Newly diagnosed with HS - Does it always get worse over time?

Posted , 9 users are following.

Hi there, I was diagnosed with HS a couple of months ago and I am quite worried...I have done extensive research and it seems like every web page out there says "it only get worse over time." Has anyone experienced only mild HS or gone between flares and remission? Mine seems to be pretty mild so far...I have lumps in my armpits that come and go, but never rupture. I was also wondering if anyone in the U.S. knows of a really good doctor who is knowledgable about the disease? Thanks for listening! smile

0 likes, 10 replies

10 Replies

  • Posted

    Yes, they get worse. I have had the disease for 3 years. I am having surgery on both armpits in 2 weeks.
  • Posted

    I was diagnosed in March. No attack has been as bad as the first, however it has spread from just my left armpit to 'down below' as well. It is scary isn't it, especially all the horror stories about surgery. 

    • Posted

      Thank you for your response. Yes, it is very scary! Im glad to hear your first attack was the worst and it hasnt been as horrible since..My first attack was the worst as well, and seems to have gotten a bit better since.. I worry becuase I havent heard anyone yet say theirs has been mild...
  • Posted

    Hi

    First of all I'm very sorry to hear that you've been diagnosed with HS.

    I've suffered with this since my teens and I'm 61 now. I've found that I went between flares and remission. I opted for surgery under my arms after having my second child and fortunately for me it worked and I never suffered in that area after that but then they started to appear elsewhere. It's something we all as sufferers have to learn to live with unfortunately. Lots of people say that certain foods can trigger an outbreak. Mainly nightshades. Over the years I found different things that did help me personally, for example, no really tight clothing and always try to stick to natural fabrics like cotton next to the skin, especially underwear. Epsom salt baths also helped I found. Mepore dressings were also a Godsend for me but not everyone can tolerate them. It's just finding out what works for you personally and I found that reading and trying what other people have done has helped me greatly. It's a horrible disease and can be truly debilitating and very painful for many sufferers. I will say though that I did find that mine calmed down a good bit after the menopause although I still get flare ups but not as bad as before. I also find that if I get really stressed about anything it can start it off. You are doing the right thing by researching and finding out as much as you can about it.

    I sincerely hope that it doesn't get too bad for you and your health professionals look after you. Take care and good luck for the future!!! 

  • Posted

    Hello, I have had surgery in past, I still get it some. I get flare ups when I am stressed out. I recently went to another dermatologist, because I moved to Alabama. They prescribed an antibiotic that I have to take every day, and a

    Antibictrial soap I must use daily. The sad thing is that now if I go days with out taking meds, I get a spot. They can get bad and drain and so painful. They suggested me to do research on Humira. I am not too sure about the serious side effects, but it's supposed to help.

  • Posted

    Hi, I have remained mild Stage1-2 and I am currently in remissions (8 months +). I think if you catch it early and can work out what your triggers are you have chance of keeping it so. 

     

    • Posted

      I think you're right about catching it early. Back when I was first diagnosed they didn't know enough about it and people didn't tend to go to their GP because they were embarrassed about it but with the internet and such, sufferers have been able to research and learn that there are plenty of others with it and are able to share what works for them. Even today some health professionals are still unaware of how bad it can get (as I found out when I explained it to my practice nurse on a recent visiit). To be honest even now I very rarely tell anyone I suffer with HS. I've just learned to put up with it and have tried to manage as best I can.  

  • Posted

    Hi I am mild.  I have had it around 15 years (am 62 now).  I get it at the top of my inner thighs and it spread around 8 years ago to my stomach,  but nowhere else.  I only get one at a time and have many months between them.  I have been in virtual remission now for around 5 years.  

    I found stress was my biggest trigger and I am retired now so I think that makes a big difference to me.   I always seek treatment ie ab's when I have a flare up and have had a few recurring ones incised by a surgeon.  

    My HS seemed to be worse when it started and I once had a monster and spent 3 days in hospital with it around 13 years ago.  I hope yours is mild too.  x

     

  • Posted

    I have it for over 15 years now. for me it also started with just some lumps. I never had a good diagnoses untill some years back. Im between stage 2 and 3 I think. So yes, for me its bad. 

    I tried a lot. but never surgery. im afraid to do it. Also afraid I get it back somewhere else on my body and to be fair with you I rather have it under my armpits then the below area. 

    anyway. i wanted to let you know that aftetr being in so much pain for over 15 years I came across this forum and read about the curcurma suplements. Please read about it. I been using it since 3 weeks and my HS has never been better. It's still there but its recovering. And my wounds are starting to close ( for the first time in 6 months )

    Please read it about. If you find what helps for you in this early stage maybe it does not get wors.

    cheers

    • Posted

      I've deleted the argumentative posts. Please don't get into arguments or personal comments as all this achieves is putting other users off posting. 

      Regards,

      Alan

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