Saturday, December 31, 2011

Hiding Hidradenitis

**Contains medical issues/terms - Do not read if you are squeamish**

Have you ever heard of Hidradenitis Suppurativa? I had not heard the term until recently.  What is it you ask?

Hidradenitis suppurativa is a chronic, scarring disease process that occurs due to obstruction of hair follicles and secondary infection plua inflammation of certain sweat glands, particularly those under the arms or within the anal/genital  region. The disease is characterized by the development of recurrent, boil-like nodular lesions and deep pockets of infection that may eventually rupture through the skin.  Healing of affected areas is typically associated with progressive scarring (fibrosis). The specific underlying cause of hidradenitis suppurativa is unknown. They anticipate that there are 10s of 1,000s of people who have globally it but don't report it because they're embarassed because of it.

I have been suffering with this for about 20 years but never knew what it was called.  Seeing as I already have one rare skin disease, why not throw another one me! The difference with this one and the NLD is that the HS is easier to hide based on where it is located. In my 20s, I was diagnosed with PCOS and there is a higher likelihood if you have HS because of it.  Also obesity and smoking contribute to having it.

I am self conscious of sleeveless tops because my flabby upper arms but also the hidradenitis suppurativa. Even though I don't have any active sores currently, there is scarring and pitting. The other place I get them (and just got rid of one) is the groin area. It reoccurs in the same spots when they occur and I do have some scar tissue from it. Obviously, I can cover/hide it but I still know it is there plus if I were to get intimiate with someone I might have to explain it which would be mortifying to say the least. In the past if this situation came up I would feign a headache or something to avoid the intimacy because of it.

My objective in sharing this with you is that there are many side effects of obesity that you can't see and that if you have it, to be aware that there are many others who suffer from it to but don't talk about it. I have never shared it with a doctor since I have had it.  You guys are the first people I have ever told.  Now that I have put it out there, it takes some of the stigma away for me.  Fortunately with weight loss, the recoccurance of HS is lessened but it may still exist. So even when I get to goal, I will still have the NLD and the scars from HS but I will be healthier all around. Until next time...


  1. You never saw a Doc?
    It might not be what you think it is then!
    And either way, a little med might just knock it into place!
    Either way - Happy New Year to you!!!
    May this one be amongst the best New Years EVER!

  2. Oh the things we never see a doc about. I understand that one. You're a brave woman and I admire you.

  3. I have it too! I had surgery in my right arm pit in august, I even blogged about it (and linked to that post in today's post, if you want to read about it). It's awful, but after googling the illness I have seen so many horrid pictures that I know I'm lucky. It is bothersome, but it could be so much worse. I'm going to have surgery on the left side later in 2012!

  4. HAPPY NEW YEAR chick, may this new year bring you happiness and health.

  5. Happy New Year Katie. Wishing you health and happiness for 2012. Hugs!

  6. I just read up on this condition and I think I may have had a very mild flare up of it a few times this past summer. I got an itchy rash that had small blisters in my arm-pit and couldn't figure out where it came from or what caused it. I put some anti-fungal cream on it and it seemed to help. It's been clear since the summer though.

    So sorry that you've had to deal with this alone for so long Katie. You are so right. There are many other issues that I have as a result of my obesity and it just makes me that much more determined to get healthy and leave them all behind. My desire to lose weight has 90% to do with my health and 10% to do with my appearance. The looking great does have it's appeal though:)

    Thanks so much for sharing this. You are so awesome and continue to be a HUGE inspiration to me:) Here's to the best year of our lives, 'cos it's gonna be the healthiest:) Happy New Year!

  7. oh katie this is why i love you. thank you for sharing.

    "many side effects of obesity that you can't see" soo true. I needed this reminder going into 2012.

    we are going to rock this year, girl.

  8. Happy new Year Katie. May 2012 be your BEST year ever!!!!

  9. My husband and I get pretty bad cysts under our arms and our groin area. Now I know what it is called! Thank you, Katie J!


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