Hidradenitis suppurativa

[Mitchywoo]

Afternoon all.

Does anyone have much experience with Hidradenitis suppurativa?

I have had it very mildly for years and it’s never been to the point I can’t get on with normal activities.
but my recent flare has been awful. I felt a small bump on inner thigh on Friday but by Saturday it was about 3inches round (flat) but no head to it. Just under the skin.

ive mostly been able to take painkillers and get on but today its gotten the best of me. I think its gone down abit but the skin around is swollen and inflamed.

I haven’t got through to book a GP appointment yet but have sent off a e-consult.

But in the meantime has anyone got any tips? It’s hurting to walk and I have to do the school run soon :(

Yes, I also have this and it's awful!

You will find that what works for one person doesn't work for another.

I usually end up on Flucloxacillin which I find helps bring them to a head and burst but not everyone finds them helpful.

I ended up getting referred for laser hair removal on the NHS which has definitely helped but not cured it.

When you do speak to your GP, asks led to be referred to dermatology as there are long term antibiotics you can take to try prevent them.

Best of luck and I hope the pain eases soon!

This might sound crazy but Head and Shoulders shampoo will help ease the flare ups. Just use it neat like a shower gel. It calms the redness up overnight

Thankyou!

Im not sure this one will come to a head. It’s very solid and there’s no obvious “point”

I normally do use head and shoulders as a body wash and find it has reduced how many I get. It’s just now I seem to get bigger ones instead

@Mitchywoo I had stage 2 HS for about 18 years, with constant flare ups on my inner thighs/buttocks

Antibiotics helped a little, but nothing else really did anything for me - I'd lance them myself where possible to drain them and then smother them in sudocrem and keep them covered as friction made them worse

I had weight loss surgery in 2024, and have lost 10 stone and thankfully the HS has gone into remission - I have other skin conditions that also seem to have eased with the weight loss/healthier eating

Sorry I haven't got much advice, apparently a really hot compress is supposed to be good for drawing the pus to the surface so the boil can drain

Good luck

I have it. Generally I just ignore them unless they’re black/purple (full of blood and ready to burst) or with a head and I pop them
i use germolene, dressings and hot baths
doctors if they look more than golf ball size or look iffy as I’m immunocompromised

This won't be an immediate help for you but I find if I wash with Hibiscrub and then apply Clidamycin lotion (a topical antibiotic) as soon as I get a flare up I can get it under control at home pretty quickly.

In this instance it sounds like you need oral antibiotics to get the acute infection under control but when you are speaking with your GP, ask if they can also prescribe you the topical to have in your medicine cabinet.

All the best OP, it's a miserable condition!

My husband has this pretty severely, it's horrible to see how much pain it causes him. He's now on biologic injections after trying various antibiotics although those don't seem to be working. Hot baths help a bit but nothing much else

Thank you for your reply!
Ive popped a few mild ones before (I know I shouldn’t) but this one is just solid and under the skin so nothing to lance!

I am trying to loose weight but I have PCOS it’s got worse since I went on the pill briefly 🤦🏼‍♀️

hopefully the gp gets back to me soon

Thankyou for replying!

Yes I think you’re right with the antibiotics. Just trying to get through to the GP is a nightmare.

my friend gave me some Clidamycin to help so fingers crossed that helps

I’ve been living in the bath as the warm water does help and it helps take some of the weight and pressure off!

It’s very under the skin with and is slightly pink but it doesn’t look bad. Just very solid under.

can I ask what the Dr does with more iffy ones?

I have this condition, mildly, too. In the end, I had surgery on each side of my inner thigh which has been a huge success. I am lucky to have BUPA via work which covered it. I think this was quite extreme considering it is mild for me, but the bumps would rub against my pants which was awful. I love running and it was holding me back. Oral antibiotics did sweet FA. Good luck, it's draining and it made me feel sad.

I’m glad surgery helped!
I usually can cover them and get on with my day but this one seems very stubborn! The surrounding tissue has inflamed now too so I’m waddling around like a penguin 🤣

Antibiotics usually, I’ve had incision and drainage before and plastic surgery on my armpit

Try hydrocolloid plasters

I did on Sunday night. And kept it on over night and throughout the day on Monday - by Monday night the swelling had increased around the bump 🤦🏼‍♀️

It will do - it will draw it. Keep it on as long as possible

I have hs and I swear by vicks vapour rub,it's all I use. The menthol helps ease the pain.

I used hibiscrub when I had a flare up but I eventually had surgery of three areas I had on my groin and labia. I was on a waiting list through the NHS which offered me an appointment with a surgeon after about 18 months. I had it done privately in the end.
I did not have any on my underarms which the surgeon said was unusual as many people with this have the cysts on the underarms, but I had lasered mine and so there were no hair follicles, and not HS. You might find laser treatments help.
on another note however, although I did get the occasional lump or bump since then, I have not had a single one since starting on a glp .

I have this too. In my groin area.
I used to get a flare up at least once every 6 weeks. I would wait for them to burst or go away on their own, it was a painful time but when they burst, the relief was tremendous. However, a few years ago, I had so much scar tissue from the regularity of the flare ups that my GP told me I had 2 options left to me.

One option was to have the scar tissue cut out, and when I asked if that would resolve the issue, he said no, they would just appear next to the scar tissue.
I asked what happened then? He said they could cut that scar tissue away too.
I could see myself ending up badly scarred from all of the cutting, so I asked him what the other option was.
He recommended washing the area daily with Octenisan wash.
Since then, I've had only 2 incidents in approximately 6 years, and the last incident was at least 4½ years ago.
When I have had a flare up, I put some Octenisan on the lump and leave it there, without rinsing and whether it has a head or not, it goes down within 24 hours.

Now, I lather up the octenisan and leave it on the area while I wash and condition my hair, usually 2 to 3 minutes, then I rinse it off and pat dry.
Octenisan can be bought over the counter in your local chemist.
It's a god send.

Also, I have tried the hibiscrub but found it irritated my skin and left me with a burning sensation even after rinsing thoroughly, so I stick with Octenisan.

I’m on 408mg of lymecycline daily and that seems to keep the abcesses at bay although the last couple I had only felt better once they ‘burst’. It’s an awful painful condition

I have this too, it started when I was 20 and I'm 33 now. Its mild, but painful and once I get a bump it lasts for months / more follow etc. Am covered in marks from it all. The gp was useless for me.

I saw a dermatologist who prescribed spironolactone, and since ive been taking it, ive had no bumps at all. Its also helped with my nodulocystic acne.

I hope it eases for you

I am prescribed 3-months course of Lymecycline at a time, as apparently you need to take them for that period. However, I am cleared up after a few weeks and I keep the remaining Lymecycline on stand by as it takes too long to get a prescription when it’s needed. I always ensure I have a supply, ready to take