Diagnosis of Hidradenitis suppurativa

 In 2013 I started noticing sores on my butt. Red raw sores, but only periodically. Normally when it was the time of my month. 

It looked like nappy rash and was rather irritating so I went to the GP and was told I was allergic to sanitary products and I should only use cotton products. 

Well I didn't really notice a difference, only in my pocket and when your periods are as heavy as mine and your changing literally once every half an hour those bad boys mount up! 

So I carried on in pain and tried to just grin and bare it. But it got worse. 

I started getting scabs on the top of my pubic bone. Again went to GP I got told it was dry skin and eczema. I've had eczema all my life, I knew it wasn't, but again took the cream and went on my way. Did it work? Well no... 

Two years later I felt a lump in my armpit and instantly worried it could be cancer so went to the GP was told it was just a cyst but they would send me to the hospital to make sure. 

Luckily it wasn't cancer and it was a cyst. If it got any worse they would cut it out. 

But after a while it started to drain and smell, it smelt of infection. Again was told it was just eczema as it's summer and hot and to keep it clean. 

While all this was going on I noticed a pain and blood in the toilet bowl when opening my bowels. Off to the GP again, only this time a new one as I was married and moved. 

My diagnosis piles. Well I've never had a baby and I certainly haven't sat on a cold floor since primary school age. 

I took the medication and went on my merry way. But the problems persisted. 

My periods were awful I would literally swell looking like I was six months pregnant and asked daily if I was pregnant. And there would be no warning my period would come, it would start like a tap being turned on. 

Again I went to the GP told it was just my Polycystic overlies and get on with it. Well when your bleeding through your trousers going to your boss covered in blood and then asking yo go home for a shower and change then rush back to work, there is a problem. 

Turns out after going to the GP each week I got a referral to a gynaecologist and was diagnosed with a benign tumor. Fibroids and had an operation to remove it. 

I had a 12lb tumour in me for which they think was there years. The relief. The utter relief. I thought things would get better but alas... 

While going through all that I was still getting sores on my groin and armpits. It was beginning to affect the way I walked, worked and how much time I had to have off. 

Again went to the GP got told they didn't know what it was, it was an abscess take antibiotics. It was only a work colleague telling me to ring 111 that I did. 

I got an emergency appointment at an urgent care centre and I saw a wonderful doctor who put my mind at ease. Let's be honest does anyone like showing off their vagina and butt to a doctor. 

But she was so kind and she automatically said you have a condition called Hidradenitis suppurativa.

I had never heard of this condition. I was like what the hell is it? She told me to wait at my GP tomorrow and refuse to go until I was seen, again I had to have another day off work but it would be worth it to get answers. 

I saw the GP the next day and I got referred to a dermatologist. Within a month I got seen by the lovely Dr Bozi.

She told me it was Hidradenitis suppurativa and that I was in stage 2 of the condition. She told me it was an autoimmune disease and it was more common than most people think. 

I got put on antibiotics and given cream and special wash. Things were going well, I was still getting sores but I knew what it was and I could manage it. 

Then lockdown happened and my appointment got cancelled and I would have to be referred again. I could have cried and I know people had it worse during lockdown, I know friends who lost parents children I looked after lost parents but I felt like I was at square one again. 

One day I got a huge abscess right on my pubic bone and it was smelly and nasty and I had to ring in again to work and not go in. Purely because of the smell, imagine that conversation with the boss! 

Again phoned the GP but of course they weren't seeing anyone was told to send a photo to them. Well that was some photoshoot let me tell you, eat your heart out Madonna! 

GP prescribed me antibiotics and told me to just get on with it during COVID. So I did.

Again a few weeks later I noticed a pain when passing urine so again I had a look and saw two massive cysts either side. Tears were shed and and again rang up the GP hiding in my store cupboard at work and I broke down in tears. 

I told them I was in so much pain. I knew my condition but I needed a specialist. Who knew the condition. Guess what? I found a doctor who listened to me, I was seen that afternoon. 

Again another person seeing me and again I was put at ease. She told me she had sympathy for me and she would refer me straight away. 

And she did. This time it was with DR Brown and I can't tell you how much this woman. She's been my lifesaver. 

Again I had to strip off and she had a good poke at me. Trust me it's not pretty, it's not nice and it's embarrassing but guess what it's worth it. 

When no one else can see your condition, people begin to think your making it up. 

She told me it was Hidradenitis suppurativa and it was now stage 3 and that I had the hormonal one. It's connected to the polycystic ovaries.

She then asked me about my bowel movements and if I had problems. I told her in the last year I struggle watching football if Liverpool are playing I can't stop going toilet. She said straight away have you been tested for Crohn's disease. 

She then told me turn over and she examined my butt. Guess what? Those piles I was diagnosed with were actually cysts of Hidradenitis suppurativa. And I have to pass my movements out through the two cysts. 

She also saw two perianal tears and that she was going to refer me to a rectal surgeon to make sure her diagnosis was right. 

I cried tears of relief. I was believed all this time I was told it was nothing. I was put on proper antibiotics and was sent on my way. 

This time I saw specialists and I had colonoscopy and they couldn't see evidence of Crohn's disease. But he saw evidence of fistulas and of course these pesky cysts. 

18 months ago I had to go in for surgery to remove the perianal tears. And trust me it isn't pretty. 

I had to give up my job as they told me recovery was slow! Slow I feel like my arse has been healing as long as the Queen has been on the throne. 

What has recovery been like? I have to go to hospital daily for dressing changes. What does that entail. Well it entails them putting bandages inside the wound to stop it seeping on my clothes and bed. It fails 😂. Also to stop infections. 

I also have not been able to bath in that time with any form of bubble bath. Why? Well the bubble bath would have chemicals in it which will go up in the open wound 🙄. Hot water for me 😂

After a year I started getting annoyed by it taking so long. As was Dr Brown who wrote to the surgeon along with my GP nurses. Who by the way are angels anyone who has seen my butt for the past year are angels. 

So I went in to surgery to have a drain fitted. And after a year of the operation I was still losing 20ml of blood a day and I got new people to see my butt. The district nurses who came to empty the drain 🤣

But my bad luck continued as the drain came out and I spent hours at A&E only to be told they couldn't refit it 😂. I wasn't laughing at the time, trust me. 

Now I've got a tens machine fitted to try and help heal the wound. 

Dr brown still thinks I have Crohn's disease and I still can't watch football without being ill. 

I am also fighting a sinus tract infection down there. That's not pretty let me tell you. Waiting to see Dr Brown, waiting to see if I need new antibiotics or more surgery. 

So what do I feel during a flare up? I'm tired, I'm exhausted, I can't do much no matter how much sleep. 

I also get an awful cold. I feel weak, my throat hurts and I feel run down. Then before you know it I have a new sore for the collection. 

Why am I writing this? Well the week of the 7th of June is Hidradenitis suppurativa week... I want people to understand the condition. 

During the week before and during I will post more about the condition. 

Some pictures, if you don't want to it's okay: