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I have stage 3 on my underarms, thoughts, stomach and starting to develop on my chest. I am meeting a surgeon on Monday (woo) but have read a couple of things about it developing in other areas after surgery? Has anyone had this experience? I've had one lot of emergency surgery under my arm and since then it has developed further up my under arm and 3 on my chest but this could be coincidental, any information would be useful please smile 

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  • Posted

    Hi I am in stage 2 and think this is a coincidence.  I have a friend who had surgery on her armpits and she has had no more or only a couple of very small ones.  I think this is just part of the natural progression of the hs.  I don't think having surgery makes them spread anywhere else.  Good luck with your surgeon!  x
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    • Posted

      Thank you! I feel very lucky that I'm hopefully having the surgery electively and not because I have a huge lump like last time, so just shows you guys that with perseverance (5 years) you will get there!! X
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  • Posted

    Hi, I also have it very bad under my arms. I had a large one removed about 5 years ago and it seemed ok, but right now there are several small hard lumps along the scar and about 1 inch upwards I have one about 2 inches long that has macerated into an ulcer. Then there is another beside the scar that is only 1 cm but it has also macerated and I can feel that is is about an inch wide under the skin. BUT, these probably would have popped up anyways because the one I had removed was the first one I ever got under my arm. Before getting them under my arms I got them on my inner thighs and along my underwear line. Then I got pregnant and they dissapeared for about a year, and surprise! They started under my arms and under my breasts. So I don't think surgery had anything to do with it.

    I want to have the ones under my arm removed right now but my dermatologist told me that a good surgeon would not touch it right now becaue its not bad enough? Which is kind of silly because like I said I have had one removed before and have met with another sugeon to have one on the other arm removed. This dermatologist is highly recommended so I am waiting to meet with her again after 3 months of Doxytab treatment which she suggested, I was told it helps stop the pus and infection but will still leave the disease to run its course, just less severely.

    I personally think that if you have a lesion that is really disrupting your life on a daily basis, then have it removed and give yourself some peace for at least a little while. One thing my dermatologist said that really made sense is that , even having one or two or three removed, unfortunately there will be more and surgery will not stop the disease. Surgery is only like a temporary relief. Ultimately though, you have to have some confidence in what the professionals are telling you and also decide for yourself. Are the cysts really really bad? Can you manage them without surgery? I have had one under my right arm for over 2 years now. It just opens and closes imtermittenly and I can manage it well enough. It hurts sometimes and it ruins all my shirts when it leaks but I feel like I just want to leave it alone until I am forced to do something. It is my left arm that is really painful and I think it has to go because it is not getting any better over several months now and I have a lot of trouble in everyday activities.

    I hope I helped a little and I hope it all works out for you.

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    • Posted

      Hi I had several on my stomach which recurred 3/4 times a year.  After a couple of years I was referred to a surgeon for them to be incised.  They have never come back which is good news.  It doesn't stop others coming but at least they don't come back.  

      What you are saying is a bit worrying coz mine started on my inner thighs and have spread to my stomach.  I am dreading getting them under my arm pits because a friend of mine did and they were awful.  

      So my advice is to get any recurring ones incised.  My dermatologist told me this is the only way forward once they have spread.  x

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