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HS

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Mitzy1984
Mitzy1984

I have had HS for five years now and it's taking over my life , I currently feel like my GP has no interest in helping me at all . I still haven't seen a skin specialist which I would like too as at the moment I just treat it with warm water with salt and painkillers for pain relief. I have no idea what to do so I thought I would search for answers myself and came across this group , so if anyone who has any information or just in the same situation as myself please feel free too reply. Thanks for taking the time to read my post x

0 likes, 7 replies

7 Replies

  • hypercat
    hypercat Mitzy1984

    Posted

    Hi I am sorry you are suffering with HS,  and have had no replies yet.  You need to see a dermatologist asap,  so tell your doctor you want an immediate referral.   In my experience doctors have little interest in HS and even less knowledge so you need a specialist for access to proper treatment.

    When you have a swelling you need antibiotics which normally help to kill the infection.   When you have recurrant ones in the same place they need to be incised by a surgeon who will scrape the matter out. 

    Some people swear by cutting out nightshade foods (potatoes,  tomatoes etc.) though I have never tried that myself.   But the first thing is get that referral.   x

     

    • hypercat
      hypercat

      Posted

      Oh the other thing is never try and squeeze them as you risk causing damage to the lower levels of the skin.   This can create tunnels under the skin which makes it easier for infection to spread. 

      If it is starting to drain a bit there is no harm in helping it but make sure you are as sterile as possible.  

      Stress is also a trigger for many (including myself) so I know it's not easy in this day and age but try and keep your stress levels as low as possible.  Let us know how you get on.   x

       

    • Mitzy1984
      Mitzy1984 hypercat

      Posted

      Thank you so much for your help . I will ask my Doctor as you suggested for me to do . I also agree that my GP seems to have a very small understanding of HS . So far as I've said I only use salt water and I never pop them at all I only ever ask for Antibiotics if it won't clear by its self as I don't want to take medication too much . The scarring is terrible . I always seem to get them on my breasts which is very uncomfortable and painful but most of all the scars are horrible . It's just good to be able too talk with another person who understands thank you so much for your message x😊
    • hypercat
      hypercat Mitzy1984

      Posted

      Hi well ask your doctor.  If s/he says no then demand it as this is your right. 

      I am glad you are being sensible as so many people do squeeze them. 

      I understand that you don't wish to over medicate but you need to start taking the ab's as soon as you have an infection instead of waiting to see if they clear up on their own.  The longer they last the more damage they do to your skin to say nothing of the awful pain they cause. 

      Aggressive treatment is needed to try and control them otherwise you run the risk of them spreading to other areas (stage 2) as your treatment options are more limited then.   The worse it becomes the more limited the treatments available.

      I have always suffered from bad skin (acne - wonder if there is a link) so I didn't pay much mind to the lumps at first as they weren't infected.   It was when they became infected that I took them more seriously.   The doctors I saw didn't take it that seriously and just gave me ab's.   I only heard about HS through a friend of mine who had it much more severely than me,  so I requested a dermatologist who formally diagnosed me.   By then it had spread to stage 2.   I have had it for around 20 years now.  Fortunately because I guess of my age and the late onset - I am 62 now - mine has never been severe and I am in remission more often than not now.   I only get the odd one around 2/3 times a year thank goodness. 

      Watch out for cysts too which aren't painful.  I had quite a big 1 on my shoulder for around 6 months and it was fine.  Then the infection found it and it became a monster!   I had to take 2 lots of ab's to finally clear it up,  and I agree the scars are horrible.

      Mine started on my inner thighs and they are horribly scarred now.  The most common place for them is the armpits,  then the thighs from what I have heard.   Mine spread to my lower stomach and then I got the shoulder one.  

      Things I have been told help cause it

      1.  Smoking (I still do)

      2.  Stress (I have a lot less stress now that I have retirired)

      3.  Being overweight

      But the answer is no one really knows the causes and as it is a very little known and unfashionable disease there is little or no funds available to research it.  There is a bit though which I expect you have googled.

      Let me know how you get on please.

      There are a couple of very knowledgeable folk on here - atticus for one - who have helped me enormously and I hope they see your post and come in and help you further.   Take heart you are not alone.  Bev xx 

       

    • Mitzy1984
      Mitzy1984 hypercat

      Posted

      Thank you so much for all your advice it means so much to me too hear other people understand what its like to have HS . All mine are infected they always have puss I have just started to get the cysts under my armpits . I will defo keep you updated on what happens next for me . I smoke also which probs won't help me I don't have bad skin I never have I very rarely have spots not even when I was a teenager . I am 32 now I just really worry that it's going too keep getting more severe as u get older . Thanks again for your advice it's very much appreciated x
    • hypercat
      hypercat Mitzy1984

      Posted

      Hi Mitzy you are welcome.   I know how relieved I was to finally find this site and others who understood.   Just because all yours so far get infected doesn't mean that will always be the case as the disease can be unpredictable. 

      Neither does it mean that you will invariably progress to to another stage.  Some seem to suffer enormously but many only get a few like me.  You never know.

      Don't forget that urgent referral to a dermatologist!   Bev x

       

  • sandrarobinson
    sandrarobinson Mitzy1984

    Posted

    Hi I to suffer from this horrible disease HS. I am back to stage 3. I have done all the testing and awaiting for funding to start Humira. However I keep changing my mind as I am so scared to take Humira as I read about all the side effects. I have tried many different things I have list 55 pounds to see if it would help and still nothing I am not a smoker and I don't really eat the night shade foods well except for a couple and not often. I was under slit if stress do that might explain the flare up and with fibromyalgia in the mix doesn't help. My family and friends don't know the pain I go through so happy I can finally talk on this forum and you all understand. I feel like I am being punished and backed up to a wall now to take this medication but I can't live like this anymore I have no life. And thank god I have a husband who loves me and is very understanding. I hope you feel better soon Mitzy so sorry you are going through this too
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