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Diagnosed with HS a month ago: looking for help with how to cope.

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eef123
eef123

I had what was thought to be just one abscess in my right armpit drained in Feb. It wasn't healing so I went back to see my surgeon at the start of April. I was told I had more pockets of infection that needed opening and draining. I was then left with four open wounds to heal with daily packing. I am now left with just one My surgeon said I have Hidradenitis Suppurativa, I'm not entirely sure what the condition is and apparently i'm in stage 1. I have an appointment with a dermatologist next week so hoping to find out more then. I'm really looking for some help on how to cope? I'm at university and now living at home and commuting due to the dressings and aren't getting out to see friends as I constantly feel self concious of the condition. I feel so down and upset all the time. I also suffered from pinolidal sinus disease and had three operations to heal that between the ages of 14-16 which affected my GCSE's. I'm not sure how to deal with not feeling 'normal' and from what I have read the condition is chronic which scares me into thinking I am going to have to deal with this for the rest of my life. I'm new and 21 looking for some help and support of how to deal with this condition and any help would be much appreciated. 

0 likes, 4 replies

4 Replies

  • hypercat
    hypercat eef123

    Posted

    Hi I am sorry you have been diagnosed with this as it is a nasty painful disease.  It's good you are seeing a dermatologist soon.  No one seems to know the cause as it is an unfashionable and underfunded area.    I have been told smoking and being overweight could be contributory factors. 

    The good news is you have been diagnosed very early so there is a good chance it can be stopped from spreading to other area.  The armpits are the usual first place it shows but it can also begin like mine on the top of the inner thighs. 

    You are in stage 1 (ie in 1 area only) and the main aim at this stage is to stop it spreading and turning into stage 2 or3.    Aggressive treatment is needed to stop this ie being on long term ab's or strong meds like rouccatine.  The more it has spread the more damage done to the lower levels of your sin the more treatment options are limited.   It might not spread any more anyway as it is different for all of us.

    As you have found the way to deal with them is to seek medical help,  incise the big ones,  and pack from the inside so they heal properly.  Do not squeeze them or prick them (the big ones are too painful anyway!),  as this will cause more damage to your skin.   You will often find they start with a small red pimple with a small red ring round it.   The dermatologist can give you a cream which might help stop them at that stage.

    Some HS sufferers find they get remission from avoiding nightshade foods ie potatoes,  tomatoes - google it.  I have never tried this though.  Stay with us on here and we will help you all we can.   x

     

  • aussie76
    aussie76 eef123

    Posted

    Hi eef it's an autoimmune inflammatory condition.

    Dermatologists will try to treat the symptoms. I had double and triple doses of roaccutane but didn't help me. It does help some.

    For me the nightshade elimination diet has helped a loooot.

    I'm skinny and was affected badly... Being large is a contributor only as much as it makes your skin friction worse. People blame dairy (there's science behind that). I'm a massive dairy consumer.

    To control the flair ups try not to wear much polyester.

    Keep reading the community forums , it seems the best place for advice. There is a HS foundation website that gives lots of information and run by a man named Bill Danby who has looked at the science.

  • Ingoldsby
    Ingoldsby eef123

    Posted

    Hi eef123, It is good that they have dx you at stage one and not at  later stage when  more damage has occured. I am at stage one as well and I only have flares every 3-4 months and when I do have a flare it responds to antibiotics.  HS is casued by a lot of differnt things so everybody has there own triggers and cures. For me I have found that I am insulin resistant and high levels of insuline are thought to cause high levels of androgens which are throught to kick off the inflamation. I have converted to a low carb diet and I am addressing the insuline resistance  through life style changes. It is working well for me and can now eat nighshades in moderaton,  but you need to work out what is casuing your HS and your derm should help you with that.

    This is an interseting article regarding diet and HS.   http://www.eblue.org/article/S0190-9622(15)01990-8/abstract    

    There is also appears to be  strong link between HS and Vitiamin D  http://www.ncbi.nlm.nih.gov/pubmed/25512084.

    Good luck

     

    • aussie76
      aussie76 Ingoldsby

      Posted

      1000 times agree ingolsby. I can control it by avoiding Nightshade's, in particular potato.

      I wrote to Bill Danby because I drink a couple litres of milk a day for 30 years... But it alone doesn't trigger me (I need a potato to set it off). However... My consumption does put me in the right category. He couldn't comment on the correlation but knows others who say the same thing.

      Still no evidence here.. But I find Vitamin D is interesting... I also suspect potato's are involved there ... Providing the end product of vitamin D metabolism (calcitriol) and affecting the body's ability to metabolise it from D2 and D3. That is a far out statement by myself who doesn't understand these things. But being a computer geek I suppose I'm vitamin D sufficient.

      I haven't controlled my diet like you have but I can control the symptoms by avoiding Nightshade's.. (And possibly nuts and some xheese)

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