Hello
Just found this community in regards to HS and wanted to give you my insights.
I have suffered for HS for 15 plus years. Long time I know. I have been on long term medication to hospital surgery and everything in between.
I wanted to give some knowledge on how am managing this.
Firstly I wasn't. It is a horrible thing which can put a stop to your life for some time. Saying this I can say it will not take over my life as it initially did. Don't get me wrong the pain is intense at time the constant medication nd change of clothes can be a nightmare but you can not have this Controlling your life. It was time to fight the unknown
Medication> I have been on so many different tabs it's unbelievable and at a point I was a testing ground for some medication. For this I can say try the meds if they work continue for abit but always remember these meds have side effects which can make other thing worse. I now stop all medication and only use antibiotics at the most needed time (when I can't mange and flare ups are extreme.. You don't want to get your body used to meds). I have heard of new methods but am afraid to be a test rat. Done this already nd it didn't work to well.
Dermatology: These guys for me are a waste of time. Don't know what to do but take pictures because they and their groups can discuss later and find prognosis. Also they will prescribe you meds on top of meds just to see which works. Everyone is different so one med will work for someone and not for others. I stop seeing them now
Surgery: I have surgery and it was the worst mistake of my life. (public region) After surgery it was Infected so I had another surgery. This time it went but after a year it reappeared and now I have a great big scar with the same issue on top of it. Under arm surgery worked on one side but not on the other so it was a hit and miss. Lol
Surgery will work again for some people but it will take you out of commission for a little while and it's not always guaranteed so please be careful.
After so many years of this (basically bleeding pus and golf ball sized boils and severe rashs) I decided to do it my way.
This is what I did. I stopped wearing tight clothes and heavy cloth underwear. This helped reduced heat and sweat build up.
I stopped smoking. This helped build my immune system and lungs.
I stopped eating crappy food. Takeaways and junk food helped me to sleep better at nights and less sweat come out. Also fixed my diet more vegetables and right time eating.
I started exercise this helped me get my dirty sweat out and eventually I didnt sweat at inappropriate times also created more of the right hormones which I didn't realised but helped me.
I wash my self properly and dry myself properly not leaving any wet patches where bacteria can evolve. I used a soap called Hibi Scrub. Surgeons use this for washing when operating. This helped so much around my groin area. Daily until it was managed then back to normal. Dry yourself properly I sometime towel off and then fan dry. I know excessive but it worked.
I reduced the time am around heat. For me when am hot my problem gets worse I stopped heat and tried to stay away from it. Sun it brilliant but not artificial dry heat.
These are a few thing I do to manage my problem. I hope it helps someone because I know the effevt it has nd the pain it can cause. I hope someday it will be curable but for know it can be managed.
Also please don't worry it is a problem but it will hopefully go away. I pray for everyone to have a healthy life. I hope I can help anyone who needs. Any questions let me kno and if I have any questions I hope you can help.
Peace
