First of all WOW!! I didnt know that this support network existed and even shocked to know there is a recognised charity too. Why have i never been told this??!!
I am Emma 28. I was diagonsed with HS 15 years ago and been back and forth to docs, nurses for dressings and hospitals when i have massive flare ups which swell up and irrate my whole upper arm.
My HS is mainly under arms have had groin ones in the past, but nearly constantly have problems under both arms.
It would be nice to talk to people who have HS and understand what i am going through. Ive NEVER met or spoken with anyone with it and would be lovely to get feed back on what people think.
The answer to my questions come from docs who just look it up and say unfortunatly there is no cure and we dont know enough about how to help it. I just get given really strong antibiotics which end up making me feel worse.
Ive been offered several times an operation which theyve said would be a 50/50 chance of working. From what i understand its removal of the sweat glands and it would require a skin graft from my bum or thighs and be left with a long wound to heal. Putting myself through all that for a 50/50 chance is not good enough!!
Is there anything at all that people have found that makes it worse or what would be nice if anyone has found anything that makes it better??
Why and how do we have this condition?
Im currently 5 months pregnant and having a really bad time of it and if anyone has any ideas which dont involve medicines that would be great!!
Sorry for the overload but so happy to find people who would understand all this!