Hi. I count my days in coming or going..... Never gone.

Same here...comes and goes, but never gone.

Are you a girl or guy? I have heard some women stop getting them completely after menopause. Something about hormones. I know my periods trigger flare ups.

For guys I haven't ever heard anything so lucky.

Hey! sarahbrave I am a woman! One on my ninth year after a total hysterectomy and I'm sorry to say it's not all about the hormones. Or any other one thing for that matter. In my 35+ years of HS I have noticed there is nothing I can do to stop it. So I will just keep praying for us all. One day...

Everyone reacts differently so there is always a chance it might help you. Try it; TRY anything you think might work.

Hi Coastal, I too had a total hysterectomy in my twenties and my flares didn't start until late 30's. Not hormones for me. It's perspiration of basically any kind! As far as it going away-no such luck. What I have found is it will go down for a few days or couple of weeks while still leaking. I also have noticed with flares that mine hit the hardest in one area for several months. I have it "downstairs" everywhere, both armpits, and buttocks. Going for multiple surgeries soon tho sometimes I question "why'? because I heard it just manifest elsewhere or in some cases the same spot. I don't mean to be a big fat downer but the thing to remember is this disease is DIFFERENT for everyone! Yours could go away or into remission for a long time so there is hope! I think the most important thing is finding your trigger!!!! If you can do that it might help a lot. Could be food, sweat, stress. This reminds me of MS in a way. Difficult to diagnose, incurable,and VERY different symptoms for each person! (just wish we had their funding lol) So frustrating but hang in there. I think if you find your trigger it can at least help you for the future! :) Wishing you a pain free day!

Finding your trigger is so very important. Mine is stress. That's really hard to completely control. I have never sweat and always thought that was what was wrong with me for many years until I found out it was HS. Food can be a factor but not major for me. It just flares up for no reason at all when and wherever it wants.

Speaking about triggers, I have realised that "they grow" when i reach the days of my period. Also, i eventually found out the reason why on earth i never had so much hair at legs or even no hair at the spot highly at legs next to inguinal area (i don't know the exact word).
Anyway,dear CoastalT I read somewhere that they almost found the medicine that occurs the disease and it is called "adalimumab" by AbbVie company. They still do research though and waiting approval.

Oh! I was excited there for a minute... Adalimumab is Humira which may be great for Chrons and a few other diseases. Been there done that...not a HS cure.

Hopefully something new will come along one day!

Well, if you have tried this and there wasn't any result thanks for telling me,because i had read the article that said "Effective treatment for HS" and i was looking forward to... What the fuck is this and they cannot find any cure at all?

The latest caveat seems to be that lately at the end of Humira commercials, there's a caution about taking Humira if you have a pre-existing infection... I hope that doesn't disqualify anyone, because I've been very impressed with some of the more recent antibiotic work on HS (as you can see from my other posts) that makes me want to think that infection may play a very big role in HS in most if not all patients.

I should hope a doctor would know if a particular patient is so inflammed already that they're not at great risk of immunosuppression from an anti-inflammatory like Humira, so hopefully people's doctors can do a proper job telling if something like Humira is appropriate for them or not. I don't know of anything anti-inflammatory for HS including Humira that promises to be an outright cure, though.

The problem with a cure as I'm very tempted see it at the moment is that there may be infections that have one or more unusual types of antibiotic resistance that are at work in HS, and one of them may be able to provide a small resistant reservoir of key bacteria so that the infections never entirely go away, so then as soon as the antibiotic treatment stops, the symptoms are able to return right away, as seems to be very typical for HS.

Not only do many doctors seem to be unfamiliar with parts of that, a number of specialists may be also. One of these creatures - the one that might maintain a reservoir - typically calls for a long course of penicillin, but two things I cannot remember my regular doctors even trying are penicillin, and a long course of anything except doxycycline which doesn't seem to be qualified for that.

Some other troubles may include that we're all still learning about what bacteria are capable of, so it's still hard for just about anyone to do a good job to recognize the association between a microbe and a symptom in a lot of cases. There are some nasty things these critters do that are still not spelled out well in databases, and some that don't show up there at all yet.

Also later stages of HS are typically associated with a pretty broad range of organisms in the lit sometimes, so there are a lot of potential suspects in the line-up at first. Additionally some microbes don't necessarily cooperate with their own ID, and doctors may often have to take action before the lab results even have time to come back as recently happened to me again.

I'm going to try to put the microbe notion to the test soon, I'm looking forward to seeing a specialist and finding out how much help can come from addressing any obviously nasty infections present like Staph or Strep. My last great HS flare a few months ago obviously had a dangerous major infectious component, there's no doubt about that. One of my hard, stubborn cysts that never drain ruptured beneath the skin and as soon as whatever creature was holed up in there got out, I had a massive putrid abcess at the spot within hours and they nearly insisted on hospitalization. I had to do follow-up every other day so they could check for fasciitis setting in.

Hell with cure HS, THAT'S what I'd like to be rid of, I may not be so lucky next time - and still after all that I had to work the doctor to get a referral to an infectious diseases specialist.

One of the things I need to take up with the specialist is whether these cysts are another refuge for nasty critters - whatever came out to raise hell was done in by the antibiotics used, but the remaining cysts weren't helped at all, as if the same antibiotics bounced right off them. So I have more cysts probably of the same nature and still waiting to do the same thing.

I'm hoping the cysts won't still require surgery because of that trick, but if they do I'm hoping for someone to take a better look at my specific bacteria first and what antibiotics they should really be using, because I've had nothing but surgeries that never heal quite right, paving the way for more complications. Also I think all HS-related surgeries that I've had have gotten infected in spite of my taking the antibiotics prescribed religiously to prevent that.

So that is my new kick that I'm on, let's really try to find out exactly what we're dealing with for once and see if we can't take much better aim with antibiotics, at least at the worst well-known troublemakers, and let's just see what happens...