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,...
I have had H.S since 2005 and my first lesion is still open and draining!
I get them in my armpits and also on my bikini line. For awhile no one knew what it was. When i lived in G.A. they told me i had a staph infection, then when i moved back to New Orleans this crazy qwack told me I had ingrown hairs and wanted me to have my hair removed glad I didn't do that ! But over the years I've researched it and found out what I had and was able to print out the paper work and bring it to a doctor and show him exactly what I had! I thought i was going to be the person that could take the right antibiotics and it would go into remisson but I was not that person. I have alot of tracks and must of my lesions are always draining, I ruin all my shirts, I go through about a box of gauze I week.
There are studies going on to help find a cure but what do we do for the moment is the question!
I usually flare up around my cycle thats like my alarm that its coming.I looked up if I could get SSI for It, because when it gets bad i can't really move my arm. Bad enough I have a track on top of a muscle or vein that makes it very hard to lift my arm on a daily base. Does anybody know anything about making slow down I am in stage 3 and i read that you can make it o back but i have tried everything the turmeric and antibiotics and the bactrum. I know it will not go away but just slooow down just a little.
I get them in my armpits and also on my bikini line. For awhile no one knew what it was. When i lived in G.A. they told me i had a staph infection, then when i moved back to New Orleans this crazy qwack told me I had ingrown hairs and wanted me to have my hair removed glad I didn't do that ! But over the years I've researched it and found out what I had and was able to print out the paper work and bring it to a doctor and show him exactly what I had! I thought i was going to be the person that could take the right antibiotics and it would go into remisson but I was not that person. I have alot of tracks and must of my lesions are always draining, I ruin all my shirts, I go through about a box of gauze I week.
There are studies going on to help find a cure but what do we do for the moment is the question!
I usually flare up around my cycle thats like my alarm that its coming.I looked up if I could get SSI for It, because when it gets bad i can't really move my arm. Bad enough I have a track on top of a muscle or vein that makes it very hard to lift my arm on a daily base. Does anybody know anything about making slow down I am in stage 3 and i read that you can make it o back but i have tried everything the turmeric and antibiotics and the bactrum. I know it will not go away but just slooow down just a little.
The only thing that has ever helped slow my HS down has been a cocktail of antibiotics, mood elevators and pain medication. The antibiotic cocktail varies because of tolerance after awhile, but I take it everyday of my life anymore. Nothing else has ever helped me.. nothing. At least now, even though I am a stage 3... they have slowed down on their manifestation in new areas and have also been flaring up less. I STILL have the open ones, the painful ones, etc. but I can handle those, its that I just do not want any more NEW ones! Talk to your doctor and see what they think about trying this with you, maybe it will help you too.
RobMc: that sounds like a great idea but it will be hard to do but i can cut down. Thank you all for responding;)
i read that for the turmeric to be effective black pepper needs to be taken as well. i am adding both to my food.
i have been curious as to the effects of turmeric. do you take black pepper on your food?
if not maybe you could try taking it and see does the turmeric work for you.
would you post back and let everyone know.
it's good to read things and then to find someone who has direct experience.most people say that turmeric works for them so i havent found anyone to ask that question of.......
i am a little concerned that you were told you had ingrowing hairs. this is what my 19 year old daughter has been told. i dont know exactly what she has as she is embarrassed to talk about it. she cant be too bad as i do the laundry and theres nothing to suggest discharge. when you were told you had ingrowing hairs did you have red lumps with no discharge or did you have discharge and other symptoms?
sorry to ask so many questions but i am wondering at what point doctors say you have ingrowing hairs or hs stage one.
i hope the turmeric begins to work for you or you are able to find other relief.
thanks for the reply. i will ask her. she is going back to the docs and asking for a referral to a dermatologist, i am trying to find a good one who knows about hs as there is such a difference in what they know.
yes it can get very wearing. my ex husband has been stage 3 since the early 1980s. its too long to suffer.
i maybe spend too much time on hs forums but i believe keeping in touch, sharing ideas will speed up the knowledge and lead to help ( imagining a cure just seems too impossible!)
the more people who become aware of this problem the more help is likely. stay as strong as you can and continue to do what you doing..posting and replying,sharing information is key to fighting this.