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,...
Hello all. I'm new to the board and just wanted to share the routine that seems to help manage my outbreaks. My disease begain when I was about 16 and I'm still suffering today at 29. I have not been formally diagnosed by a doctor but I know this is what I have. Every doctor I've ever been to has given me some lame reason for my symptoms (MRSA, diabetes--which I don't have, being fat/unclean, even herpes!!!) So here are the things I do to minimize my outbreaks. I haven't had a monster one since September. My first 6-8 weeks after I delivered my daughter were ROUGH, but they seem to have evened out now (BTW - I was 100% symptom free during pregnancy so this is obviously a hormonal issue for me). Also, just to set up my 'type' of disease, I am overweight, female with hypothyroidism, affected primarily in my groin area (mostly stage 2, a couple stage 1) but occasional stage 1 spots under my breasts and left armpit.
My routine:
Prevention - Hot shower daily. Wash affected areas with benzoyl peroxide 2% wash w/ exfoliant (the brand is Acne Free). Apply Dove deodarant to affected areas before dressing (thanks to this board!). Wear cotton thong underwear only (sorry - TMI) because there is less fabric to rub in the groin creases (my worst area). Take daily multivitamin and DHA supplement.
During Outbreak - Add extra Vitamin A and zinc pill to normal multivitamin. Continue to wash with benzoyl peroxide until drainage occurs. Apply PRID drawing salve as directed to encourage a head to form.To encourage drainage, I alternate hot and cold compresses. Hot for 5 minutes, ice for 30 seconds, repeat as long as possible. I've had this method bring a nasty cyst to a head and drain after 1 hour!
After drainage - continue applying PRID until no more goo comes out (usually 1 day post drainage). wash affected area with hibiclense. apply neosporin to encourage healing.
Repeat!! :-)
I must also add that I bandage the spots as little as possible. I've read that tight bandaging can push infection back into the skin and discourage drainage. When you read about this disease possibly being caused by secretions trapped under the skin, it makes sense to avoid trapping more in there by not allowing it to drain freely. We all know that at times bandaging is necessary (i.e. having a drainer and having to go to work -- ugh, the worst!!), but whenever I'm around the house I go sans bandage, even if I have to put a puppy pad under my butt to sit on my own coach. Gross, but effective.
Hope this information can help someone. I know other's information has been helpful to me (especially the Dove deodarant) so I felt compelled to pay it forward :-) Questions or improvements to my routine welcome!
My routine:
Prevention - Hot shower daily. Wash affected areas with benzoyl peroxide 2% wash w/ exfoliant (the brand is Acne Free). Apply Dove deodarant to affected areas before dressing (thanks to this board!). Wear cotton thong underwear only (sorry - TMI) because there is less fabric to rub in the groin creases (my worst area). Take daily multivitamin and DHA supplement.
During Outbreak - Add extra Vitamin A and zinc pill to normal multivitamin. Continue to wash with benzoyl peroxide until drainage occurs. Apply PRID drawing salve as directed to encourage a head to form.To encourage drainage, I alternate hot and cold compresses. Hot for 5 minutes, ice for 30 seconds, repeat as long as possible. I've had this method bring a nasty cyst to a head and drain after 1 hour!
After drainage - continue applying PRID until no more goo comes out (usually 1 day post drainage). wash affected area with hibiclense. apply neosporin to encourage healing.
Repeat!! :-)
I must also add that I bandage the spots as little as possible. I've read that tight bandaging can push infection back into the skin and discourage drainage. When you read about this disease possibly being caused by secretions trapped under the skin, it makes sense to avoid trapping more in there by not allowing it to drain freely. We all know that at times bandaging is necessary (i.e. having a drainer and having to go to work -- ugh, the worst!!), but whenever I'm around the house I go sans bandage, even if I have to put a puppy pad under my butt to sit on my own coach. Gross, but effective.
Hope this information can help someone. I know other's information has been helpful to me (especially the Dove deodarant) so I felt compelled to pay it forward :-) Questions or improvements to my routine welcome!
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
I shower in the AM and PM washing first with Dial gold soap in my arm pits, under breasts, panty line, buttocks, rinse then do the same with hibicleans and let sit for a bit then rinse again. I then wash my whole body with dove soap because it is gentle and keeps my skin from drying up.
After my shower I spray my arm pits and under breast (ect if needed) with Bactine spray and let that sit while I use some lotion on the "normal" parts of my body. I pat dry or use the hair dryer to make sure all areas are dry then I use powder. I dont use deodorant except for special occasions and then I use a natural one called dessert essence that is lemon and tea tree oil. It took about two months of being stinky but now I don't stink :)
I do not wear underwear or normal bras. I get some of those cotton tank bras from walmart. I think they are 3 for 9.99. I go out in the AM and then I am back home around 2:00 and I take all my clothing off and put on some loose pjs, reapply powder and rest.
I also have been on a gluten, dairy, soy, and nightshade free diet now for about 2 months and I am feeling really good! Breakfast I have eggs fried in coconut oil with turmeric. I sue coconut milk in my coffee. It was HARD to give up my non dairy creamer but I did it!!!!
I hope some others will share their routine the more info the better I think and I have gotten some great ideas from peoples post :)
I just had my first bump since September. It seemed to drain quicker and heal faster this time. Could be just a coincident though.
Daily dose of Bactrim, Minocycline, Zinc and Biotin seems to help.
For the moment (subject to change) the few that I do get don't get very big and for the most part the pain is manageable (Liberal dose of Gin and Aleeve helps).
The most effective treatment to date has been to put as many of them motherfuckers in the landfill as possible. Surgery works when done correctly.
Hope this helps.
if i allow air to the wound. no results. thks for the posting. im determined to find the answers to this monsteress mess. blessed.