Hidradenitis - anyone got any experience?

[Bufftailed]

Does anyone have experience of this? DD has just been to dr with a few lumps (we thought cysts, ingrown hours) and came back saying dr said is this. Really going nuts with worry after looking it up. Have organized to talk to Dr myself. DD 16 and happy with this. Would welcome any experience. DD has sworn me to secrecy so can’t chat to anyone else.

I’ve had it for more than thirty years unfortunately.
it can vary in its seriousness.
it will be of no use me telling you the worst of it because your DD may not have the same experience.
it is a lifelong condition which has no cure.
it took me years to get formally diagnosed after many flare ups so I’m quite surprised your child has been diagnosed so early.
does she have any pain in the affected areas?

I suffered with this as a teen and then on and off as an adult getting a lot worse after the birth of my daughter. I had repeated visits to the gp who was not at all bothered until I broke down crying and asked me what I would have him do!
I asked to be referred to a dermatologist. I told her I thought I had hidradentitis and she agreed immediately.
I was put on a treatment plan with some hits and misses but now am pretty much clear with only the odd appearance that is now completely manageable.
So, I’m trying to say, there is hope and she should not feel embarrassed or ashamed as it’s not a result of poor hygiene and she’s not doing anything wrong. Hopefully she will get treated and get it sorted. Hope this helps.

It’s not as petrifying as it sounds! You can manage it easily with a body wash (hibiscus) and the odd course of abs. Or take acne abs daily so you don’t have eruptions.

I would second the hibiscus body wash, it can help to keep it in abeyance day to day.
Also second the thing of not feeling ashamed.
I spent many years thinking I was ‘unclean ’ and didn’t say I had it to anyone outside of my family.
it’s being talked about far more now.
There is no shame in it, any more than any other skin condition

Do you guys actually mean hibiscus? Or is it autocorrecting hibiscrub which is a really common treatment option with HS? Sorry if I’m wrong!

Thanks so much all. I was v surprised too. They have had 6 cysts/ abscesses in the last year, but some small. We assumed ingrown hairs or something so only just went dr wirh last one which is v big and drained. It has been painful and DC waa sore when walking one morning. First visit to dr went straight to this diagnosis, maybe a positive. Now has topical antibiotics and oral for a week to clear latest flare.

Having read a bit feel this might warrant a referral to dermatologist. Will discuss with GP.

Normal weight, no smoking but does shave in area, so maybe stopping that can help. Will get the hibiscus wash. Thinking back I had some large lumps which drained for a couple of years early 20s, so maybe I had it but never knew. Been plagued by cystic acne so my heart goes out to all of you had to deal with this, skin conditions can get you down.

DC seems unbothered at the moment which is a relief.

Any other advice welcome. Did you see a dermatologist?

What was the treatment plan if you don’t mind me asking?

Thanks for clarifying. Dr has recommended hibiscrub which I got straightaway. Good to know if hibiscus wash is a thing!

Because the effects were so debilitating, my plan was long term antibiotics and lotions/ soaps that were prescribed. I had a topical lotion also to apply to the specific area. Looking back it was quite an intense time and overall I was treated for around 18 months or so. Then I came off of the antibiotics and kept up with the lotions etc and now just manage each episode. It slowly calmed down for me but I understand it doesn’t always.

I’m glad it finally cleared for you.

It might be worth having a little first aid box handy with things such as dressings,magnesium sulphate paste and some ibuprofen.
My flares ease with the use of vicks vapour rub and using head and shoulders classic clean shampoo as a body wash.

Thanks. How do you handle it when an abscess drains? Ie should you dress it?

Yes - I do, I now take antiobiotics (Lymecycline) twice daily for it, with another course of a different one (clarithmycin) on hand for flare ups. I use octenesan for washing. It's great she's been diagnosed so quickly, it took me years

My 14 year old has got this. She got given a course of antibiotics that cleared it up. Now she washes armpits and inner thighs everyday with hibiwash from boots and it keeps it at bay.

You absolutely must see a specialist. Most GPs do not know much about this.

I had this in my 30s and after a year, on some extremely strong abx, it went away which is unheard of. I count myself as very lucky.

My specialist who was not from the UK also said it was vital to take zinc supplements and I did. He said this is under recognised and under valued in the uk.

Getting on top of it asap is crucial.

Thank you. Seeing GP in two weeks and will push for referral. Not sure if they will insist on seeing how topical antibiotics go first. 6 flares in a year seems quite a lot and this last one is causing pain. We are near a specialist HS centre.

Yes I do. My one and only visit to GP, due to really sore ones in my armpits she told me what it was, that she had seen worse that require surgery (which felt very unhelpful) and to squeeze them when they are ready to pop. I’ve not been back since but I get regular really painful ones across my groin and multiple ones at same time. Armpits have since cleared up but the groin ones are not great. I really need to go back but my one and only visit really put me off. I am overweight though and do smoke so need to do something about that part to help myself.

I just cover the abcess and change the dressing after a shower.