Does anyone suffer from hidradenitis supperativa?

Does anyone else suffer from hidradenitis supperativa? I have to use a topical chlorhexidine wash on my privates, underarms, and legs. I can’t shave, wax, or use hair removal cream; otherwise I end up with cysts that need to be surgically drained and removed. How do you handle it? I feel really self-conscious wearing shorts and no sleeves because of all the hair. Is there anything I can do? My husband has no issues with my body hair

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Have you tried any antibiotics from your doctors at all?

Clarithromycin is what my doctors prescribe me when I get a flare as bad as yours! It usually takes 2-3 weeks to clear but I was also given the option to go on a 3 month course of antibiotics if they didn’t help or the flare up continued. I never found the body wash to actually do anything.

It may be worth speaking to your doctors about antibiotics because it surprisingly eases the pain a considerable amount within the first few days. Obviously having them surgically drained all the time isn’t the best but I’ve always found antibiotics help massively which has helped me avoid that situation.

Help a mama out and respond anonymously on our forum. Does anyone suffer from hidradenitis supperativa?

No tight clothes, including undies. Cut sugar and dairy from your diet (probably gluten too tbh). A paste of colloidal silver gel and turmeric on breakouts.

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If you have insurance, there are quite a few medications specifically targeted to treat HS. You should see a Dermatologist and speak with them about injectable and oral medications that could help you.

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Go Vegan, watch Tabitha BROWN SHES VERY INFORMATIVE

I do, but it’s not to a point where they need to be surgically removed, the worst ones were on my breast and I was given pills to help before they would try surgically removing them, it helped a lot but I also can’t shave or use deodorant, I have been able to shave my legs and arms though but not my armpits or private area

I’ve heard laser hair removal!

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There is a great support group here on Facebook. I don’t shave, I use an electric razor. No underwear or jeans. Im on the depo shot and it helps alot with my flare ups. My bad ones end up turning into cellulitis.

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Maybe laser hair removal or Botox

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I do not, but I wanted to say that I rarely shave my legs or underarms. I wear shorts and tanks all the time. No one has ever said anything to me about it. I would feel sorry for someone who has nothing better to do than worry about someone’s else’s natural body hair. Passing some confidence to you :heart:

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There are HS groups
Hidradenitis Suppurativa Unique Fun Facts - HSconnect Global Support Group

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I do, quite severe actually. My dermatologist whom specializes in H.S recommended laser hair removal, it worked well.

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I have it as well
Not a fan
Do not recommend
Zero stars :expressionless:

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I have a similar skin condition where I constantly have cysts under my breasts, my undie lining on my legs, my armpits and boy oh boy does the inner thigh cop it too …

I find I can’t shave at all without having a flare up and needing them drained …

I can’t wear wire bras or underwear at all …

Constantly tweezer my hairs and squeeze them almost every day just so I feel comfortable…

I have no advice besides your still beautiful and these things suck balls :pleading_face:

Yes, I’m stage 1 (thankfully). Join the fb groups they’re soooo helpful and understand

LilliRose Farnell Wanda Lee

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I have them under my arms but they’re dormant now, I did get an rx for humira though which helped

Keep a food journal and dump all nightshades. That’s been the only thing that has helped. I cannot have tomatoes or potatoes have to cut the dairy down as well as my soda habit. Otherwise mine is based on hormones.

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I had to go a biologic medication Humira and it works so much. I don’t have any flares.

I do/have since I was a teenager but it’s alot better in more recent years. I have alot of scarring in my armpits and a few scars along my bikini line. It was alot worse in my teens & 20s but more under control now. I NEVER use any body products with oil or moisturizer and wash with plain soap and antibacterial wash everyday specifically on areas when I shave. There was a period of my life where I couldn’t shave and did laser hair removal and deoderant is trial and error to find one that doesn’t irritate or clog pores. I hit he slightest ingrown hair with antibiotics regardless of how small it is. Tight underwear, underwires that rub against the skin are a no go. I have an autoimmune thyroid as well so keeping that well controlled helps as I noticed my hormones being out of balance makes the cysts worse. Smoking cigarettes can also make it worse.

I have it too!

Thankfully my last flare up was a few months ago.

The pain was excruciating :slightly_frowning_face:

Hidradenitis Suppurativa Support Group
Hidradenitis Suppurativa Warriors
HS Support Group - Hidradenitis Suppurativa (Pics allowed)

These may help :purple_heart:

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I literally never thought I’d find so many people like me🥲❤
I get flare ups so frequently, cause by stress but I cannot get my stress down. I’m so scared to end up like Google shows… which of course adds to the stress.

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Hugs too, and if anyone ever wants to talk, I’m here. and we host a yearly walk for HS awareness! Michaela, I can send you our information too. I dont to sign up it’s all free. I can send you a T-shirt from this year’s walk. LilliRose Farnell connect with Michaela Kohnen. :slight_smile:

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Use makeup? Or bleach the hair?

I’ve had a major surgery in my groin, both sides, to have all glands removed. It was a 50/50 chance of being successful; it was pretty successful. I’m now on doxycycline daily and it controls major outbreaks. The issue is now believed to be autoimmune, so avoiding inflammatory foods, activities, etc. are helpful, but treatment with Humera has been successful for most of those treated according to my dermatologist. I only have it in my groin, so finding hair removal that didn’t cause flare ups requiring excision was a lifelong battle. I’m able to wax and epilate, thankfully. A topical ointment of clyndamiacin is helpful as well. Ultimately, permanent hair removal (laser) or ongoing Botox treatment should be the most successful.

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Idk what this is, but are you able to use a gentle electric trimmer/shaver? There’s a pretty inexpensive model by Clio that leaves no knicks and doesn’t pull. If this isn’t helpful, I’m sorry and I hope you get advice that helps.

Can you use hair clippers like what the barber uses?Sometimes when I being cheap and don’t wanna pay for a Brazilian I use my husbands clippers lol but it works great. Hope this helps :heart:

Try eating fresh yeast the one used for making bread

Yes . Since I was 8

Maybe you can try Nair Hair removal?

I use an electric razor and spray on deodorant

Thats what that is?? I keep getting cysts on my thigh,crotch gap…with or within a inch of where id grow hair…

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I get it as well as all the women in my close family. We’ve not really found a way to help it , they come and go every so often but so painful sometimes

Can you just cut the hair very close and not all the way to the skin?

I also suffer from it. Topical Clindamycin and oral doxycycline help. Its definitely not fun. I get them all over.

Have never heard of that…sorry you have it

Ive had it for 11 years!
Thankfully not bad enough to have needed surgery, but still excruciatingly painful. If you type it into search on fb there are quite a few support groups.
Only 1 Australian one that I’ve found.
Unfortunately, its not a 1 thing helps all, many different things help many different people. There’s also many people who have gone through trial and error and still haven’t found anything that helps.
Mine is hormonal.
Support groups are good, so we know we aren’t alone after secretly struggling for so many years.
Message me if you need a chat, i understand completely. Sorry i have no answers or help for you. Xx

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I control mine with diet. Mines hereditary. I’ve gone through years of excluding items from my diet and have narrowed it down. Haven’t had one of my massive flares for nearly 5 years now.

Go to a dermatologist i suffer with it also im on humira

Tamara Anne Wittstock

I’m seriously considering laser hair removal on my underarms now from it. :grimacing:

Hi! I’ve had HS for over 20 years and I’m an admin for an international HS group.
My recommendation for the hair is to opt for sugaring, it’s similar to waxing but not as damaging as it does not strip layers of the skin.

Use baby oil, aloe, or conditioner to shave if that’s what your wanting. And DONT push the razor hard into your skin that’s what I use to do to “make sure I got everything” but I’d just give myself razor burn. Take it slow, gentle, and you should be good :slight_smile:

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I have HS xx my go to for prevention is tea tree oil in your common areas :heart:

Constant hair removal can cause cysts , boils ingrown hair follicols.
Trim what annoys you and leave the rest alone

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Are you diabetic ? I am n go threw the same issues but I get flare ups when my sugars are out of control. Also have PCOS . Use dial antibacterial soap.

No experience but I did some quick research in the past and they are thinking it is related to underlying food allergies/intolerances. Possibly worth trying an elimination diet.

I’m in this support group. I do not have HS but joined to support my Friend.

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Can you do laser? Might be a better option.

How about a lady hair trimmer? Maybe cut the hair shorter so it’s not as noticeable perhaps? You get different size guards :woman_shrugging:t2:

Help a mama out and respond anonymously on our forum. Does anyone suffer from hidradenitis supperativa?

Help a mama out and respond anonymously on our forum. Does anyone suffer from hidradenitis supperativa?

Have you tried sugaring? It’s kinda like wax except it doesn’t attach to the skin, only the hair so there is less trauma to the area. I have it as well so I know your pain! Hope you find something that allows you to feel comfortable and confident!

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Ive had it for years had drainage and everything seen dermatologists but nothing helped,until i read somewhere about tumeric milk and my journey of recovery started,its been like 6-7 years now without any flare ups whu whoo,just wash with red anti microbial soap and use dove deodorant spray under arms …and hair removal cream for the hairy bits viola

Yes I have it. There are several support groups on Facebook about it. Just use the search bar. However specific to your hair question I’m also an esthetician and a cosmetologist and I highly recommend getting laser hair removal. Especially if you’re flares are typically triggered by body hair. Look for anyone that has a yag laser in your area it’s the BEST treatment. Pm if you need to.
-Another soul suffering in silence…

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Doctors prescribe something called ‘Hibiscrub’ it’s similar to what they use in surgery to clean the area. You use it once a week and it worked wonders for me. I still have the bottle from over a year ago x

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IPL, it’s the way to go. You will need to have it done three or four times but so worth it. Ask your nearest salon or aesthetician to give you a demo.

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I have it also but I’ve been able to control it by finding the right deodorant for myself and avoiding shaving. I also have RA so I believe my medication for it helps keep mine at bay. I heard honey bandages work but never used myself. Also Vicks which I have used to bring them to a head so they can drain.

Try using the beard trimmers and just keep it super short. It’ll at least make YOU feel better!

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Yup! It’s awful! I’ve had it for years but just recently learned it was an actual condition, I thought it was just me and my dad

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I do… currently in the hospital because I have sepsis from it. Along with low oxygen from covid. It’s truly the worst and so fucking painful! There’s awesome support groups on Facebook and they have alot of tips and tricks that I’ve found helpful and also makes me feel like I’m not so alone in this. I know how much it sucks and I’m here if you need a friend who knows what your going thru!

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I haven’t done any kind of research at all but since I have been on Keto I haven’t gotten the first cyst. I usually keep them all summer on my thighs and arm pits and I’ve gotten to the point I take doxycycline daily and when one would come up let my cousin use a Scalpel and cut it open and drain it at home. I’ve been on keto since April and haven’t had the first cyst! I can shave everything again without worry! No going off Keto for me simply to keep the cyst away.

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I was just diagnosed and seeing a derm tomorrow…I feel your pain

I haven’t found anything yet :frowning: but I feel your pain last year I had 3 cysts removed from my armpit right before that I had one behind my ear removed and before that I had to go to er for a few on my face that caused bad infections :sob: my Dr is talking about putting me on antibiotics long term
I hope you find some thing that works and it gets better!

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If you are a candidate for laser hair removal , it’s been shown to also help HS

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I have been struggling with it since I was pregnant with my first son… it’s recently gotten alot worse since the birth of my second son… I wish you luck… I saw a video recently where Dr. Pimple Popper treated a woman with HS with steroid injections in the affected areas… she said it made a world of difference but looked pretty painful…

I have it but not that severe. I have only had issues in my under arms and in my breast tissue. It’s very painful when it flares up and has hospitalized me twice, almost septic. I truly feel for you, OP.

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Change your diet. Avoid dairy, sugar, anything processed, starch. I went from needing surgical procedures to barely any type of flare ups unless I eat wrong or get sick with something and my immune system is drained.

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There is an absolute amazing group Hidradenitis Suppurativa Support Group that has great resources and support system

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OMG I’ve never been diagnosed with it but I have the same issue and it sucks

There are some treatments now to help, such as some biological, etc. They are pricy, but they have assistance programs.

I have been going through this since I was 12 years old. So almost 20 years. I finally went and seen a dermatologists. They recommended I use an antibacterial soap on my problem areas. I haven’t had a break out since. I just use liquid dial soap daily when I take a shower. The scars have started to fade. I didn’t wear shorts for almost 15 years. And now I’m back to wearing shorts. I’m telling you it’s a game changer. And a cheap one.

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I have it as well. Humira has worked well!

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Tea tree oil body bar

I can tell you that it does run in families. Both myself and several cousins have dealt with it, as well as other family members. I had to use Hibiclens soap. My dermatologist put me on Keflex for six months and I had to apply Clindamycin on all my areas where the breakouts were occurring. After the first six months, it was improving, but not gone, so I had to do another round of Keflex for another six months. It finally cleared up, but all those antibiotics wreaked havoc on my colon, not to mention I had to take Diflucan weekly because of the yeast issue.

Would you get all the hair laser

Try getting the hair lasered off.

Just be you and screw the simple minded jerks that judge. I know that’s easier said than done with something like this, but you are already stronger, and I bet nicer, than most people. The world is cruel, but there are people who will see past it.

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Maybe just trim it very close

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Currently on antibiotics for it under my arms can’t wear deodorant so I have to shave every other day luckily shaving like that I don’t get musty :rofl:

Have u thought of lazer for permanent removal could he worth a try

I have the same issues. Ugh :weary: I’m currently on antibiotics. The first round were steroids. Glad to know what it is called though.

What about threading!

I use Hibiclens (Chlorhexidine Gluconate solution 4.0% w/) it’s an antiseptic skin cleaner. I would get armpit cysts all the time. I use this soap every day I even use it to shave my armpits. It works for me.

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I haven’t been diagnosed but get boils under my arms between my breast, on my thighs sometimes even in the groin area and I of course cannot use a razor because that makes boils pop up on me so I use bikini razors they don’t seem to trigger a boil to pop up right after I shave

What about just using clippers to get it short? Not shaved but just shorter

I don’t have it but would other hair removal methods be an option? Nair, wax, laser hair removal? Talk to your derm

Follow the directions and avoid the lower lips, but this stuff has helped a ton with my face, breasts, armpits, thighs, and groin/butt area. It is best if you get help from your partner for the lower bits (because you let it sit on the skin for a minute or two) and then hopping in the shower :slight_smile:

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Sweetie, I have it and had it since I was 14. Mostly my groin and bikini line but a few under my arms. It is a vicious and excruciating disease! Go to a dermatologist, they can treat it with long term antibiotics and steroid cream during the breakouts. Get you this OTC cream called Emuaid Max, its a lil pricey ($25 @ Walgreens for a .5oz jar) but it doesn’t tale much and works wonders!!! There is also a page on FB that I follow for HS, you should join. Its a whole community that knows of it, has it and we support each other. I’m so sorry you have it hun, I wouldn’t wish this crap in my worst enemy!!! Please feel free to pm if you’d like. This disease is hell!!!

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Sweet lady. Sending you love and peace. I hate that society has made women feel like body hair is BAD. It’s natural. You’re beautiful :raised_hands:t2::rainbow::heart:

I unfortunately have it.

I don’t suffer from it, but saw a woman on Dr Pimple Popper that had it. It looks incredibly painful. Prayers for you that you get relief

Go join the h s group with pictures such a life saver for many people

Caprice James Marestin

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Wear leggings. They’re really cozy. And I don’t like shirts with no sleeves either. But there are super cute shirts with sleeves that will easily conceal it.

Yes and I’ve also had to goto the hospital to have them lanced. I’ve been dealing with it for over 10 years. I quit using a razor and use a trimmer which has helped tremendously!!! Thank goodness my ole man doesn’t mind a little hair! Lol

I have hs! I use clindamycin on my cysts ad they come. My derm also makes sure I have a supply of doxycycline so that if i do get a bad flare I can try to stop it with antibiotics vs it getting huge and needing drained. For me I have to shave but it depends on what I am shaving with! I leared to shave in the direction of hair growth only. It leaves it a little less smooth but I have less flares. I also use cerave acne wash on my lady bits minus the days that i shave as the pores are open and it tends to irritate them. I use aveno wash for eczema as i have that and so do my kids. Thats what i also use as my shave cream. If i have a sore flare ill add in some dr bronners peppermint soap doesn’t helps cool off my lady bits and take the sting away for a bit!!

Have you seen a dermatologist recently. There are better medications for this condition now. Humira being one of them. It’s not ideal to take medicine, but it might be worth it for you to look into

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