alone but your not. You have all of us right along side you. And, don't feel gross. Dealing with this disease is no easy task, it's what makes you stronger each and every passing day. You will always be beautiful, scars and all.

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