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!

A rather irritating symptom

Common symptoms of PCOS include:

  1. Irregular, few or absent menstrual periods
  2. Infertility resulting from a lack of ovulation
  3. Hirsutism
  4. Hyperandrogenism resulting in excessive acne and caused by excessive production and/or secretion of androgens

I suffer from all the above in varying degrees.

1. Thank Gd for Clomid as that keeps my periods fairly regular.  2. Infertility, DUH! 3. I am not too hairy but I definitely have a few stray hairs that shouldn’t be growing where they are growing, lots of tweezing and waxing ensues.  But its 4. that I have a major problem with at the moment.

I have always suffered from spots, I cant say acne, as to me acne is constant and many pimple all over the face.  I do not get acne as such, what I get are 2 or 3 pimples on my face, usually around my nostrils and on my chin.  They start off mild, blind pimples and a lot of the time the go away but when they dont… Oh boy, they get huge and red and sore, I look like I have been stung by a swarm of bees and did I mention they are sore?

The last two months have been hectic, as one disappears another takes its place, right now I have a large red patch below and to the right of my nostril, this one is blind and freaking sore, I have three, evenly spaced spots across my chin, one smack bang in the middle and one on either side of my mouth.

I also have two small cysts/pimples on my panty line and these ones take forever to go away because of the constant pressure of my underwear.  I have been getting these cysts since I started getting my periods 17 years ago.  They are the bain of my existence.

I can deal with all the symptoms, I can even deal with red spots on my face, what I cant deal with is the pain!  I live on pain killers.  I’m grouchy and irritable and touchy and miserable.

I have tried face washes, supplements, facials, reflexology, the works!  The only way to stop the spots is to either fall pregnant or go back on my pill…  Need I say more?