Hidradenitis Suppurativa: An Unwelcomed Bedroom Friend

So, I wanted to talk about an issue that’s near, but not-so-dear to my heart.  It’s not really easy for me to talk about as it has been an embarrassment of mine for most of my life.  The thing is it really needs to be talked about because I know that there are people like me out there–people who need to know so maybe they can finally be at ease.

I have a nasty little condition called Hidradenitis suppurativa, a skin disease that affects the apocrine sweat glands, which are located in places such as under the arm pits and on the groin. People with HS have to deal with almost a lifetime worth of  reoccurring abscesses that sometimes get so bad a person can barely move, they never really heal and leave horrible scarring in their wake.

They hurt.  They drain. Most importantly, they suck.

It’s a pain in the ass and a total embarrassment.  A lot of people wind up having this problem for years and years without knowing exactly what the problem is.  Mine started around the time I was nine years old, but I wasn’t diagnosed until I was about twenty-three.  That’s a long time to think that you’re a filthy mess or Gypsy-cursed with boils.  Most of my doctors until then didn’t know what the Hell it was so the docs tried a bunch of things that never worked.

Surprise, surprise, there is no cure for HS and not every treatment works for everyone.  And, of course, those around you who love you always try to offer advice, but since they have no idea what it is, the advice generally turns out to be wrong.  It makes the situation much more disparaging.

Now, mind you, I’ve had this problem for a long time, so by the time I finally got around to getting lucky I was pretty apprehensive of letting anyone see my general areas. I still vividly remember the first time where the guy asked “what’s that?” when felt around down there and rubbed a bump.  I played it off, though I was morbidly embarrassed about the whole thing. Still, I swallowed the same down and continued on, but it took away something from the fun.

Luckily, I haven’t had too many problems in the bedroom arena.  Well, there was this one guy that said “ew,” but a) that didn’t stop him from continuing activities down south, and b) I wasn’t really all that into him, anyway.  It really painful, though: even without too much feedback about the old/new blisters, I sometimes feel very restricted with my sexuality because of them.

Then, I say to myself “Erica, get over it.  You and HS have to learn to live together for a long time.  Don’t let it stop you from all the good bedroom times you enjoy.”

If you find yourself in a similar position, here are a couple of things you may want to consider before getting intimate.

  1.  I know it’s embarrassing, believe me, but before getting frisky, you may want to consider explaining the issue with your partner.  You don’t have to get too graphic about it, just say something like “I have this condition where I get bumps in XXX area.  It’s not contagious or VD or anything, but I just wanted to let you know before you get up close and personal.” Being honest will save you from pain or aggravation later.
  2. If you’re like me and HS makes you feel a little unclean sometimes, take a nice shower before you get busy.  You can also try a cleaner known as Hibiclens.  It works wonders!  It’s powerful stuff and it’s really refreshing.  Bonus, it doesn’t have a gross, medicine smell.  In fact, it’s rather pleasant.  Another aid I use is tea-tree oil, which is a natural antiseptic. It has a clean, earthy scent to it.
  3. Dressing up for the bedroom?  Well, it may be a good idea to find something loose, but sexy as opposed to tight and restrictive.  Something about our friend HS doesn’t like being confined which can ultimately make things worse.  (I fully endorse Fredrick’s of Hollywood’s Illusion Gown. It’s wonderfully sexy!)
  4. Never, EVER be ashamed of your body. HS is beyond your control.  If someone is worth being intimate with, he should be intimate with all of you.  Otherwise, dump his ass and move on because there is someone better out there waiting to find you. You wonderful person, you.

If you have HS or suspect you do, just understand that you’re not alone.  There are several groups around the net, especially on Facebook right now.  You’ve never meet nicer groups of people who are willing to support you and listen to your woes. So hold that head up high!

Other places to check out:

HS on Wikipedia

HS Institute

HS USA

 

Posted in Blog, Real Life Tagged with: , , , ,
2 comments on “Hidradenitis Suppurativa: An Unwelcomed Bedroom Friend
  1. Chooplah says:

    Pretty badass of you to post about HS, you’ve got the perfect attitude, love it!

    • EricaB says:

      Thanks. It’s taken me a looong time to talk about about it. It’s good to just let it go, you know?

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