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,...

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awesomeusername 08/04/2011

Hey guys/gals

Colleenie said any info would be helpful, and I think she's right. I kind of went on a binge buying stuff for my HS recently. I wanted to wait for some results, but it doesn't hurt putting out there what I'm using- and please let me know if you've used any of the products. I use Amazon because I trust it and because of the customer reviews, but I'm sure you could find some of the products elsewhere.

***For Friction:
Monistat Soothing Care Chafing Relief Powder-Gel
http://www.amazon.com/gp/product/B0012ZNSWE
Before any men skip this because it's made by Monistat, this gel is for you too. It doesn't treat any feminine issues, just chafing and any irritation that may be the result of friction (a serious enemy).

How I feel about it: I looove this so far! It is a great skin protectant and is totally unnoticeable anywhere you put it, plus it feels silky. AND a little goes a long way-it's well worth 8 bucks. Try it! Especially if you're overweight like me. It's a good preventative measure.

Personal Usage: underams (especially the crease), inner thighs

***For exfoliating, scar treatment, blackheads, oily skin, ingrown hairs:
Salicylic Acid 20% Gel Peel, 30ml (Professional)
http://www.amazon.com/gp/product/B000PLUZL8
Check out the product description for details and definitely read some reviews. I used this before when acne was my biggest issue and it cleared it up so I tossed it somewhere. I bought it again when I found that others with HS had good experiences with it.

How I feel about it: So far so good. I haven't had any additional flareups. I also like that I can do spot treatments with just a q-tip. Super excited about it because it cleared up some beginning boils between my breasts- which would have been some new and exciting territory for my HS. I hope it will keep it away too!

Personal usage so far: inner thighs, underarms, in between breasts, mons pubis, labia majora. (get some guaze or cotton balls, and qtips)

WARNING: don't use this on more than 18 square inches of skin in a day, don't let it sit for more than 8 minutes, don't use on broken skin, and be prudent when using on very irritated skin. In my underarm I used it on a boil that is going to drain soon. Stung like a mofo. I wouldn't push usage beyond the external portion of the vagina.

Strategy: Divide up the problem areas. I did thighs & some ingrown hairs one day; underarms & some more ingrown hairs another day; and tested it on half my labia majora another day before doing the whole thing. I'm also impatient so I did my thighs and underarms today XD

Also, there are many other types of peels, and strengths. I'm starting with S20%, and if needed I'll go higher or try glycolic.

***For cleansing, exfoliating
AZTEC SECRETS Indian Healing Clay
http://www.amazon.com/gp/product/B0014P8L9W
I haven't tried this yet because I've been using the salicylic. If you use this first, you must wait 2 days before applying the acid. I may begin usage next week.

***Aftercare
Povidone Iodine Swabsticks 1's - 50 Per Box
http://www.amazon.com/gp/product/B0006GE50Y
I like this. Individually wrapped and enough iodine to coat a good portion of skin, an extended underarm for example.

Band-Aid Brand Adhesive Bandages, Assorted Sizes, Variety Pack, 280 Count
http://www.amazon.com/gp/product/B001AJS1AQ
I really prefer guaze, but this is more practical for me at school, or when going out, and sometimes at home. I used to go through ALOT of bandaids between pain management, cleanings, and friction reduction. This is more bang for your buck and provides many size options.

Nexcare No Sting Spray Liquid Bandage(.61 Fl Oz)
http://www.amazon.com/gp/product/B00094EFGW
Haven't tried this, but got it for areas where bandaids aren't a possibility.

Nexcare Waterproof Clear Bandage Assorted Sizes, 50-Count Packages (Pack of 4)
http://www.amazon.com/gp/product/B001CBDLX4
They're waterproof XD and VERY strong adhesive, great for healing, but if you think you can put it on and take it off in a couple minutes, you are in for a painful surprise.

First Aid Only Triple Antibiotic Ointment Pack, 0.5 Gram, 10-Count Boxes (Pack of 10)
http://www.amazon.com/gp/product/B000YMFW9I
Neosporin wasn't putting my mind at ease. I haven't used this yet. I got it because I need bulk.

Bio-Oil, 2-Ounce Bottle
http://www.amazon.com/gp/product/B000VPPUEA
I got this for scars. My thighs are making progress so I hope I can start using it soon.

I'm hoping to get some hibiclens soon from what I read here, as well as some dressings that don't demand strong adhesives.

TL;DR: I highly recommend the monistat chafing gel and salicylic acid.

deleted_user 08/04/2011

Wow, thank you for the great post!

awesomeusername 08/04/2011

'Tis my pleasure :)

jilly1985 08/04/2011

I've found for me that neosporin works better than other ointments but only if I like pack it on! lol thanks for all the helpful products. I use the hibicleans and neosporin for the healing wounds and so far one has healed and two are almost gone! I also use gold-bond medicated powder. I've been using neosporin forever but started using it with the other 2 items last week and so far so good. I also like the gauze but I use large adhesive band-aids as well I really want to try the ministat chafing gel. does it help with itching? because mine itch a whole bunch! :) Thanks!

awesomeusername 08/04/2011

I do use neosporin for regular cuts, but for my HS I end up applying alot multiple times like you. So I guess it was more of a financial discomfort haha. I hope it works well, and I'll let you guys know about any progress on that.

As for the chafing gel, I usually don't experience much itching. The other night I did have a spot in my underarm that was pissing me off, and of course I didn't think to try it. I will definitely try to remember to apply some the next time I get an itch and see if it does anything.

deleted_user 08/04/2011

NEXCARE is the best bandage for H.S. I swear! Every size you can think of and fits anywhere. I use Neosporins cleansing foam and Hibiclens alot too!
Thanks for the post!

deleted_user 08/04/2011

Although my HS is virtually healed, I had terrible problems with itching when it was active..I mean it drove me nuts. Hydrocortisone 1% works well and you can get a higher strength from your Derm. Benadryl Gel also works nicely and that old standby Bactine isn't bad either. Solarcaine is another one and it numbs things briefly. Most of my itching took place PRIOR to an actual outbreak...on broken skin, these products can sting, so be careful.
Also, I used to put all this stuff in the fridge...it felt even better putting it on when it was nice and cold......

jilly1985 08/04/2011

yeah neosporin is getting expensive hopefully they heal soon ;)

@photojean--that's how mine are only when they are active they itch like crazy!

Thanks for all the suggestions! :)

IamDavid 08/05/2011

www.fighths.com/hsstore.asp

Colleenie 08/05/2011

Dear Awsome, Thanks for the great post. Good job!

awesomeusername 08/06/2011

:D My thighs are clearing up! I'm trying not to be too hopeful, and I still have a boil on each one that I'm waiting on. My underarms were doing better but today I wore a shirt made of rougher material and didn't use any chafing gel. My left underarm is pissed and has retaliated with a new abscess. I think friction might be the source of my HS. AND today I told my sis I have HS (she saw all of the stuff I bought off Amazon). Turns out, she has it too! Hers is much more mild. Aside from you guys, she's the only one who knows. Feels good to tell someone.

deleted_user 08/06/2011

I think your right on the friction thing. I've been using plain old A and D. I just put on a thin layer in those places were friction is an issue like under the breast and in the inguinal area. I really want to try the Moniostat (sp)stuff you are recommending.because it sounds much better. It would be nice to have skin there feel silky instead of greasy.

deleted_user 08/07/2011

Oh! ANY kind of friction is the worst! It always exacerbates HS..that's why finding the right clothes, underwear especially, is so important. For me, everything had to be soft, washable in the gentlest detergent (Deft is good), and non-binding.

deleted_user 08/09/2011

@ awesomeus- I took you advice and tried out the Monistat Soothing Care Chafing Relief Powder-Gel and you're right it's great stuff. I broke out with a large sore on my outer labia which was situated just right that everytime I walked it would rub and hurt like hell. Since I couldn't bandage it, and it was not even close to being ready to open, I went and got the Monistat stuff and worked very well! I applied it to the area of the sore and the area opposite it and did not notice any pain for hours. It is long lasting and pretty much sweat resistant.

Thank you so much for recommending this because I've never heard of it before and it has indeed made my life better. You get good karma points for this one ;)

I plan to give the Salicylic Acid 20% Gel Peel a shot pretty soon and I'll let you know the result. BTW, have you ever used that in the inguinal area and do you think it might be to harsh? That's such tender skin so I'm hesitant to give it a try. At the same time I get outbreaks there so if I can pevent them I'm ready to give it a shot. Also, have you used the Salicylic Acid 30% Gel Peel. Do you think the extra ten percent might be too much?

saffr 07/29/2015

Hi, both my sister and I have been dealing with this for some years now. Her obgyn told her to use the birth control for three months without stopping and see if it helped, but after a while it came back. However, I started using an unusual method but it has been very efficient! As soon as I notice the bump is beginning to come up, either because of the pain that is associated with it or whilst showering, I immediately apply proactiv's refining mask on it and by the next day or two, the swelling is gone and it basically dries up!! My sister didn't believe me at first but she started trying it as well and agrees that it goes away within a day or two! After I put the refining mask on it, I cover the area with some cotton and medical tape (because I feel as though it gets worse when rubbing against my underwear) and I leave it on till I shower in the evening and then reapply. The only problem that I continue to face is the dark marks that it leaves!!
However, I hope this helps and that it works for you!!!!!

sunnybradshaw 07/29/2015

Hey Everyone!

It feels SO good to have this opportunity to share my experiences in a safe place. Hidradenitis suppurativa is something that I have spent much of my life trying to hide. I was diagnosed at the age of 12 and have been fighting it ever since, until recently. Even when people would ask me what it was, I was always be too ashamed to say what was actually happening with my skin. H.S. has negatively effected my life in many ways. I have been unable to feel comfortable wearing bathing suits or even sleeveless shirts. I was unable to participate in certain activities that required uniforms that may show areas effected by H.S (ex. cheerleading). My family and I spent YEARS and YEARS trying to find a cure until finally I went to a dermatologist that told me flatout, there was NOTHING I could do. I had tried everything: antibiotics, new diets, drinking only water, buying false products online (iodine water), body washes with salicylic acid, alcohol, everything. Well, something inside of me was just unwilling to believe that there was absolutely nothing I could do to AT LEAST reduce the symptoms (cysts, boils, and discoloration). Well, in 2014 I discovered Ubiquity Box. I noticed my friends skin (she also has HS) looked amazing. I could see where her scars had literally disappeared.

Let me start off by saying this, as someone who has been given FALSE hope of treatment numerous times, I would NEVER and I repeat NEVER share a regimen or treatment that was not VERY VERY EFFECTIVE. Seriously, there is no worse feeling than anticipating your condition will be improved only to be sadly disappointed. I just wanted to explain that before I share with you this regimen that has changed my life forever, seriously.

Well, the Ubiquity box is a skin care regimen (soap, astringent, oil, and scented oil) that has SEVERELY reduced my HS symptoms. It has helped with skin discoloration, reduced the presence of cysts, and changed the quality of my skin.

For the first time in my life, people complimented me on my skin. I didn't have boils between my legs or under my arms. My entire life changed. I had a moderate to severe case of HS but I literally can't use any other soap! I ran out of soap one week, and my symptoms came back SO BAD that I had to rush order another Ubiquity Box. The owner has HS and created the regimen herself, which is great because there is first hand experience for our condition.

Since this is a support group, I wanted to take the opportunity to share Ubiquity Box with you because it has helped me tremendously and I can finally live my life again. I can wear white shirts and don't have to have dark sheets on my bed (I couldn't do this before because of stains from draining cysts) I don't have to be ashamed when my legs are open because my skin is smoother and there are no cysts.

I really hope that you guys will try out the box because it has truly changed my life for the good. (Like a complete 360) As I stated before, I would never EVER give you all false hope, these products work. I have even got the boxes for family members with eczema and it has worked for them. Please let me know how the boxes work out for you and I look forward to hearing the good news about how they have worked for you. They offer sample packs if you want to just try it out. They also have a donation page if you would like to donate to expand awareness (since doctors "can't find a cure") , I have donated because I can't imagine life without the box so the owner has my support 1000%.

I just want to also mention, that another thing I love about Ubiquity Box is that, I don't have to go to a lot of different places to get what I need for treatment. Everything I need is in one box. It's a one box shop

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