Monday, August 2, 2010

As You Read This, I’m In The Operating Room…

Please take a couple of minutes to read this.  I’m writing this post not so much for me, but for everyone who has the same disease.  The disease I’m talking about is hidratenitis suppurativa. 

I’m sure 99% of you don’t have any idea what hidratenitis suppurativa (HS) is.  Don’t bother trying to Google it, because I’m going to tell you about it.

If you really want the technical definition, you can click here for what mayoclinic.com has to say.

Or you can just read my description.  If you want to see pictures you can click here.  I’m not posting them because they might seem graphic…just a warning.

Basically, it’s a skin disease (thought to be a severe form of acne) where abscesses form under the skin, ultimately breaking through the skin and discharging pus.  They usually form where skin meets skin, like the armpits, the groin, and under the breasts.  The abscesses are usually hard and very painful.

I’m lucky enough to have a minor case.  I usually only get the abscesses in the armpits, though occasionally I’ll get a couple in the groin area.  The only ones that break open, though, are in my left armpit.  The surgery I’m currently having is my third. 

I’m also very lucky that when the first abscess broke open and I was whisked off to the ER by my mother, the doctor on call knew that it was HS right away.  However, she didn’t treat it very well, performing surgery right then and there while I was awake.  My mother had to to painful dressing changes in which gauze was yanked out and then fresh stuff was packed in twice a day.

My new doctor treats it better; it’s been three years since the last surgery and there is no packing to be done.  The spot I’m having surgery on now is the same spot that my first doctor operated on:  a spot just on the breast side of my left armpit. 

In between the surgeries, abscesses flare up and get hard and painful, but there is nothing anyone can do about it unless they break open.

There is no cure.

No one knows the cause.

It’s a disease that’s misdiagnosed a lot.  They believe Karl Marx had it, as he wrote of painful boils under his arms that kept him awake at nights.  My grandma recalls her mother having “cysts” under her arms, but they couldn’t afford going to the doctor.

Sometimes it horrifies me knowing that this disease can only ever get worse.  I worry that if I ever have children (the odds are against me on this one…I also have PCOS, which results in a high percentage of miscarriages and stillborns) will they have it, too?  Will my boyfriend, the love of my life, be willing to put up with the pain, my complaining, and the surgeries?

Those things worry me, but overall, I have to say that I’m happy I have HS.  Why?  Because I’m glad that there isn’t another, better person suffering through it instead of me.  I don’t mind the pain and the surgeries.  I can live with it.  Other people aren’t there can’t.

So if you read this, thank you.

This wasn’t a post about me (though it might seem like it).  I told my experiences to benefit everyone out there with hidradenitis suppurativa.

If you’re going to comment, please don’t say you’re sorry.  It’s not your fault I have HS, so there’s nothing you have to be sorry about.  If you do comment, just give support.  Give me some semblance that you read this and learned something.  That’s all I really want.

7 comments:

  1. Very informative & I did learn something. I wish you a speedy recovery.

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  2. What a beautiful post...you're in my prayers for a successful surgery and speedy recovery. I thank you for educating us about this disease. All the best to you!

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  3. All I can say is thank you... I have never seen anyone else write about this and I actually have it. I've done tons of research over the years trying to figure out what the issue was and one day I came across a site about HS and I finally had an answer.

    Though it only partly an answer because, like you said, no one knows the cause or a cure for it. And not enough people suffer from it to put it at the top of the list.

    I don't have a severe form thank goodness, but I do have it, mainly on my inner thighs. It's embarrassing and a good reason why I don't wear shorts or a swim suit. In fact no one even knows I have it except my husband. I'm lucky that he's so unbelievably fantastic and doesn't care.

    I've never seen a Doctor for it, mainly because I have no insurance to afford one. And from what I hear, that half the time they seem to make it worse because they don't know how to treat it.

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  4. Thank you for posting this. I have never heard of it before, but I believe that this is possibly what my mom has been suffering with for years and years now. I am going to go do more research before I let her know about it. She has been embarrassed by it all this time. Hopefully if she learns more, it will help her to know that she's not the only one that is suffering from this.

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  5. Thank you for sharing your story! I'd never heard of it before. Well wishes for the surgery being sent your way!

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  6. Ouch.. I hope you are feeling better

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  7. Thank you for sharing this...I've never heard of this before and I have definitely learned something. I was humbled by what you said about you being glad you have it instead of someone else. You don't hear many ppl say something like that.

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