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I Have Hidradenitis Suppurativa

No Diagnosis Until 3 Months Ago!

By: ZenQueen76
Written on October 10th, 2012
Hi, I have HS and I have been dealing with this condition since I was 20 years old. I was always told by family and various women; it's something all women have, you may have contaminated blood or it's because you are big boned. I can remember the day I finally gave in to the lies and I began to feel sorry for myself. I thought God was punishing me and I had been stricken with boils and Leprecy. The shame that goes along with having this condition is overwhelming. I could never get clean enough and I was worried about staining my clothes.
Now that I finally have a diagnosis, I have to admit I feel better to have a name to go along with the face..LOL. Although I am a therapist, I have sought counsel to help me deal with this condition and it does help. I want to help other people while I am being helped. Since the cause and cure is unknown at this time, I hope to be able to share the remedies of relief that have helped me.
Oh and before I forget, I also wanted to mention that I have CHRONIC HS. So yes, I constantly have 5 or more cysts under my left arm and in my groin area at all times. I refuse to be defeated by this. Not only have I worked too hard to get to this place in my life, but so many people have made sacrafices and paid the price for me to be able to suceed. I hope this is a group where I can meet people who share my passion about helping ourselves and others with HS!
By: ZenQueen76
Age: 31-35 , Female
500 people have read this story

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6 responses
  • kck300
    kck300

    Is this post still going? I am looking for some possible relief treatments.

    May 5
    1 like
  • Mini6
    Mini6

    I agree....sharing one an other's thoughts and feeling really work wonders because nobody other than an HS patient can understand what he or she is going through. But this is a disease where the causes of it is uncertain and hence the cure is uncertain too. So medications that work for one patient with HS may not work for another. Thats what my doctor told me. Specially when it comes to steroids, anti-biotics, or any home made recipes.

    Oct 20, 2012
    2 likes
  • Mini6
    Mini6

    HI. I admire your courage and spirit to fight it out. Helping people with HS is a wonderful idea. But how? Even my doctors seem clueless. I have been having this for the last three years. Various doctors are just experimenting with different medicines.

    Oct 19, 2012
    2 likes
    • ZenQueen76
      ZenQueen76

      Hi, thx for ur kind words. I will help like u just helped me with your kind words. Also, we can share stories of things thay worked for me to calm down flareups.

      Oct 19, 2012
      1 like
  • sauci
    sauci

    Hello and welcome to the group . It is refreshing to hear a story of determination that is sorely needed here, as you know it can be to say the least demoralizing .

    I have no where near your level of HS and it is my Prayer that I never do .

    I am at an age in my life where I am getting worn down by my Health issues .I have started to try to reach out to some here ,not that I know much of anything about what works or the social stigma that comes with this disease

    .But I do know having someone listen is often all we need ,and that much I can do. I see countless stories here where 30 -50 People have read them but no one says anything.

    Perhaps they think they must have an answer to the issue ,but even Dr's don't have that. It's called a support group and that is why we are here.

    I do hope others will come forward and share . Again ,welcome and thank you for helping me feel more positive .

    Oct 10, 2012
    2 likes
    • ZenQueen76
      ZenQueen76

      Thank you and I look forward to us supporting one another

      Oct 10, 2012
      1 like