Tag Archives: Hidradenitis Suppurativa

Finally

So I called my dermatologist last week (I hadnt seen him in 6 years!) and was told that the first available appointment was in January.  2013!

His receptionist gave me some numbers of other dermos that they recommend and I called around.  The earliest appointment any of them could give me was April!

I took one.

In the mean time he actually called me and consulted over the phone, he recommended I keep my April appointment and put me on his waiting list.

The next day the doctor I had the April appointment with called and said that I could come the next day as they had a cancellation.  I grabbed it!

The reason I wanted to see the dermo is explained in this post.  Go take a look and come back here.

So it turns out that yes, I do have HS in my groin.  But what I have on my face is a severe form of Perioral Dermatitis.

My lovely new dermo suggested I go on a low dose of Roaccutane to sort out my face first.  The HS may or may not be effected by the Roaccutane but we will only be able to tell after the four month course.  If it doesn’t clear up the HS we may have to do a stronger dose for another four months.

I am so happy we may finally have a permanent solution to this.  I am also very very aware of all the side effects to the Roaccutane and am willing to risk them.  These skin issues have been around for over 20 years. TWENTY YEARS of dealing with this on and off and I have finally had enough.

So here is hoping to a permanent fix!  Wish me luck!

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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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