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I'm close to tears, how do I manage HS?

Posted , 4 users are following.

lilyyy1113
lilyyy1113

I'm 21 and am certain I began getting HS when I was 16. It really started to become bad at 18.

I'm seeing a dermatologist next week (waited two months for this appointment) and only had it suggested to me that I had HS (guessed stage II but I fear I have stage III right now) from a dr about two months ago after being misdiagnosed for years.

I have wounds that won't close, or close for a few hours and open again, for about three months. It hurts, it doesn't smell nice and I can't take this anymore. After researching different results from antibiotics and surgeries I've come to the conclusion that these aren't particularly successful.

My question is, what is there that is successful or somewhat helpful? I'm getting incredibly depressed about this all and have since I discovered what it was.

I've read tea tree oil can help, do you just rub it on the wounds, even if they are open?

Also read that turmeric and diet can help.

How can I help the wounds to stay closed and heal properly?

Is there any more information on how to relieve these Boulder-like literal pain in the ass things?

Sorry if this is all over the place I'm just at my wits end and want to get this into control

1 like, 6 replies

6 Replies

  • hypercat
    hypercat lilyyy1113

    Posted

    Hi this sounds awful for you and I do sympathise.  It is very good you are seeing a dermatlogist and should have been sent straightaway for a proper diagnosis.   S/he knows more about HS and should be able to advise you better.  

    Some people say cutting out nightshade foods ie potatoes, tomatoes etc.  helped control their symptoms,  others say tumeric.  I have not tried any of them so I can't personally comment.  I am fortunate that my HS is nowhere near as severe as many on here and I have been virtually in remission for the last few years but had a very nasty one on my stomach and am just recovering from one on my leg. 

    The pain is excruiating isn't it?   I find the only thing that helps me is to take ab's - doxyclycline but it can take a few days to have effect.   I did for years take textraclycline on a maintainance basis but found it didn't help.

    Do you know any triggers?  I found one of my biggest ones was stress,  but how you avoid that I have no idea.  

    As it Sunday the site is slow but I am sure others will be in soon to support and advise you.  Take care.   Bev x

     

    • lilyyy1113
      lilyyy1113 hypercat

      Posted

      I'm very keen to try turmeric

      Unsure as to what triggers are but I'll try to see if I can find them, thank you

  • hypercat
    hypercat lilyyy1113

    Posted

    Hi lily I think anything is worth trying as you never know what might help and it is often a process of trial and error. 

    The good news is that your dermatologist should be able to advise you on current medical treatments ie I know you can be prescribed rouccatine,  though it is strong.  

    I don't know about you but when mine are cured but with hard matter still in some of them recur again and again.  I have these incised by a surgeon under a local anaesthetic and so far none of these ones have come back. 

    I know for extreme cases plastic surgery can sometimes be an option and I had a friend who used to get loads under her armpits over many years.  It was so bad she couldn't raise one arm due to scar tissue.  She had the plastic surgery and on the whole is pleased with the results.  She doesn't get any more there,  but it doesn't stop them spreading to other places.

    My dermatologist that there is a lot more they can do if you are only in stage 1 ie confined to one area,  but the problem with this is by the time most of us get diagnosed it has spread.  Mine has from my upper thighs to my stomach and he said the only answer at this stage is to incise them as and when.  I am in stage 2 I think.  

    Good luck and let me know how you get on please.

    Bev x

  • Guest
    Guest lilyyy1113

    Posted

    I am sorry to read the horrors that you are going through, however i just wanted to warn you to always keep a level head with this condition. if you don't constantly seek treatment the condition will worsen, trust me you don't want it to get that bad i have been on and off treatments for about 7 years but whenever i stop it shortly worsens
  • just.say.yas
    just.say.yas lilyyy1113

    Posted

    HI! I'm in exactly the same position. 22. teary and depressed. I was diagnosed yesterday and the dermatologist didn't explain anything effectively. He checked me out and diagnosed HS and prescribed a list of antibiotics, roacc and birth control (I've never taken any before) without explaining the treatment and how to take it. All that was in 15 minutes and I was rushed out the door. I'm confused, I've been perfectly healthy all my life apart from this condiction under my armpits and suddenly I'm on chronic medication. I'm terrified. 
    • hypercat
      hypercat just.say.yas

      Posted

      Hi I understand how you are feeling but please don't be terrified.  HS is a chronic condition but it can suddenly go into remission for a long time and also with the right treatment.

      It sounds like yours has been caught early if it is just in your armpits.  Aggressive treatment in the early stage is very important to stop it spreading and causing damage to the lower level of the skin.

      There should be instructions on the ab's and it looks like he has given you those to take every day which hopefully should stop or limit the damage.  Roacc is quite strong and he should gone through the side effects of this with you first.   It isn't suitable for everyone.

      Make an appointment with your doctor and get him/her to explain what the treatment is for and how to take it.   Bev x

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