does anyone else have Hydradenitis Suppurativa? any tips?

[CrowleyKitten]

quick summary for the curious. it's a skin condition that generally involves boil like sores under the skin, usually in areas like the armpits, groin, under the boobs, back and inside of the thighs and so on. and they tend to track to the surface, rather than form a proper head.
it's SO ITCHY it's sore and painful. some days it can hurt to walk from them rubbing on your inner thighs, or hurt to sit down. some of them form in very personal areas, and they are extremely uncomfortable. I am covered with scars, and it's just so wearing down.

the best things I've found to help it are vicks vaporub (sounds like it would sting, but it's weirdly soothing) and a jock itch cream I've found that actually does soothe it really quickly. think it has a lot of thyme oil in it.

just wondering if any fellow sufferers have any tips for things that work for them.

Self diagnosed and miserable. I gave a current wound that just won't heal and has been leaking pathetically for months

You have my sympathies, I had it for years and as I've hit early menopause, things have finally calmed down.
Its trial and error I found; magnesium sulphate paste to draw out a big abcess, vicks to soothe them, Epsom bath salts and hot towels definitely helped.

Do look at diet, nightshade food items flare cysts.

Meds wise, antibiotics help chronic flare ups but request a derm appointment and have a chat about spironolactone.

Wishing you the best!

sorry to hear you’re going through this! I’ve had HS in the past, I also have PCOS and the other hyperadrogenism symptoms that come with it (According to some research, there is potentially a link between PCOS and HS).

now it may have just been a coincidence but my HS has gone fully in remission since getting laser hair removal. There is medical evidence to suggest laser hair removal can help too pubmed.ncbi.nlm.nih.gov/38769894/

Admittedly, I never had HS all over the body it was always just in the underarm area but I remember some particularly bad flares when I genuinely couldn’t fully ‘rest’ my arm down/flat by my side as the cyst in my underarm felt almost the size of a golf ball. Constantly felt the boil/cyst there, couldn’t put on deodorant.

Also, it may sound a bit crazy but I do remember during particular bad flares was at the time I was eating a lot of bakery pastries (especially croissants). There was a very small medical study that found some HS patients reacted to brewers yeast, and excluding it from their diet helped them.
pubmed.ncbi.nlm.nih.gov/23891479/

Clindomycin and zinc.

See a dermatologist who specialises in it, even if you have to go private.

Mine flares up in different places at different times. My armpits groin and buttocks have been badly affected and I have lots of scarring.

My armpits have responded really well to using a natural deodorant. I was using Wild for a while which really cleared them up but it didn't do well at deodorising. I switched to Fussy which has a probiotic and it has worked really well for me. I still get flares but they are nowhere near as bad as I used to get.

Interesting about the Vicks, I've read that a couple of times now. Do you use it as a topical treatment in flare or as a preventative?

My dermatologist has prescribed me hibiscrub to use, octisen wash ( I carry MRSA on my skin after contracting it from ICU)
and dermol cream to apply.
I also have had a few ultrasound guided drains and a GA removal for one that was bordering sepsis ( I've had sepsis x 2 before)
To be honest I'm sick of it - it's getting worse.
I obviously have flulox or co+amoxaclav with a systematic infection

I had this for almost a year continuous boils and spots appearing down. Below in thighs, bum, vag crease.
Was awful!
I tried many different things but one thing that has kept it at bay and I haven't had a spot for about 8 months is using aqueous cream to wash down below.
ONCE I used shower gel and it was like a volcano eruption I hated myself for doing that. It definitely triggered something. It took months for me using aqueous cream for those to finally go and I've learnt my lesson. I never go without it now and I haven't had a boil/spot since.

What are you using to wash with ?

Zinc as a dietary supplement or a topical cream?

I've been putting up with mostly low/level symptoms but would love to be free of flares!

I meant to add that I found exfoliating the affected areas regularly helped to minimise the number of flares ups I had.

unfortunately, mine seems to have come on as I'm in my 40s. so it seems more likely to have been triggered by the approaching menopause, rather than likely to get rid of it. but I'm glad yours has eased off. it's just so constant and demoralising, isn't it.

mostly people use it to draw a stubborn one to the surface so it can drain, or when you get that horrible burning itch. although it tingles, it's quite a soothing tingle, not like that infamous mint shower gel :P

I tend to use bath salts, and I've been prescribed hibiscrub, hydrocortisone cream and antibiotics. it does tend to feel a bit better right after a bath, and the heat (I am a volcanic bath person) does help to draw the stubborn ones out.
usually once they open, I'm lucky that they heal over time, but they're so painful when they're not near the surface. it's just like a hot pressure, and feels like ball bearings or marbles, heated up, and seated under my skin.
some are more stubborn about healing than others. the ones under my arms (not quite armpit, further out) under boobs, and under buttock ridge are VERY stubborn, and it's just a case of having to keep draining them, and wait. they're the ones that tend to scar badly when they do eventually heal.
the ahem. Labia ones have never really gone away. I think that they're the same ones, but they're sometimes active and sometimes not, but they've never entirely gone. I think the pocket remains, but the infection comes and goes, as there's two, and they're always in the same places when they flare up.

I was really lucky that the doctor I first saw about it knew quite a lot about it, but whenever I try and get an appointment to see the same one, reception fob me off, and just try and book me with whoever is available. even though I've said I don't mind waiting, I just want to see the same person.

also, a massive thank you ladies, I'll be looking into all the tips and see if anything works for me.
if anyone is curious, the jock itch cream I find really soothing is called Natures relief Co. jock itch cream. it's definitely the best thing on the itches for me.

I've had it for about 20 years, it flares up and I get recurring boils in VERY delicate places 😥

Unfortunately there is no cure, no one is sure of the cause and treatments are just there to manage it

I was on long term antibiotics for a few years, which kept the boils at bay - but you can't be on antibiotics for life and my GP made me stop taking them so the boils are back

I've recently lost 5st (with WLS) and they haven't gone away, so I don't think it's weight related

It's also worse when I exercise as the friction brings the boils out

It's a nightmare honestly, I absolutely hate this stupid skin condition!