1. Community
  2. Skin and nails
  3. Hidradenitis Suppurativa

Is this Hidradenitis Suppurativa?

Posted , 9 users are following.

lala1234
lala1234

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? 

0 likes, 24 replies

24 Replies

Next
  • aussie76
    aussie76 lala1234

    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.

    • aussie76
      aussie76

      Posted

      Drats can't edit...  I meant to say above  "Oil builds up, gets infected".  Not "Old builds up, gets infected".
  • lala1234
    lala1234

    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?

    • calli81195
      calli81195 lala1234

      Posted

      It does not go into remission on its own, only Humera can do that.  Even Clyndamyacin will not make it come to a complete stop.  
    • crystal_08850
      crystal_08850 lala1234

      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!
    • aussie76
      aussie76 calli81195

      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?
  • calli81195
    calli81195 lala1234

    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! 
    • lala1234
      lala1234 calli81195

      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.

    • calli81195
      calli81195 lala1234

      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

    • lala1234
      lala1234

      Posted

      Do you know why that post is being moderated?
    • calli81195
      calli81195 lala1234

      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.  
    • aussie76
      aussie76 lala1234

      Posted

      Yes that's pretty standard to build up tracts.
    • lala1234
      lala1234 calli81195

      Posted

      Thank you so much. This is very helpful. Its hard to find people who are in the same situation!
    • lala1234
      lala1234 aussie76

      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.

       

  • miss_smith
    miss_smith lala1234

    Posted

    I found i got really bad flare ups if a shaved my armpits with a razor in hot weather as i sweat alot, if you use razors/wax it takes a few layers of skin away too so i rarely shave now just trim the hair as i hate wearing anything that will show my armpit scars anyway, antibiotics fail to work for me nowadays i end up having InDs alot, ive tried so many things to reduce them ive lost count after 10 years ive just given up and resigned myself to being in pain constantly
    • lala1234
      lala1234 miss_smith

      Posted

      The time I got my worst flare up was exactly that situation. This might be TMI but I have extremely thick hair so whenever i shave with a razor, I end up getting cuts one way or another simply because of the hoarseness of the hair. 

      I also sweat A LOT... to the point that during the summer I have to bring a few shirts to work because I sweat right through them. 

      I believe that flare up could have also been so bad because it got infected. 

      But just like you, I rarely shave now because I am scared to get another flare. 

      I remember when I first started getting these nodules/boils on my groin/buttock area around the age of 12 and I had no idea what they were. To date, that is still the area that impacts me the most and has the most scars. 

      Glad to have found a support blog for this and to get a lot of answers in one day!

    • aussie76
      aussie76 lala1234

      Posted

      With the shaving have you guys tried electric shavers with a guard?  ie not a razor blade.  I'm about to try it... and thought it was the best plan.

      I'm also onto an idea about using a Nose/Ear Hair trimmer around my dairy air in the real difficult places.... I'll ask the nurses tonight, but I think thats what they've been using on me.

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.