Any hidradenitis suppurativa sufferers able to offer advice?

[Lavender14]

I have been told by the gp I have suspected HS. I've always had issues but never anything major. But since having my ds I have been in a constant flare up for the past 8 months and have open wounds now on my panty line that I can't seem to get healed despite 7 courses of antibiotics and a course of steroids. I'm now being put on a long term course of antibiotics and if that doesn't work it'll be a dermatology referral. But I'm wondering if anyone has any more advice on how I can stop it from flaring up and help healing?

I think there's a hormonal element because I had absolutely nothing when I was pregnant but it started as soon as ds was born. I would normally only flare up around my period and I've gone back on the mini pill about the same time as this current flare up started. Has anyone else found a link between the pill and hs flaring up? Any advice that's compatible with breastfeeding would be so appreciated I'm at the end of my tether with it.

I’ve had it since I was 11 and I’m 51.

pregnancy I was free of it.

i am hormone free now and it is getting better as I head into menopause. In the years that have been between now and then, all I can do is tell you what works for me as best as I can fathom.

don’t do any brutal hair removal. Don’t wax or close shave or cream or anything. Use a battery razor which isn’t as close. If you go back to seriously close the flare ups will be worse.

wash the areas after shaving and during a flare up with hibiscrub. You can get it on Amazon. Use it anyway if you need to but it can be drying.

dust the areas with a talc - cuticura medicated talc or even baby talc will help - keep the areas sweat, stress free and dry. Breathable clothing. No pants at night - keep areas
of skin breathing.

anti bac deodorant helps - Mitchum is the only one that doesn’t break me out in a rash which then gives a horrible flare up.

look at nightshades. For some people peppers and tomatoes really aggravate.

take a turmeric supplement - makes a huge difference for me.

Thanks so much for this, I haven't touched hair removal at all for a long time because it just is not worth it! Really curious about the idea of lazer hair removal as some people seem to have found it resolves things for them but it's so expensive to try!

That's interesting about the tomatoes and peppers I eat those daily, I'll need to look into that! (Really hope tomatoes aren't the culprit though that would affect all my cooking!)

Will look into turmeric as well though I'd heard its not advisable during breastfeeding but will definitely revisit!

You’re welcome.

any friction - elastic knicker edges, raw bra under bands, etc - they can rub a bit of skin then that can cause an abscess/boil type thing.

so buying things a size bigger helps, especially pants! Getting sweaty - bum cheeks in pants, then jeans for days means that area is susceptible. Summer is best for me - loose sleeved dresses, breathable stuff. Winter in layers can be worse too.

and stress. And generally not taking care - vitamins. Water. Etc!

I had it badly from 28 ish on and off to menopause. If you smoke stop. I had a number of surgeries for removal of particularly inflamed areas. Under arms and groin area . Don't use talc near groin as has been linked to vaginal cancer. I saw a number of drs over the years and took heavy duty antibiotics. It's a bugger to live with .

What meds are you on?
I got rid of my HS - or rather my specialist did. It's very unusual to get rid of it. I consider myself immensely lucky.
Other than the meds I took zinc supplements and I second hibiscrub.

You absolutely should see a specialist- most GPs do not know enough about it.

The powders I suggested are talc free. Cuticura talc is talc free, as is medipure, both available on Amazon or in boots.

Lush do a lovely one called ‘silky underwear’ which is also talc free.

I do find any talcum powder helps. I’ve discussed this with the bupa dermatologist I see for my HS and he has said there is not enough evidence to link the cancer concerns anyway. But there are talc free alternatives if you wish to use them.

At the moment I'm on a 3 month course of fluloxicillan. I think they'd prefer to give me something different but it's not compatible with breastfeeding and I don't really want to stop just yet, we've worked super hard to get to this stage and im just starting to feel relaxed with it. Gp has said the next stage after this would be a referral to dermatology as I've had an open wound now for 7.5 months that I just can't seem to get closed.

Is the hibiscrub safe to use in the area if you've open abcesses?

30 year HS sufferer here and no antibiotics have ever worked for me - the best advice I can give is when you have a boil or even when you can feel the start of one - take 800mg of Ibuprofen (2 x 400mg) tablets - I done this purely by accident once and it was amazing- it will reduce the boil significantly and cause it to burst before it gets too large & painful. Then use diluted Hibiscrub on it.

I don't have HS but a friend has done IPL hair removal at home with a device that cost about 70 and says it has improved things massively as obviously the hair follicule isn't irritated buy the root pushing through.

Obviously you have to shave before but her underarms look completely different, just dark marks left by previous outbreaks, but no lumps, boils, or anything just smooth skin.

Viridian do a “Mother and Baby” probiotic powder which is Lactobacillus Rhamnosus GG strain of probiotic which is especially good at reducing any digestive symptoms associated with antibiotic (I can’t remember if it’s the only strain suggested to prevent cdiff or specific to fluclox- I took it when on Fluclox and baby had some too).