Hidradenitis Suppurativa Support Group
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...
Few things -
Supplements - for me I take Tumeric capsules, Cayenne pepper capsules, zinc tablets, and sometimes Azo anti yeast pills, depending on what's up with my skin. I also try to drink like 6 cups loose leaf green tea a day for anti inflammatory properties. I think you can get it in pill form too but I am full up on pills and I don't want any more. I get it for cheap at Whole Foods, and I have a teacup from TeaForte.com with a little basket that sits in it that you put the tea in so you don't end up with tea in your teeth. It seems to be the least fussy way to do it. Plus water intake is super important. Water is good for your skin, helps it clean itself etc. I tend to drink a minimum of like 100 oz a day, but that counts all liquids. Water, tea, soup, etc etc. Water is in all of it. Doesn't really matter how you get it.
Body care - wash gently. Don't scrub or you'll create little scratches that can get infected and cause problems. Which means also unfortunately no shaving. I use one of those little bikini electric shavers to trim bit I don't run the blades across my skin. I keep it about a centimeter away. So I like to think I look French, lol! It helps my boyfriend is European. Currently I am using a product called Hibicleanse (spelling?), it's a sort of surgical wash and wound care. You can get it over the counter at drug stores. I usually only use it when I have one that is open and weeping.
Food - I'm a diabetic. So this may not apply to you but if you are diabetic or pre-diabetic try to avoid simple carbs like sugar, honey, bread, pasta, white rice, white potatoes etc. I find when my blood sugar is high or spiking up and down then I get more of them and they're worse.
After shower - this is a little weird but it is one of the things that I think helps the most. Moisture in these areas is BAD. For me I honestly think some of my outbreaks are related to little yeast infections on my skin from too much moisture. Like maybe I'm having an allergic reaction or something? Anyways here's what I do. I shower, wash, pat dry, don't rub! Be gentle. And I use a special towel. I use either a baby towel or a flour sack kitchen towel. Just for these areas. Something soft that I can use one time then throw in the washer with bleach to kill germs. Something that doesn't matter if I bleed on it. Then here's the weird part. If you have a ceiling fan in your bedroom turn it on high. Then lay on your bed with whatever part is broken out facing up to the ceiling fan. And read a book or play on your phone for a while. You want your skin to be dry to the touch and to give any open ones a chance to maybe scab over for the day. That's the hope anyways. Or you can use a blow dryer set on cool. But I'm lazy.
Clothes - wear cotton underwear. Preferably something you can bleach to get out stains and kill germs. Same goes for bras if you get them under your boobs. Ideally if you can find some where the elastic is wrapped in cotton fabric too then that's perfect. No synthetic stuff. Your skin needs to breathe. No tight clothes. Again it needs to breathe and air needs to be able to circulate to hopefully help dry any moisture throughout the day.
My outbreaks have never been bad enough or in places where I needed to bandage them. Armpits and loose clothes tend to keep anything from showing. And the groin area doesn't seem to leak to my pants. If I have a bad one I use an unscented pad and try to wrap it on my underwear so it'll be over the spot. You could also use the pads in your armpits if you're worried. However I have found them counterproductive because they don't let air circulate. They trap moisture against your warm skin.
Beyond that? If you're in pain you may need an antibiotic for a little while. Dermatologists usually try doxycycline first, but that has never worked for me. I have to ask for monocycline for mine. Not sure what the difference is. But other people have luck with other ones. I've never had luck with long courses of antibiotics. Usually just short ones if I have something unbearable. Clindamycin topical solution has also helped me in the past.
Research foods and supplements with anti-inflammatory properties. Like the Tumeric and the Green Tea. The cayenne pepper boosts the efficacy of the Tumeric for me. Also research foods that are thought to be inflammatory. Then try cutting them out one by one and see if you find your personal kryptonite. Everyone's body is different.
Pain killers? I usually take ibuprophen for everything. Idk if it helps with inflammation or not but it doesn't seem to make me any worse.
You can do this. You can get this under control and be comfortable in your own skin again. I usually walk around the house in a tank top and my underwear nowadays (air flow), and other than an increase in butt slapping from my boyfriend it's fine. When we were first together I had just finally gotten most of mine under some sort of control. The right guy will be with you and support you no matter what. Mine kissed my scars.
Hydrogen peroxide...yeah idk why but it doesn't let me heal. I've seen other people say the same thing. It keeps it from being red and hot, but it stays open and weeping for me.
And I wish I could tell you about deodorant, but unfortunately that's why I'm back on this site. For years Dove sensitive skin (the regular, not the clinical strength) worked fine for me and I had no outbreaks. But 2 weeks ago I bought a new bar and I broke out. Not sure if they changed the formula or if maybe my body just up and decided it didn't like it anymore. So I'm hunting for a new one.
And you mentioned weight loss? So I struggle with this, lose and gain the same 20 lbs over and over. BUT!!!! When i do cardiac exercise, and get my heartrate up for 30 min at a time like 4-5 days a week, it helps my skin. Even if I'm not losing weight. Not sure if it's a diabetes thing or if it has something to do with the increased circulation at skin level getting rid of excess body heat, or if it's the sweating? Idk. But it helps. Only thing is you HAVE to take a shower after, and do that whole drying thing. Otherwise sweating can make it worse.