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I Have Hidradenitis Suppurativa

20 Living With Severe HS And Its Only Getting Worse Someone Talk! Please

By: missamberdawne
Written on February 7th, 2013
Im 20 years old .. i have had HS for about 7 years now...
it was never extremely bad just some in the groin area. but in the past 8 months it has progressed to severe. I can barely wear a bra im usually always in a sports bra.. I constantly have to wrap the sores on my legs and under my breasts just so they dont sick to my clothing. It has really brought me down the past couple months. I should be happy, i lost 55 pounds , i found an AMAZING man who loves me for me and supports me through this whole HS thing and anything else that's going on. Yes i am happy, but not nearly as happy as i should be. This HS is starting to affect my job. There is mornings i get up and can barely walk. I constantly have to wear a pad on the back of my underwear because there's one that leaks back there and leaks through all my pants. I just want to be able to dress up, wear what i want and feel good about myself again. I never thought it would escalate to this. I know i have my boyfriend and my mother to talk to about this but i need to talk to someone else who lives with it to.
I want to get married and have my dream strapless dress, and i feel like that wont happen because the boils under my arm leak and they look disgusting. Not to mention they smell so bad. I feel so...ewww disgusted about myself. I should be enjoying my life, but all i do anymore is sit and wonder why me? what did i do to deserve this?
By: missamberdawne
Age: 18-21 , Female
158 people have read this story

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7 responses
  • goths123
    goths123

    Wow, you sound just like me...i have the same problems with the whole drainage going on. It really does suck! I don't think people really understand what i am dealing with, especially my work associates...they don't understand the mood swings and the pain. Glad to hear that i am not alone. I have been full of self-pity for the last week, beating myself up with it. Thank you for sharing your story.

    Mar 4
    2 likes
    • missamberdawne
      missamberdawne

      hidradenitis.support@groups.facebook.com
      https://www.facebook.com/groups/hidradenitis.support/


      it is difficult ; im always here to talk! & i have now set up a support group for people dealing with Hs and the family and friends come join and help get this a known disease and so people can understand Us as regular people.

      Mar 5
      1 like
  • missamberdawne
    missamberdawne

    https://www.facebook.com/groups/428676993880049/

    Mar 4
    1 like
  • missamberdawne
    missamberdawne

    hey everyone!
    thank you all for your support.!
    i actually have some input for you girls to!

    if you have severe HS go get one tested to make sure its not MRSA! mine got worse and my derm. tested one it came back MRSA! she put me on bacterium and they are clearing up! but theres also this wash called hypacleanse ( i don't know if that is the right spelling) That stuff is AMAZING! its actually the antibacterial soap they use before surgeries and let me tell you it helps ALOT with hs! not saying its gonna cure it or get rid of it but i have severe HS and it has relieved them alot!
    also here in pa they are trying an experimental drug called embrel ( used for cirrhosis) on people with hs! i go to the dr this friday to make sure the infection is gone and then we are gonna start the embrel! its not FDA approved yet for HS but my derm. has alot of faith in it and at this point im willing to try anything! so if it works i will let you all know and maybe you guys can talk to your doctors!

    i want to say thanks again for just giving me someone to vent to and if anyone every needs to talk just send me a message!
    ill keep everyone posted on how this medicine is!

    Mar 4
    1 like
  • terwilligerholly
    terwilligerholly

    Ive had it since i was 15 now im 22 and still battling it. I have a fiance of 2 years and im so thankful he dont judge me and hes understanding! Its hard i know it is i get them under my breast, right now i have one that goes away for couple days and comes back, i cant wear i bra either i only do when i go out special ocassion. I have them under my armpit i have one under my right arm pit that hasnt ever closed up and healed it leaks alot. I have some that are around and on my praivate area...its terrible but these were the cards we were dealt and all we can do is try and play a good hand and know we are normal like everyone else!

    Feb 26
    3 likes
  • Denicerei
    Denicerei

    I feel ya girl. I don't believe anybody deserves to live with this. We all have our challenges, ours is just difficult. Try warm compresses with a really soft cloth in the mornings when you shower it should help with the smell. I keep a dry one with me throughout the day for touch ups too. Just keep your head up. And if you have found a man who loves you and looks past the HS keep him! And remember that this isn't your fault. It's not because you're dirty or gross either. Unfortunately all we can hope to do is manage it and try to slow down its progress. And if it gets to hard, you can always talk to me. I know exactly what you're going through and can always sympathize.

    Feb 8
    2 likes
    • tcheriew
      tcheriew

      Yes i agree with Denicerei...it sounds like your man has looked past your HS and knows how beautiful u are.Ive been with my fiance for almost 6 yrs and he supports me with everything.I still hate for him to even see my scars or boils concerning his skin is as beautiful as possible o_O . But we just have to remind ourselfs tht we're beautiful sexy and gorgeous even with our battle wounds ;-)

      Feb 13
      1 like