I've Just been Diagnosed With HS

I have had HS for 40 years or so. It first hit my groin, with an awful smelly discharge and acute discomfort, in my mid teens. It coincided with acute cystic acne (talk about a double whammy), so doctors just said it was a manifestation of the acne. It moved quickly to both armpits, with the same smelly discharge and pain, so by the time I was 20 I was leaking bloody smelly pus from both armpits and my groin. Despite very many visits to the doctor and later consultant, the condition was never diagnosed. In fact, it was never looked at until 2004, thirty years later, when I was put on a course of Roaccutane for my severe acne and the consultant had to give me a thorough examination. Even then, he only examined my armpits, and took my word for it that my groin was as badly affected. He didn't tell me that it was HS, only a very severe form of cystic acne; and he is a dermatologist, so he had no excuse.

I was eventually told what I had last year by an excellent Consultant, who basically told me that I had an unpleasant disease which couldn't be cured and only occasionally responded to antibiotics. My affected area is too large to excise, and anyway, any scratch or cut I have always, always becomes infected, so I know surgery is not an option.

The infection has recently recurred badly around my anal cleft, so I am restricted to dark clothing to mask the bloody pus discharge. I need to put a towel on the bed when I sit up and read, and each morning wake to bloody sheets. Thank God I have a loving wife who, apart from the odd moan about having to replace sheets pretty regularly, is very supportive.

But, many years ago I became reconciled to the condition. I was not a bad or evil man, so I wasnt being punished. It is/was just an unfortunate medical condition which is relentless.

Sh*t happens, and it's happened to me, so I feel it's no use whining about it, I just need to lead a good life keep as clean as I can to stop the smells.

my husband has the same problem!! I have been looking everywhere for something that might cure it. We have been to the derm. and several doctors, they say there is nothing they can do but put him on antibiotics. Bull Crap... I am sick of seeing him in pain all the time!! They can clone animals but cant come up with something that is putting our hard working men on their butts because it hurts so bad to move?? The problem is there are not enough reports of the problem for them to think twice about it. MEN its time so we can let these doctors KNOW it is a Very Big Problem!! Please we have tried everything!!!!

hi hunny

i have just had one of my recurring lumps burst on me again this afternoon...

like you i canteven put my arm down its that painful

have been looking on the web and have come across h.s,,,

i think i will be going to my docs on monday...this condition is happening to me every week...

help..!!!!

lesley

[quote:bc58717af5=\"juliauk \"]

I'm julia i'm 30 years old from the Uk harlow essex, well i had a huge mass of lumps come up last friday i have sufferd with these things for years i had been back and forward to my doctor he sent me for bloods and just put me on anti biotics.

well finally unday night after 15 years of suffering i went to the Emergancy room because i was in so much pain iacould not put my arm down it was jsut pure agony

after being there for 20mins a doctor came in and said how long have you had these because they are the worst i have ever seen in amy years

my lump's this time was 5cm long and about 3 4 cm wide i was in pure agony

i told the hospital doc what went on with my doctor and he was so shocked he never diaognosed me sooner

im so lost and i know there is no cure for this but i'm so glad to have finaly been given a name for what i have i feel dirty because of the leaking and the smell its jsut awful and makes me feel in human

i hope anyone who is suffering would like to talk as i dont want to be on my own with this

although i have a loving hubby and kids its nice to talk to someone in the same boat

love andbest wishes Julia[/quote:bc58717af5]

know exactly how you feel i have searched the net continuously looking for anything to help relieve the pain it really sucks seen the dermatolagist he palmed me off with long term antibiotics or have the glands cut out resulting in possible loss of movement in the arms at my age with five young children not an option into the bargain the side effects of the antibiotics are worse then the disease then they gave me a wash to wash with when i read the label it states very clearly not to put on open wounds and is actually designed for pre surgery scrub downs (disinfectant! tw*t) so i know tell the doctor what antibiotics help a little augmentine the higher doses help a little not a lot mine dont actually go down anymore i have them under both arms in multiples in the groin under and on my breasts and on my stomach looked at some of the natural remedies in new zealand and am seriously contemplating it because i cant live like this im scared to declare it to anyone wont wear short sleeved tops one because people stare at the scars initially and the the leaking mass and then the disgusting smell that never goes!!!!!what can we do weres the help??????????

Hi Julia,

I've recently been 'officially' diagnosed with HS also, having suffered with the symptoms since 2007. I'm 40 and also living in Harlow. Your post cuaght my eye as you live in the same area. It would be nice to be in touch with someone going through the same thing as me who is local. Would be interesting to compare notes also.

I've gone a whole month now without any lumps

But I've had the experience of having them operated on - PAH. I soooo NEVER wanna go through that again. My friends and family are very sympathetic but they have no idea what it feels like or how bad it makes you feel about yourself. I've kind of got my head round it now but its a horrible, horriblle nasty disease.

Nia

I have only recently been diagnosed with HS after suffering for years I have been to the emergency doctor loads of times. The worst left me with a 4cm scar on the inside of my leg. The original lump was 5cm by about 3cm and it was so bad I couldnt sit, stand anything. It was agony, I think a lot of people dont understand how crippling it can be. The problems dont end when the boil bursts as mine often refill I am constantly suffering a high temperature and feeling ill. I'm still thinking about the surgery I'm worried about the side effects i.e. lymphodema etc. I think more people need to be educated about this condition so that they understand the level of disability you can suffer.

I have been suffering with HS for at least 10 years, it started in my late teens with a giant boil in my groin, which had to be \"burst\" at the hospital...and this has continued with episodes of large boils, small lumps and bumps ever since. The worst was one that came up whilst i was on holiday in Thailand, and after a 13 hr flight home I had to go straight to A&E as it had turned into a blood blister the size of a golf ball.

I have seen 2 specialsts, and have tried various antibiotics, the dianette pill, topical solutions, but nothing seems to work. The specialists at the hospital didnt seem to understand how this has crippled my life. As soon as I saw the doctor I just burst into tears. All they could offer me was a medicated wash and yet more antibiotics....i go back again in March.

I suffer mainly with the groin area, but in the last year I have started to get them under my breasts and on my tummy...I cant believe it seems to be getting worse, not better. I am now 33 and cant have a relationship as I dont want anyone to see the scars on my thighs.

I cant beleive how many people on here are going through the same and yet no-one can seem to help or cure this.

The only person I know to have completely gotton rid of them all together was a friend, she had to have a hysterectomy, and since the op she has not had even any. Surely this cant be the only cure?

kaz x

hi im rachel from brimingham aged 23 i have recently been diagnosed with hs after 5 years of having constant reoccuring boils the doctors had given up on prescribing medicine to try and treat them i had a huge painful lump under my arm so went ot a walk in clinic rather than my normal doctors and straight away he gave me info on this which was a great help i had to have the lump removed and had several months out of work as it took so long to heal that was 3 months ago i now have another lump under the same arm just above the scar from my previous lump my employers are not very understanding as they are totally oblivious to this condition and have actually warned me that im at risk of losing my job if i take any more time off!! the doctor told me it may be a genetic condition and thats true in my case a relative has had to under go extremely painful surgery having sweat glands removed to try and control and reduce the amount of lumps she has lets hope some proper research can be done in hs which will actually help sufferers and hopefully eliminate it