Is this Hidradenitis Suppurativa?

Posted , 9 users are following.

Hi everyone,

Im looking for answers to a few questions I have. I've been getting boils/nodules in my buttock/groin area that would sometimes break open and sometimes just disappear since I was around 12. They left scares which are still there to this day.

Around 15-16, I started getting 1-2 boils/nodules in my armpits that would sometimes burst open and sometimes just go away.

2 1/2 years ago, during a very hot day in May (i mention hot because i SWEAT A LOT) after shaving, I got multiple boils/nodules under both armpits. They were very red, painful, tender to the touch. Some of them broke open and released some fluids, some of them went away on their own after a week or so after I got put on antibiotics. 

The doctor diagnosed it with HS. She said that she had the same thing when she was younger and what I was experiencing was a "flare". 

I have never met anyone who experienced something like this, or even heard of HS so I am looking for if someone has ever experienced this? 

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  • Posted

    Hi Lala.

    Welcome to the club and about 3% of the population! Sweating can make it flare... But... You're probably going to get them anyway even if you avoid it. Don't mean to focus on the sweat but coincidentally it does affect your sweat glands... Natal cleft, armpits...

    There think it's a hair follicle malfunctioning... Old builds up, gets infected... Turns into a boil... If you're unlucky and the boil doesn't burst it will abscess.

    It's a permanent condition. But you may not always see the symptoms.

    The ones on your bum could possibly be labelled pilonidal cysts. If noted my butt ones and focused on the groin and later armpits. Only recently got the pilonidal removed.. Yes they can remove that one if it's significant. Look up pilonidal cyst. Lots of people with HS have both... It seems to be caused by the same follicularly challenged skin.

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  • Posted

    Thank you so much. 

    Since 2 1/2 years ago, I haven't had a relapse in my armpits but reoccurent boils/nodules in the groin/ buttock area. 

    Does this condition go into remission and come back?

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    • Posted

      I found remission after 10 years by cutting my food triggers which were nightshades, coconut and nuts. I had tried everything else, spent lots of money and it was all because of food sensitivities! Good luck!
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    • Posted

      Sorry to hijack, quick question calli81195.  (i've had good success with a course of IV Clyndamyacin)  I sorta assume it will probably come back again one day.        The Himera.... does that mean taking it forever or is it a short course?  Expensive?
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  • Posted

    Oh yes! That is HS!  Welcome to the club! It is easy to deal with and treat, first of all I HIGHLY suggest Humera.  It SAVED MY LIFE!  I have been dealing with this for well over a decade (AND I AM ONLY 22)  Also keep a journal of foods and activities that cause flares.  You will not always over sweat.  I gained weight and became lazy because I was too ashamed of my sweating to even go in public, but Humera remedies that as well.  The Humera therapy is a difficult process to begin and costly but well worth it.  The injections are painful however, the benefits HEAVILY outweigh the negatives!  Best Of Luck With It All!!!  ~HSsista! 
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    • Posted

      This give me some closure after so many years wondering if this was normal or whats going on with me! I did so much internet-searching and I was finding the scariest of scenerios. 

      One more question. After I had one of my biggest flares (in both armpits), the boils/nodules that opened up and drained had scarred but the ones that disappeared on there own after I got put on an antibiotic ... I can still feel them under my skin. 

      Did you also experience that? I'm also 22 and I started getting nodules/boils in my groin/buttock area since I was 12 so I completely understand.

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    • Posted

      Oh hell yeah, I have had HUNDREDS of those.  My suggestion, stop the antibiotics! They only make it worse.  Go to a dermatologist and ask about Humera and your other options.  And if you need ANYTHING else in the way of advice, support or help, get in touch.  

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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    • Posted

      yeah i was sending you my email incase you need anything else because i am rarely on this site.  because i know how important a support system is during this.  i didnt have one, or even know anyone with HS, so i want to give people what I didnt have.  
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    • Posted

      That also answers so many questions Im so happy I found this blog. It is so so good to find people who have what I have since GP's dont even know much about it.

      My boyfriend is a nurse and he never even heard of this condition. 

      Im scared that the flares are going to get more reoccurent as I get older (im 22 right now) as I have read from peoples experience.

       

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