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hs and doctor. need advice

Posted , 5 users are following.

joavila92
joavila92

Hi.

I was diagnosed with hs about 6 month ago. I had it prior maybe for about 1 year or so but i never went to the doctor because i was to embarrassed. First it started off on one of my armpits then out went to my other one. On both i have open wounds. About 6 months ago u went to my primary doctor with my mom and she told him that' i had something on my armpits and i had to show him. Once he saw he said i had to go to the er right away. So i did. It was so embarrassing everyone who looked at my armpits look disgusted. Anyway they told me i had to stay a day. So i did. So they did was give me iv antibiotics and that's it. I only saw the doctor twice. She looked then said i think i know what it is and said she needed a second opinion so another doctor came a confirm it was hs. 

They told me i had to go back to my primary doctor request a dermatologist. I did not go because i was embarrassed again. So i went to day to my primary doctor and i told him what they told me but he says one of the wound is open and i should go to the er again. I told him they didn't do anything besides give me iv antibiotics and he's like no you have to go. Should i go. I mean i don't have any active abscess es there just open wounds which do hurt but what are they going to do at the er. Last time they didn't even clean my wounds it anything. I feel lost. I don't want more antibiotics . i know i have to lose weight aswell.

I told him to refer me to the dermatogist and he refused. He said er. I don't know what to do. I feel like my doctor doesn't even know what hs is

0 likes, 10 replies

10 Replies

  • nikki1734
    nikki1734 joavila92

    Posted

    My advice would be to go to er, and if they say you need to see a dermatologist then ask them to put that in the report that they will send to your gp (they send one after every visit). Leave it a few days, then contact your Dr again and argue that the er report states what condition you havhaand what course of action they recommend.

    You will need to see a dermatologist though I would have thought as a lot of medication used for HS can only be prescribed by one. 

    Hope this helps, I learnt a long time ago that when you suffer from HS you have to be willing to fight to get the right treatment 

  • mikecrisco
    mikecrisco joavila92

    Posted

    I'm not a doctor but if he think ER is the place then go.. What can it hurt.

    Then look up dermatologist and all they do us antibiotics anyway.. General surgeon is the place for people like us...

    Good luck

    • nikki1734
      nikki1734 mikecrisco

      Posted

      To be honest, General surgery hasn't done me any favours in the long run. I've had diagnosed HS stage 3 for 5 years although they think it's been more like 10 to 12 years in total. I've had 19 operations in those 5 years and have been unable to work because of where I get the lumps (inside of both thighs, groin and between buttocks). It's either too painful to walk or I've been covered in post op bandages. 

      Problem now is that I have that much scar tissue that surgeons are reluctant to do it and they've now realised that a plastic surgeon was where I should have been sent in the first place!! Unfortunately the plastic surgeon is now also reluctant to go there because of the level of scarring. 

      Until there is more awareness and research into this then there is no quick fix sad 

    • mikecrisco
      mikecrisco nikki1734

      Posted

      I'm 56 been dealing with it for years.

      I had another surgery on the whole side of my scrotum n right butt. Had that done 17th of DEC. It is horrible and almost inhumane what is done to us. This is the only way I have known to stop this. If you know something I don't please tell me n us..

    • joavila92
      joavila92 mikecrisco

      Posted

      Yea i don't want to go cz treatment is not good. Do you have any tips on hs. Like psn management. Smell management eyc. When i went to the hospital they didn't tell me anything
    • mikecrisco
      mikecrisco joavila92

      Posted

      Its been my experience n years of it..

      That the medical world really doesn't know to much about out disease.. It is a painful and humiliating disease we have..

      Lost for word. I'm still in bed from surgery 2 weeks and 3days ago ..this stuff is no joke

    • joavila92
      joavila92 mikecrisco

      Posted

       It really is. It's embarrassing. I'm really tired. 

      It's also expensive. 

        I need advice on how to manage it. Which I'm getting a feeling it's very hard to do

  • hypercat
    hypercat joavila92

    Posted

    Hi I am going to put my 2 sense in as well.  I was diagnosed with HS around 6 years ago but have had it for a lot longer than that.  I am more fortunate than many of you because I am still only in stage 2 and it seems to be tailing off a bit now thank goodness.  

    Please don't be embarrassed about going to ER as no one is 'disgusted' by it as they see far worse sights than that believe me.  If you have an open wound it needs to be treated because of the risk of infection.  It is rare but you can get blood poisoning from them which can be life threatening so you need to get it seen too.  

    In my experience doctors know very little about HS but a dermatologist does so you need to insist (take someone with you if necessary) that you be referred again and this time please go.  You need to stop it spreading as there are less options once it does.  

    Treatments which might help in your stage are

    1.  Long term antibiotics 

    2.  Putting a lotion on such as dalycin when you can feel one starting - this is available on prescription only (I presume you are in the Uk?)

    Treatments which help me are

    1.  To be vigilant and watch out for them starting and to be aware of any lumps or bumps you have because they can turn.

    2.  Getting to the doctors immediately (or keep a rescue pack at home) of ab's which work for you.  I use doxyclycine.

    3.  Any ones you have that recur several times ask to be referred to a surgeon to get them incised.  They do them under local anaesthetic.  This will help stop them coming back.

    4.  Easier said than done but try to avoid stress as much as possible - this is my main trigger.

    You may also be prescribed roucatine which is quite strong but apparently is quite good.

    My dermatologist told me as a last resort plastic surgery can be done.  A friend had it done when the scarring under her arms was so bad she couldn't raise her arms above her head.  It is not perfect now but quite a lot better for her.

    Keep coming in here and we will help you all we can.  Take care.  x

    • mikecrisco
      mikecrisco hypercat

      Posted

      I gotta tell you I'm from the US n justvfiund this online but it has been good to know I'm not deal with this stuff alone. Don't get me wrong this is not something I would want anyone to have but having others understand really helps.

      Thank you all

  • juicing_julie
    juicing_julie joavila92

    Posted

    I have suffered HS for over 30 years, hypercat's advice is great. Unfortunately you will go around in circles until you find what works for you. Different things have helped me at different times. HS is not caused by weight gain but I am overweight because of HS. A cycle of being depressed about having HS, over eating then not able to exercise as that makes the HS worse and so it goes on. I scoured the internet and got some great advice here to follow the paleo/ Dukan type diet. I have started that process and although I havent lost loads of weight yet I have found the high protein diet and cutting out the nightshades from my diet e.g. potatoes, peppers, aubergines has helped my cysts/ boils alot. At least I think that is why. I am keeping a food and symptom diary. Good Luck 
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