Daily Archives: April 29, 2010

Hidradenitis Suppurativa

**TMI warning, you have been warned!

After 17 years of suffering, I finally have a name for what ails me.

Hidradenitis Suppurativa

In some ancient and even some modern cultures, giving something a name or discovering that things true name gives you power over it.  In my case I better be Superwoman!

Some facts:

  • Hidradenitis Suppurativa (HS) is a skin disease.
  • It is not contagious.
  • There are three stages to the disease, I am in the 2nd stage.
  • It has been linked to androgen dysfunction which is also a cause of PCOS.
  • Cysts can be as small as a pea or as big as a base ball, thankfully I have only every experience the smaller range of cysts.
  • It is often called an ‘orphan illness’, due to the  very little research being conducted.
  • Treatments are varied and I have tried almost all of them with little to no success

Also, I have been hospitalised twice due to complications.

Once to have a hair follicle removed from my groin that they suspected was causing the cysts, it didnt work, all it did was leave me with a scar and the site is still prone to cysts.

The second time was when a cyst developed on my lower lip, I looked as if I had been stung by a mutant wasp.  It was so swollen and sore that I could barely talk, I couldn’t eat or brush my teeth and the pain was so great I was chugging schedule 6 painkillers like smarties.  Eventually I was admitted for two days for IV medication.

Over the last 17 years I have suffered in varying degrees from painful cysts on almost a monthly basis.

Over the last 17 years those are the only two times this disease has beaten me.

I am not ashamed to go out in public with red and swollen bumps on my face, I walk with my head held high and ignore the occasional points and whispers, I accept with grace and dignity when a shop owner gifts me with a medicinal soap because “Shame dear, that looks awful.”  I do not do bodily harm to people who try touch my face while saying things like “That looks very sore.  Is it?”

I wake up and put on loose fitting underwear and pants so as not to irritate the sensitive cysts in my groin, I go to work and I sit with my legs slightly open under my desk so I don’t put even more pressure on the area.  I try not to walk like a cowboy unless I absolutely have to.

I try my damnedest not to let this disease beat me!

It may win another round though.  We have a family photo shoot scheduled for next weekend with Jenty.  I have a huge, angry, nasty looking cyst next to my nose.  Im not sure that any editing software has the capability of making it ‘disappear’ not to mention the fact that as much as I ignore them, cysts on the face don’t lend themselves to making me feel pretty.

I’m really hoping that I beat it this time, that the medicinal soap I was gifted does the trick and that I look halfway human before next weekend.

I hope that having named my nemesis I have positive power over it!

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