Hidradenitis Suppurativa Support Group

Hi everyone. My name is Olivia and I live near Seattle, WA. I have had HS for 11 years, but have only been diagnosed for one year. Before that I thought I just had some seriously severe acne. I had never seen it this bad but I had no idea what to do. I happened to be in the hospital for something else when I was diagnosed.

Most of the time I am OK. I am on 100mg 2 x a day of doxycycline and have been on that for awhile. I also put vinegar on it and that helps some. But the skin yeast infections that happen with it and when the lesions get inflamed and infected the pain is quite bad as I am sure you all know. I looked at one a few minutes ago and I noticed the hole in it is bigger than a pencil eraser. You can see deep into my side. This is just not the day for this. It's just not. Ive had them like that before, but I am losing my patience now and am just grossed out by it all the time.

I guess I just needed to vent.

Hello Olivia, and welcome to the group.

Vent any time you need to, that's what we're here for. I'm so sorry you had to go so long without a diagnosis, as HS is much easier to deal with early on, when it is is stage I, or even stage II. What kind of Dr. is treating you now?

There is much information in the older forums on many aspects of HS and the daily care and coping. If you know how to navigate the site, browse through some of the older posts and articles. If you have any problems, please feel free to PM me any time and I will be glad to help you find what you need.

I'm no expert at this myself , but can usually find something to help.

In the meantime, ask any questions you have and I or one of the other members will surely have an answer or know where to find it.

As you can see, this is a small group, and it's slow in the summer with posting, but I and a few others are on most weekdays, and I check in at least twice a day.

Again, welcome and hope to get to know you better as we navigate this enigma called HS.

Hugs, Karen

Hey Olivia! Welcome to the site. I'm sorry you're having such a rough day. I feel for ya. I hate it when the boils pop and leave huge, gaping holes. Its just sooooo gross. I mean, yeah, its really nice to be "holier" than everbody else, but still.... Ya know?

I've not used vinegar for a loooooooooooooong time, I found Tea Tree Oil and that seems to help both the boils and the yeast. I used the 100% stuff from the health food store ($23), but I found some 100% at walmart ($8). The 20% solution gave me a chemical burn and didn't work well at all.

It stings like fire, but it helps clear things up. I had a yeast infection under both arms for several months. I finally got it cleared up using ketokonozole from the doc along with the TTO and have kept it away with just the TTO.

I hope enjoy the site and maybe you will find something helpful here.

Have a better day.

Hugs, Michelle

Hey Olivia:

I hope it will ease your pain a bit to know that I am too going through a flare up. One of the bad ones actually. I feel like I am growing a third leg. have you tried neosporin on the eraser. lololol. Just making lite of this because we have dealt with enough of this HS stuff to drive us nuts. Try the neo. Many years ago before I was diagnosed and knew there was something wrong I got this really huge one in their fave spot (My groin right where the undies hit, just lovely) and that one had me bed ridden for a whole weekend from friday morning to monday morning. Good thing mine popped that sunday night due to a warm soak (warm the water must of been boiling) I felt such a relief but when I decided to look withthe help of a mirror what I saw sent me in to shock. I didn't think it was possible for someone to have a hole this big and not bleed to death from it. I kept it clean and I actually plugged the hole with neosporin and bandaged it up. I must of gone through a few tubes because I bathed like three times a day during the week to be able to gett all the gunk out and plug the hole again. As the days wore on the sore got smaller and smaler and it actually healed. Whats best is that I havent had a bumpie there again. What really helps me is the draining. I have noticed one I have proper draining my sores usually heal or the swelling and pain is greatly reduced which helps immmensely. Try the hand sanitizer.

And the TTO, it does wonders for some of us.

Hi yes we do understand I just had surgery yesterday on the 10th under my arm n I have one on my private area its consuming my life the sweating triggers mine stressing n its embarrassing n its leaves me speechless

Demmi, sorry you are having such a bad time of it right now, but happy for you that you got the underm one removed. I had that done 10 yrs. ago and that one never came back. Did your dr. say if the other one can be excised or not? Sure hope so.

Take care of your good self, and keep us posted on your progress.

cool hugs, (don't want to give you the sweats )

Karen

Thanks all for the warm welcome =)