Anyone else with hydrentitis suppurativa?

[alabasterangel]

I've yet to receive a formal diagnosis but I suffer with textbook symptoms and have done for 20 years. I didn't even ask for help until about 4 years ago and I was getting married and worried about the state of my armpits and wanting to wear a nice dress. GP said its just 'one of those skin things' and gave me some antibacterial wash, which did nothing of any use. I think I'm going to have to go back, but question why, as I understand a proper diagnosis would be rare and there isn't much in the way of long term treatment?

As a teenager I had recurrent lumps in the crease at the top of my legs, but (touchwood) barr the very odd one, they are okay. I think not fiddling with them helps a lot? The ones under my arms are the worst, and now I seem to have 5 or 6 smallish spot type lumps which just never properly heal and but never propery drain either. My skin also looks red and sore, permanently. On top of that I will occasionally get a proper boil type lump, which come up really quickly (often overnight) and they burst really easily then take a while to heal. I also have tiny blackhead type spots all over the area, looks like shaving stubble, but are teeny tiny blocked pores. I also have outbreaks under my boobs, but not quite as badly.

Some things I have noticed which do help; shaving. Bizarre as that sounds, and I don't mean daily (that could be agony on my sore skin) but it would seem if I don't let the hair under my arms grow at all and keep as sweat free as possible, it's better. Making sure I use an antiperspirant every single day, and night, without fail. Again, if I sweat at all it gets worse. At night I also have a puff of cuticura medicated talc, and wash in the shower in that area with an antibacterial wash. Not fiddling. I swear what is in those lumps is rife with something nasty, and if i pick there then pick somewhere else, I can guarantee I'll get an outbreak in the second place. I also noticed that when I had a course of antibiotics for a sinus infection, it really went down. Trouble is two weeks after the course ended, it just came back.

Just wondered if there was anyone else out there with this, I don't know anyone in real life, and wondered if there is any sense in going back and asking for a dermatology referral (I do have private healthcare through work)

I have this .. Or I did, it seems to have faded away as I went menopausal. I've had the odd flare up but nothing like I used to get. I'd pursue it through your private health care insurance if I were you. I did that in my thirties (I'm in my 50s now) and I was given Androcur and long term Erythromycin. I also had two surgically removed in the hope that they wouldn't recur but they did so wouldn't recommend that. Smoking makes it worse and so does exercise - sweaty exercise - but as far as I know it's an endocrine disorder. My HS seemed to evolve - the lumps/boils used to come up and stay up and make me take a lot of time off work (they're always in a painful place too, either armpits or fanny) but the more recent outbursts have come up and burst within 24-48 hours. Poor you. Wish I had something more positive to say. It's grim and I wouldn't wish it on my worst enemy.

Yes I have it. Mostly in groin but I have an armpit one that keeps reoccurring and put me in a&e last time with the pain. Surgeons the next day said it was "tiny and not ready to lance"
I got home and lanced it myself, it poured and stunk, turned out it was massively infected and it should have been drained in hospital
I've heard good stuff about zinc gluconate and turmeric for it but keep forgetting to take mine (oops)
The groin ones don't bother me so much as at least they heal. The sodding armpit one took 4 months to close last time

Besides taking turmeric orally, you can also use it as a poultice. I do not have H.S. but I'm very interested in it.

Maybe not news for you three, but it tunnels under skin, can have multiple heads, is usually in damp moist places, more common in dark skinned people, and often starts prior to puberty.

Try turmeric! Please?

I think you should read the alternative medicine sites. Many doctors do not know much about it.

GoodAs, wow that sounds interesting.

I will order some capsules, do you know why/how it works hansie?

I feel a bit ick about the tunnelling aspect. Surely you could feel that? I don't have that much pain but fearful that may get worse.

Ex has it, and has been hospitalised having them cut out, abraded and packed and cleaned out. He had one so big in his armpit, he couldn't have his arm by his side.

If you're using turmeric as a poultice, remember it's a very effective dye stuff and stains stuff madly. It does have lots of good properties, though.

You can't feel the tunnelling as such. Like my armpit one, it starts v low down near my boob, but the actual exit is right in the crease of my armpit
If you google HS + turmeric and HS + zinc gluconate there is quite a few articles and research into it
It's horrible, I feel like people think I'm dirty or something

No, I do not know how or why it works. I just googled earthclinic.com, and there is info there that is new since last time I browsed there. So do read there, read the testimonials. Maybe not look at images!
I'm off to earth clinic now! When did H.S. start for all of you?

Hansie Thank you. It was bang on puberty I think for me. I can clearly remember going to do some clothes shopping with my Mum and her seeing that I had a plaster over a 'spot' on the crease of my groin. She asked about it and I remember her taking me to the chemist to get some magnesium sulphate paste. I had other lumps after that, but I don't think I told her about it. The armpit area came much later, into my twenties by then, but very sporadic. Under boobs much much later (probably another decade, but I'd BF babies by then and gravity was also not helping). Now the armpit area is the worst. I don't get massive sore lumps, mine are small, like mini-boils, probably a small garden pea size, then they rupture and instead of healing up, they just refill and refill and stay raised. At the moment I've got about 4 under each arm and several other grim looking whiteheaded rashy type spots which again, I can pop and pop and they just seem to come back.... I'm going to order some turmeric!

Turmeric is easily available. I'm in States, but Walmart has it. But some person said Curcumin is the active ingredient and in some countries that is what you buy. Anyway a cool thing is that the poultice of it can start tingling in ten minutes or so. You can take a Band Aid, put some Neosporin on it, sprinkle with turmeric and apply it.
Are yours extremely painful?

No pain, just pus! I'm ordering it tonight. No pain makes me lean toward oral turmeric rather than poultice. I going to try. Already dosed up on zinc, I take a daily multi tab with 100% in it?

This is my left armpit today. Three big lumps and really sore skin again. One of the lumps weeps but offers no respite when it does. Bloody bank holiday I want turmeric to arrive!

Ouch! Putting turmeric on externally can get results in ten minutes or so! Any health food store would have it. Indian groceries do too, by the pound, really inexpensive.

I never knew it was multiple small bumps, I thought it was bigger ones, and only a few.

My underarm is hurting just looking at pic! Honestly!

I don't know why the skin gets so reddened and rashy, but definitely lumps too. Despite it being 13 degrees I am walking round the house in vest top to keep it aired and cool. I've got a small jar of turmeric here (for cooking) so seeing as it's so bad I'll take a bath later and do a poultice. Ibuprofen working a little too!