What better place to vent on the internet, than my very own anonymous blog.
I'm a 23 year old female, who has been suffering at Hidradenitis Suppurativa's merciless claws since I was 15/16. But it doesn't stop there. Lets throw Poly Cystic Ovarian Syndrome (diagnosed) and potentially even Endometriosis (not diagnosed) in the mix.
My life, is not that of a normal persons. As many others with HS would know, most days involve tender-to-touch lumps and bumps, some of which fill with a mixture of pus and blood. These "monsters" as I've grown to name them are scattered across my body, affecting various areas that include but not limited to:
- Arm pits
- Just below the arm pits
- Under the breasts and around the nipples
- Top of the pubic area, meeting the bottom of the stomach area
- Butt cheeks, and the bottom of the butt cheeks.
- Inner thighs
- Bikini line
These are of course not the only areas that HS can affect, these are simply the areas that I am affected *so far*. There seems to be no where this disease won't go. I've once had a monster on the back of my knee, thankfully only the one time. And I've also conversed with a young girl who has HS monsters covering the back of her neck.
In a way, I am grateful that my HS has not progressed that far, but just knowing the fact that some people are affected on their necks and faces is horrifyingly scary. It's horrible enough having it in the current places it is in, which thankfully can be covered up, without having to worry about it spreading to places in which are not so easy to cover up.
Let's go back a few years.
I was roughly 15-16 when I first noticed the lesions on my body, I had no idea what they were, it was only a few under my arm pits at that time, and I assumed it wasn't anything major (how wrong I was, hah) I thought it was just a rash, or a reaction to something. So I left it be.
I can't remember exactly when it got worse, but I can remember the first time I ever went to see a doctor to get help. It was in 2008. I was 19 years old, and I had a lesion on my right inner thigh that was making it very difficult for me to walk. I had rung my best friend up to take me to a doctor, so we went and saw her doctor. He had no idea what it was (No doctor seems to, apparently). He said the lesion was too big for him to drain, so he had written me a letter to go to hospital to have surgery to drain it, and IV anti biotics.
So off to the hospital I went, with the referral from the GP I had just seen. I was in agony, it hurt to walk, it hurt to sit, it hurt to sit. No matter what I did, it was painful. After waiting and waiting, I finally got in to see the Doctor at the hospital. I presented my letter, and after a quick 10 minute visit, which including revealing my inner thigh for the doctor to gawk at, I was sent home with a prescription for anti biotic tablets, and the doctor's diagnosis was "cellulitis"
I had a freaking letter, from a freaking doctor, who made it very freaking clear, in said freaking letter, that surgery and IV anti biotics was in order. I was in freaking pain. But no, this asshat at the hospital sent me home, no surgery, no IV anti biotics, just a prescription for anti biotic tablets. This, is the night where any faith I had for doctors, went out the window. I gave up on doctors, this night. I very rarely saw doctors from this night on wards, as I felt let down by the medical profession. I felt like I was just another signature on a piece of paper for a medicare billing... Just another number on a paycheck to a doctor who couldn't give a stuff.
I've been to the doctors a few times in the last 3-4 months, and have heard back the standard "WASH WITH ANTIBACTERIAL SOAP" and "HERE, TAKE SOME ANTI BIOTICS" also, "HERE IS SOME PANADEINE FORTE" It doesn't work. The anti biotics help only a little bit, but they don't clear up the HS, because it's not an every day infection. It's a for-the-rest-of-your-life infection! And the panadeine forte, oh, don't get me started. It's lost it's effect on me! The pain is STILL there. The panadeine forte does NOTHING for the pain. Special anti bacterial soap, same thing. DOES NOTHING. And the depression? Well, that's still there.
So off to the hospital I went, with the referral from the GP I had just seen. I was in agony, it hurt to walk, it hurt to sit, it hurt to sit. No matter what I did, it was painful. After waiting and waiting, I finally got in to see the Doctor at the hospital. I presented my letter, and after a quick 10 minute visit, which including revealing my inner thigh for the doctor to gawk at, I was sent home with a prescription for anti biotic tablets, and the doctor's diagnosis was "cellulitis"
I had a freaking letter, from a freaking doctor, who made it very freaking clear, in said freaking letter, that surgery and IV anti biotics was in order. I was in freaking pain. But no, this asshat at the hospital sent me home, no surgery, no IV anti biotics, just a prescription for anti biotic tablets. This, is the night where any faith I had for doctors, went out the window. I gave up on doctors, this night. I very rarely saw doctors from this night on wards, as I felt let down by the medical profession. I felt like I was just another signature on a piece of paper for a medicare billing... Just another number on a paycheck to a doctor who couldn't give a stuff.
I've been to the doctors a few times in the last 3-4 months, and have heard back the standard "WASH WITH ANTIBACTERIAL SOAP" and "HERE, TAKE SOME ANTI BIOTICS" also, "HERE IS SOME PANADEINE FORTE" It doesn't work. The anti biotics help only a little bit, but they don't clear up the HS, because it's not an every day infection. It's a for-the-rest-of-your-life infection! And the panadeine forte, oh, don't get me started. It's lost it's effect on me! The pain is STILL there. The panadeine forte does NOTHING for the pain. Special anti bacterial soap, same thing. DOES NOTHING. And the depression? Well, that's still there.
But there has to be something they can do? Nope. Very little. There is no cure available for this absolute jerk of a disease. Just one day at a time of pain. Today it could be pain in my arm pits, tomorrow it will be in my inner thighs. There is no end to HS. There just seems to be no light at the end of the tunnel.
That is why I'm here, starting a blog just for myself. I want to make atleast one post a week, hopefully more if I feel up to it. I want to document each and every nasty monster that invades my body. I want to vent, when I'm having a bad day, even if no one is reading this, but just for my own personal need to get it off my chest. For when I can't talk to anyone and need to just cry it out, and stop myself from doing something I'd most likely regret, and for when I want to save particular photos of monsters to a particular day to keep track of my HS.
That is why I'm here, starting a blog just for myself. I want to make atleast one post a week, hopefully more if I feel up to it. I want to document each and every nasty monster that invades my body. I want to vent, when I'm having a bad day, even if no one is reading this, but just for my own personal need to get it off my chest. For when I can't talk to anyone and need to just cry it out, and stop myself from doing something I'd most likely regret, and for when I want to save particular photos of monsters to a particular day to keep track of my HS.
