hi emily, sorry you are suffering. i too was diagnosed last year after 27 years of suffering this condition. i don't bother with the uk doctors anymore as they don't seem to know much about HS.
i self medicate - i bath/shower twice daily, washing with organic tea tree oil soap/bodywash, i use colloidal silver cream (found it after much internet research) on my "bumps" afterwards & use a topical antibiotic if the sores are open & draining. i take cocodamol 30/500 (prescribed pain killer) for the pain, a 500mg tumeric capsule once a day (i stopped taking this for a week & had a big breakout, will never stop it again), a good all round multivitamin with zinc.
i can honestly say that things have improved greatly since i started doing all of the above. last year i constantly had draining sores around my groin area & "girlie" bits, i have reached stage 2, since starting my "regime" i still get the "lumps" but they seem to go down before the draining starts which is a huge relief.
good luck with everything & take care.
a fellow uk sufferer, lou xx

Neither laser nor botox here sorry. Though I would do your own research and just try to carefully weigh the pros and cons. Also the effectiveness of these treatments could be different for everyone so I dunno. Gee this doesn't sound very helpful at all does it? lol

There is no way to know if the HS will come back or not. Personally I think that this disease is not something that can be fixed on the outside....something is going on inside us that is causing these flares and whatever it is it is not natural.....some sort of defect. I think the cause of this disease is either chemical/hormonal or genetic or a combination of the two.

Also each person is different with different circumstances and wallet size. If you choose one of these treatments or find another share the results. Excision of the glands is the only thing I have heard of that actually can stop the disease....and there are over 2.6 million sweat glands in the human body...so...excision of all of them is impossible of course. And if you get one the one next to it can still become infected.

I dunno....I know that my darkest days with HS I would pay handsomely for relief...a cure.....a way to stop the pain or whatever.

I'm starting to wonder if these doctors just seem ignorant because they actually cannot do much to help us and it makes them feel powerless and vulnerable? My best doctors were the ones who told me up front there is not much they can do and at least stayed honest with me while looking me dead in the eye.

Not sure what the purpose of this response was I just sort of started replying sorry about that. lol.

I hope you get it figured out and welcome to the group. We know your pain and frustration here all to well.

Take care be blessed

Hiya! Just wanted to say thanks to you guys - really appreciate someone talking to me who knows what HS is all about. Just wanted to let you know that I have been washing in Head and Shoulders (high zinc content - I learnt about on this site!) which has resulted in getting no new lumps! (I prefer to call them lumps, boils just sounds nasty!!) Still have a couple on my inner thighs to get rid of but the pressure has definitely subsided.

Thanks dustbucket for you info - have decided to forget about the botox and IPL hair removal for the moment while I give some of everybody's tried and tested remedies a go!

Lou - nice to meet a fellow UK sufferer! I used to live in Eastleigh myself while I was at uni and still head down there to see friends sometimes - my best hospital experience was at the Winchester Hospital and I was diagnosed with my doctor when I was down there in Eastleigh despite having had it for a few years previously! Thank you NHS Southampton!

Take care both of you and keep in touch!

emily x

I have talked extensively with dr's regarding hair removal since the disease is in hair bearing regions. I think that will be my next step if Humira doesnt work anymore. My dr thinks if I stay on this for a few years that maybe it will peter itself out. I have even talked to the dr's about complete hysterectomy bc they sa after menopause most get better bc your hormones are different. I have tried any and all things so if you have questions about meds to try that worked for me for a time frame before I had to move on. Maybe I can give you some info on things you havent quite tried yet or hey just listen when you want to complain and tell you everything will be ok. I have been on here for about a year now and have found so much comfort I'd love to give some of that back. My prayers are with you!!