Could I have Hidradenitis Suppurativa?

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Hi all just wondering if you can offer some help, for a long time now (so long I can't remember exactly how many years), I've been getting painful boil type spots on my tummy. When they 'erupt' they are large red boils, extremely painful if they catch on something as I'm doing housework it feels like someone is stabbing me with a hot poker. Eventually they burst and pus, water and blood comes out (sorry tmi).

When they aren't too bad they'll be like purple red hard patches under the skin. They run from just under my breasts to my thighs, there doesn't appear to be a pattern to them, they aren't limited to a particular area they are just everywhere.

A doctor saw them once, told me they were boils and I should lose weight (I had just had a baby). I was so mortified I never went back. I hate the way they look, I'm ashamed of how they make me look.

I don't know what they are or what to do about them.

Any help would be fantastic smile

Thank you

Ali

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6 Replies

  • Posted

    I should say when the boils are raised the area around them (usually about an inch all the way round) is red and hot to touch
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  • Posted

    Hello Ali

    Yes from you description it does sound like that's what you have.  The Doctors took years to tell me that's what it was too.  Loosing weight, avoiding certain foods and antibiotics - doxycycline or tetrysyline can help control it and you are best trying to be brave and go back and tell them that's what you think you have and they will help you.  Is there an alternative doctor you can see other than you went to last time as they didn't seem to be very sympathetic, reassuring or try and help you, but there is help out there.

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  • Posted

    Hi. It sounds like it might be HS.

    You really need to go back to the GP and see a female Dr if you can as Helen said. Write down the name (if you cant pronounce HS) and then go back to the Dr's and say this is what I think I have, can you confirm it please. Dr's dont know everything and they havent seen everything before.  They will have seen a lot worse than HS, trust me. Be brave, the longer you leave it and do nothing about it, the worse it will get.

    The first step is getting a proper diagnosis. I did exactly this, wrote it down as I couldnt pronounce HS lol my GP then agreed and I did feel better knowing what exactly was wrong with me.

    Take care smile

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  • Posted

    Thank you both for your replies, they were really helpful. Tonight I plucked up the courage and told my husband what I thought it was, I've tried my best to hide it from him for such a long time. Relieved to say he was supportive (as he is with everything) and didn't bat an eyelid, not sure what I was so worried about.

    Anyway I've recently moved house, to another county so I need to register with a new doctor. I'm going to do that and print out some info to take along smile fingers crossed I find a nice helpful doctor

    Ali

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    • Posted

      Yes it can be hard explaining it to your partner too as they don't always understand & it can be embarrassing.

      It was a dermatology consultant at the hospital who first diagnosed me as I felt the confidence to speak to her about it as she was really approachable. This is what you need a nice doctor who you are comfortable with to explain things to & show her. Bear with the antibiotics as they don't kick in immediately.

      Good luck, you can do it!

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  • Posted

    iH I agree it does sound like HS.  I was lucky in the sense that a close friend has it and told me she thought I did too which is when I went to the doctors.

    HS is a little  known disease and most doctors don't know anything much about it and care even less.   You need to ask for a referral to a dermatologist who will be able to explain all about it and suggest any treatments available.  Be warned though even they don't know a reason for it or have a cure.   It is very under recognised and as far as I know no one is doing research into it.   

    Good luck with that and let us know how you get on   x

     

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