'Its Not The Endo The World...'

It was the day I had been waiting for, and as my phone rang with a familiar number, my tummy churned and I quickly answered. "Hello" "Hello is that Amy Hook?" "Yes speaking" "Hi Amy, I'm calling from the Gynaecology department at Colchester Hospital, I have a date for your operation.". As many of you know, I have been on the wait list for a hysterectomy with excision of endometriosis since last June. It's been a long wait but one that I knew I had to be patient with. In my mind, I thought the end of the year or maybe even the beginning of next year was most likely for the op. I had plenty of time. So when the lady went on to say "Is the 30th June okay for you?" I was left a little speechless and I found myself simply replying with "Wow, so soon?!".  So here I am 4 days later, and 5 weeks out from the operation, writing my next blog post whilst on a plane home from a few days in Berlin for work. I feel so many emotions ...

The Friday before last, I woke up with that all too recognisable feeling of nerves and dread, it could only mean one thing, it was operation day! This time I was going in for an urology procedure as opposed to my usual gynaecology. The purpose of the operation was to investigate any potential issues with my bladder that could be contributing to my ongoing pain. The procedure included having a camera inserted into the bladder, having some biopsies taken and finally something called hydrodistention which is checking the capacity that the bladder can hold and the stretching of the bladder if required. There was a small hope that it would delay the need for a hysterectomy quite so soon. If they found anything abnormal, this could explain the pain, and could potentially be managed via other means. And of course, I was more than happy to oblige if it meant holding off on the big op. We got to the hospital for 7.15am and made our way to the day unit. I felt sick at the thought of my previou...

It didn't take long for me to be back here writing about my next operation. It only feels like last week that I was going through recovery from my last one. Its actually been 15 months since then but that certainly doesn't feel long enough to be facing another nerve wrecking encounter at my least favourite place! However, 4 weeks tomorrow I shall be doing exactly that. It marks my fourth operation in the last 5 years. This time I am going in for a  cystoscopy with hydrodistention. For those who have just said what's that, its a procedure where they put a camera in the bladder, and then use fluid to stretch the bladder.  Why am I having this lovely sounding op you ask, well its primarily to see if I have another chronic condition called Interstitial Cystitis which could be contributing to my daily pain. if I am diagnosed its another step to managing my pain before committing to the final hysterectomy. Whilst potentially adding another condition to my brok...

On the 17 May, I had my long awaited follow up appointment with my consultant. This was the first time I had seen him since my surgery at the end of November last year. I wasn't entirely sure what to expect, but what I did know was that the operation hadn't given me the results I had hoped and my pain was still at an all time high. However, I wasn't expecting what he had to say... The words "you may never get any relief, nothing may help you" weren't something that had ever been said to me before. Sure, I know that Endometriosis is incurable, its a chronic disease you get for life after all. But what I hadn't ever considered was the pain would potentially only ever get worse and never ease up. We go through all these operations, procedures and trialling various drugs to get that relief. And to do that we need the hope that there is light at the end of the tunnel to get us through the side effects and the recovery after each operation. Now all of a sudden...

This week marked 13 weeks since my excision surgery. In some ways it feels like a lifetime ago but equally it also only feels like yesterday. The fact I'm not back at work full time doesn't help with that feeling but its what my body needs and I know I should listen to it, as difficult as that can be. However, in listening to my body this week I've also started to wonder, is the Endo back already? Last Friday as I got up to start preparing some food for dinner, I had a stabbing sensation in my lower left abdomen. As per the normal reaction for cramps, I bent over and crouched down praying for the pain to pass. But it didn't. In fact it got worse, to the point where I ended up simply just sitting in the middle of the kitchen floor. Every time I moved, the pain intensified making me feel sick and filling me with panic. I started to wonder how I was going to get off the floor. I even started thinking about how dreadful spending a night in A&E was going to be! Luckily...

Two and a half weeks post op and I feel worse than I did when I wrote my last post a week after surgery. They always say recovery is a rollercoaster and it certainly has its ups and downs. This week I've been struggling with intense cramps that make me just want to curl up in a ball, and pounding headaches that make me want to bury my head under a pillow. Its been particularly frustrating seeing as my physical wounds are healing very well and I'm now able to walk around normally, rather than being scared that the slightest wrong movement could reopen an incision. That said I have managed to venture out for an hour here and there to catch up with family and friends to stop myself from going completely mad from cabin fever. Although laying under a blanket, with the cats, watching Christmas films by the Christmas tree lights hasn't been too much of a hardship with how I've been feeling. I know I'm still healing after major surgery but its hard not to worry that the ...

Wow. Has it really been a week already since my operation?! OK so yes I am feeling it but I honestly don't know where that time has gone. But I promised I would give you all an update on what has happened etc so let me start from the beginning... Bowel prep. Yes thats where I am going to start. And yes it really was as horrendous as I was expecting. Naturally seeing as it wasn't a pleasant experience, they make you go through the process twice. So Wednesday night, I hid myself away and again on Thursday morning at 5am I did the same. Theres not much more to say on the subject apart from I don't want to see another enema for a very VERY long time. I got to the hospital at 7am on the Thursday morning. Nervous and anxious for what the day was to hold, my parents and sister accompanied me to my place on the ward. I eventually had a nurse come and see me to start the process of getting ready, and before I knew it I was in my gown, with my stockings on, waving goodbye to my f...