OK I have held my tongue for too long now.This so called...

Posted , 2 users are following.

OK I have held my tongue for too long now.This so called NHS has and is still letting us all down.I began to show symptoms of HS when I became sexually active at around 14 years of age.I was diagnosed 2 years ago at age of 35.This diagnosis after at least 8 different GP's and some 20 or more casualty visits (what a joke).I was only diagnosed because I was due for surgery and was indeed told that it was an uneccessary operation as the surgeon diagnosed it.Ever since my diagnosis of HS it has been a constant battle to get the illness recognised.I FOUGHT FOR 18 MONTHS TO GET disability living allowance.I get mid rate care and lower mobility components.

The illness over a twenty year period has cost me some 20 jobs,many places of accomodation and two long term relationships..

I have had an open sore on my perineum for over 6 years now and constantly inflames and leaks blood and pus.This area has inflamed to the point that is all linked up with underlying boils at top of my legs.Recently there have been several new members of the boil brigade.I now have two open wounds in my armpit which smell foul (not disimilair to a chlorine smell) of which i am always aware of.Also I now have one on my ear which is distressing to me as the whole world can see it.


In this day and age when we can go to the moon its ridiculous that there is no cure and no real treatment.This is due to what I believe is complete failure to recognise this alledged RARE disorder.It is my contention that this is not as rare as people think due to constant misdiagnosis.


(Sorry but as is our policy, the email and web address have been removed)

all my best wishes

Geoff "KEDSTER" Keddy

[i:dbf92f3392]This message was automatically imported from the original Patient Experience[/i:dbf92f3392]

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  • Posted

    i read your comments with interest, as i too have tried to get disability allowance and i was refused, i didnt appeal as i thought there was no point, my doc has advised me not to work, i have just had my eighth operation for this, would welcome any advice as to how to apply for this benefit again[/i]
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  • Posted

    I'll probably get the sack soon for all the days I've had to take off due to this mess. I've explained, in a jokey way, that unless I'm allowed to sit in the office, naked, with crushed ice pressed to crotch and armpits, it's impossible for me to work on days when the pain is bad.

    Sometimes I can't sit down; I tried typing whilst standing, but it hurt my back after a while. My manager has been ok with me so far, but clearly doesn't have an understanding of what it's like - although I've tried to describe the symptoms a little.

    I looked into disablility allowance a while back, and it seems like unless you're unable to walk, you won't get it for what we have. There's no 'able to walk without physical pain' category.

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  • Posted

    spacing out the web address

    so it doesn't get censored

    [in theory]


    This is an E-petition asking the UK government to fund research into HS.

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  • Posted

    It didn't work.


    Ah well, maybe they'll let it show up once they realise that it's a valid site.

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  • Posted

    Hi I too have hs have done now for 10 yes the pain is excruciating the embarrassment is depressing to the point it effects myconfidence my relationship basically everything I feel like one big giant scar constantly teetering on the edge of depression n pain sad
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