Hidratenitis Suppurativa. Help.!

[AbsolutelyLoveIy]

I think I’m developing this horrible disease and have some questions if anybody has any experience? I thought I might be more likely to come across the right folk by posting on a fast moving forum. I’ve been looking up info on Reddit but not really finding what I need and appointment a week away 😩

Currently with three boils in my armpit 🔥

I developed it when I was 9 (very young, very unusual) my brother developed it in his late 20s.

I have had various treatments including surgery.

Happy to answer questions here, or you can DM me.

One thing I would say is go to your GP, there are other things that can cause boils, including diabetes so it's best to get them ruled out first.

thanks so much for replying. I’ll answer her in case anybody ever needs similar info - it’s very hard to find people! GP thinks it’s that and referral app is next week

questions!

1. doc thinks repopulating skin micro biome would help. Apart from diet and probiotics - how.
2. Can you tell if they’re tunnelling?
3. is there w link with autism? I’m autistic as is my son and he also has similar although they’re on his chest and he’s only 9
4. when the actual boils are present how are they best ? Ive been doing hydrogen peroxide and my sulphate and nothing seems to draw them out
5. has diet ever helped? I’m pinning all my hopes on that

Thanks so much

I've not been told this, tbh a lot of the treatments, antibiotics, creams, soaps etc are probably more likely to damage your microbiome I would have thought. Is this a GP or a dermatologist? You need a dermatologist.

Tunnelling usually happens much later, years after symptoms first develop. If you press on one area another area will bulge because the fluid had moved.

Neither I or my brother are autistic, I was told it is genetic though so you should take your son to the doctor.

Covering them helps as it relieves some of the pain, stops them rubbing and you get less pressure. Magnesium sulphate paste can help draw them out and make them burst quicker which hel6with the pain. I have been prescribed hibiscrub to wash with and dalacin, which is actually a treatment for bacterial vaginosis, to put on under the dressings. I also have long term antibiotics. The combination of these things really help.

I don't think diet has ever helped, but losing weight did a little bit. My mother insists the homeopathic "doctor" she took me to, who put me on a wierd diet helped, but I'm more inclined to believe it was placebo, chronic conditions ebb and flow, you tend to try anything when it's at its worst so things can only get better.

Surgery did help and I am awaiting some more, but this is a drastic solution best left for if it gets really bad and persistent in the same area.

The best advice I can give is to keep on top of your mental health, it can get you down and make you feel shit, don't let it get you down.

I'm not sure if this link may be of use, I hope so twitter.com/HSConnectOrg

Also twitter.com/hsheroesca

A relative suffers really badly from HS. I've never heard of a connection with autism. They've found that many GPs are very unfamiliar with HS- and even consultants seem to using them as a guinea pig for different treatments. Relative has been told they'll always have it and it's just a question of managing it with different treatments (creams, soaps, antibiotics and surgery). They've found the strong side effects from some medications are more painful/difficult to manage than the illness itself. It's a really difficult condition to live with, I hope you have it more mildly than my loved one.
I've read on some blogs that some people try different diets etc but my relative hasn't done that, although I wish they would (they're underweight, not overweight, incidentally).

I was told I'm suspected of having this as I get a lot of abscesses and now get them in my groin area.

I took a course of lymecycline last year which helped but I'm getting some small sores still treated quite easily with magnesium sulphate and I have hibiscus scrub I can use too.

I have had it for 25 years now
Groin - never really causes any issues. Yes they're sore but they pop and heal
Armpit - I've had surgery and touch everything, been clear since

There's no cure but lots of stuff you can try, doctors will say lose weight and stop smoking if you do. I use hibiscrub or dettol soap on affected areas and that's about it really. I only get doctors intervention if I really need it

Currently
on metronidazole for, yet another, HS outbreak either side of my groin/general vulval area (sorry for tmi). This will be my 5th course of antibiotics since December and, in 2 weeks time, I’ll be having the abscess bed in one side of my group excised and fully removed as I have an open wound (rather than a tract/tunnel) which is forever exuding pus, blood and serus fluid. GP ha gone for a long course of antibiotics so it’s less likely to be infected when I go for surgery, in case they try to postpone again - was supposed to have surgery 6 weeks ago but got Covid just before Easter and was not allowed to.

This may help - www.hs-foundation.org/

Consider asking for a nose swab to be done. I was misdiagnosed with HS at 21. After months of boils that I was told I would suffer with forever, I was separately treated for an (apparently unusually virulent) MRSA infection in my nose, and miraculously have never had another boil or abscess since. Of course I'm not suggesting HS isn't real, and you have my sympathies if that is what you've got. But there are other possible causes that you might want to rule out.

From what I understand Hirantenitis Suppurativa is an auto immune disease, therefore needing biological treatments to manage and control.

Hi and thanks for the replies. I’ve got myself an appointment so hopefully will know what’s going on. From what I can see much of it can be mitigated by taking probiotics, avoiding dairy wheat and sugar. Let’s see 🙄