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!

11 Replies to “Hidradenitis Suppurativa”

  1. I am sorry about this crappy thing.. 🙁 I think you are lovely regarless because your smile lights up the world…. nothing can take that.

    I am proud of you bokkie.

  2. You are a strong woman! I know the acne I had whilst growing up made me feel ugly and made me want to stay at home where no one could see me. So keep being strong! Keep your head held high! And I’ll keep you in my thoughts and prayers hoping that a solution is found..

  3. It’s so not going to win!! It might think it has, but believe me it’s a temporary victory… cos we WILL have that shoot soon 🙂 Hope it clears up in time

  4. Listen to Jeanette – she has super powers 🙂

    You are dealing with this so incredible well! Such awesome GIRL POWER you have!!!!

  5. Thank you all!!!!!
    Looks like the power of positive thought is working and our shoot with @Jenty is on for Sunday!
    Almost all clear!

  6. Holy crap it sounds dreadful! Do the cysts come and go on their own, or do you have to have them removed when they appear?
    Strongs girl.
    I have no doubt you’ll find a way to beat this.

  7. Yup they mostly come and go by themselves, they take anywhere from a few days to a month though…
    Except for the one on my lip and the follicle I had removed in my groin I have never had any medical intervention, although that is probably more from stubbornness that not needing to…

  8. i’d be willing to try create an aromatherapy body wash/ skin care stuff for you (i see tea tree oil has been used to treat this condition) – if you’d be willing to be a test dummy 🙂

  9. @Exmi, that would be awesome. I am willing to try anything and if it works I would be your biggest fan for ever and ever and ever amen!!!!

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