'Its Not The Endo The World...'

I've been doing pretty good. A month has passed since my last post and recovery has continued in the right direction. Physically I've healed amazingly, mentally I've been doing well too. But today I've wobbled. Next week I return to work. I know!! Where has that 9.5 weeks gone?! I'd be lying if I said I was looking forward to it. I'm actually surprisingly anxious about going back. I was thinking it was just the typical anticipation about what I'm going back to and how I may feel with the tiredness that I still have after my op. But today, I've been feeling quite emotional, and as I sat thinking it through, it dawned on me. I'm not sure it's anything to do with work itself, I think it's because it's "normal". Everything returns to normal when I go back to work. Right now I'm on medical leave, still connected to the hysterectomy, protected in this little bubble. But as of Monday, I'm back to normal life. Except, it's n...

Well, here we are 3.5 weeks post "the big op". 3.5 weeks since I lost a part of me. 3.5 weeks since my world changed. But most importantly, 3.5 weeks since my journey to living again started. The day itself came round very quickly. The months notice I had went by in a flash, and before I knew it, I was laying in the hospital. I started my op prep a couple of days before the big day, it was as unpleasant as I had expected. The bowel prep was certainly more aggressive this time, lasting right up until 10 mins before I went down for surgery and it's safe to say I felt utterly rotten. I felt so sick the morning of the op. I was sitting on my bathroom floor next to the toilet thinking oh my goodness, I can't go, I can't leave this bathroom let alone the house. Sheer panic had a hold of me and my anxiety had me sat frozen, pleading with myself to move. It was the toughest battle I've ever had with my own brain before an operation and between you and me, I truly didn...

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 ...

Yesterday I opened my NHS branded letter and a wave of emotion hit me. Its happening, my consultant has finally agreed, I am officially on the list for a hysterectomy. Last month I finished my course of Zoladex injections. 6 months had gone by so quickly. I wasn't particularly sad about it, after all the monthly stabbing wasn't my most favourite appointment to attend, but of course the familiar dread of periods returning and the unknown of the pain levels and how quickly it would hit me was a massive concern. And boy did it hit me fast. I was back to bleeding within a couple of days and my pain levels had started to sky rocket. Previously the injections haven't made too much of a difference but this time round felt different. The daily pain turned into more cyclical pain, reducing the constant ache which clearly made it much more manageable. This was good news, not only for the last few months but also for the stats as to whether a hysterectomy would be effective in the fut...

At the end of last year, I decided I couldn’t wait another 5 months to discuss my latest MRI results in person. I had received a letter saying the adenomyosis was more prominent and for me that was all the confirmation I needed. I wasn’t imagining it, the pain was getting worse and I needed something to be done. I should start by saying I recognise how lucky I am. Not everyone can afford to go private for treatment, especially as a self funding patient. I knew it was going to be pricy but I was at the end of my tether and just needed help. So within a week of enquiring, I was booked in for a consultancy appointment at The Oaks hospital in Colchester knowing I was going to be £180 lighter for a 20 min conversation. Ouch. But hopefully a worthy conversation! Fortunately I was able to see my normal consultant from the NHS privately. However, I was concerned he wouldn’t recognise me or know any of my history, after all he sees hundreds of thousands of women a time, why would he remember me...

And he said, "you have endometriosis so you must know everything about it because people always do, so you know it can't be treated, so what do you want?". After a couple of days of building pain, I woke at 00.45 on Sunday morning with even worse pain and spent the next few hours trying to stop myself from being sick. I've been living with endometriosis for many years now and so I know I can define "normal" pain, and I knew this wasn't it. What was happening? Was it another cyst rupturing? Was it something entirely different? Was it my appendix? So many questions and in the middle of the night definitely no answers. It was going to be a long night. At 07.45 I rang 111 (the NHS non emergency line) and spoke to someone regarding my symptoms. She put me down as needing an immediate call back from a clinician and so I waited. It wasn't too long before I got the second call and discussed the situation. It was highlighted that due to the ongoing COVID situ...

My blogs often focus on the pain or emotion associated with living with a chronic illness. I've spoken about finding myself in the darkest parts of my mind, and the struggle of dealing with emotions that can cause you to spiral. Unfortunately, the majority of us can relate and know exactly how that feels. However, what I haven't spoken about is being on the other side of that mental health, and watching someone you care about go down that all too familiar path. A path of destruction, and into a very very dark place. At the beginning of this year, I found myself in a very surreal and scary situation. One that I wouldn't wish upon anyone. A situation that you can't possibly know how you will deal with until you are there living it. A situation you never want to find yourself in but that too many of us have had to deal with, and a situation that will quite frankly change you forever... Someone I cared very much about took an overdose and tried to end their life.  There are...

As many of you know, this year I embarked on a new challenge and moved from Essex in the UK to sunny Sydney, Australia. It was a huge thing for me to do being so close to my family and friends back home, but I knew it was something I wanted to do for myself. However, I didn't count on there being a global pandemic whilst I did it! A few weeks ago I was given the opportunity to have an article published at work about my experience of moving to the other side of the world during COVID. It turned into a featured piece titled 'Finding the courage to say... "I'm struggling".  I was a little wary of the article being published to the entire firm but it was open and honest. Two things I always want to be. And hey, what was the worst that was going to happen?! Turns out, I had no need to worry and I have received wonderful feedback.  The article has had over 1000 views, many likes and several comments.  I've had emails and phone calls from people I had never even hear...

Its been 7 months since I wrote a blog. A lot has happened since then. I've got a new job. I've moved to the other side of the world to live in Australia. And perhaps most importantly, I've become an Auntie to my gorgeous little nephew Freddie. Back in December I wrote about the journey before he was born. The pregnancy announcement, the baby conversations and the general struggle that I had gone through, but I haven't written since. I had fallen out of love with writing, and I had fallen back into the all too familiar routine of dealing with things on my own and not sharing. That was until last week when I was reminded why I write. I was approached by someone who said that they had been reading my blog. They had related to some of my posts and appreciated the rollercoaster of emotions that were involved in my story. There had been more emotions since and so it was at that point, I decided I needed to pick up the pen (or keyboard) and write another post. But this time, ...

It was a day I had dreaded since I was diagnosed 6 years ago. It was a day that I had tried to prepare myself for so many times before. It was a day that was going to test not only my own emotions but my relationship with one of the most important people in my life too. But that day was never going to be easy, and my goodness, it really wasn't easy. I sat on my sisters sofa and I knew instantly what she was going to say. How did I know, I was making a huge assumption after all, but I just knew what was coming. That instant pain and jealousy stirred in my tummy, that instant need to cry came over me and before she could even say it, I said "you're pregnant aren't you". For those of you that know me, you know that I'm really close to my big sis. Shes two years older than me, and we've always had a very close bond. We've lived together, worked together, and done all the normal things that sisters do with each other. Its always been a case of if you me...

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...

I started this year in a bad place. I sat and read my posts from the beginning of the year, and as I read through my blog, it felt like it was someone else writing them. Statements such as  'I find myself wondering how I will cope with this for the rest of my life' o r ' I don't want to face how devastated I am, or how numb I feel ' or ' I'm not sure I was prepared for my heart to feel this broken '  makes me wonder was that really me writing those things?  I'm not ashamed to say the first 6 months of this year was a tough time and that I was struggling. But perhaps looking back now, I realise how much I was struggling. I was still recovering from my surgery at the end of 2017, and the pain hadn't eased with it. Discussions started about a hysterectomy and I turned to fertility counselling. The realisation that I wouldn't have the one thing I wanted the most started to sink in, and the thought that I would never be rid of this horrid disea...

I’ve been tossing up for a while now whether to write another blog post. It’s been a couple of months since my last update and I’ve neglected my blog since. The truth of it is I’ve used the last three months in Australia to run away from the reality of my situation. I’ve been able to (for the most part) shut off my thinking about the appointments, procedures and operations that are to come in the next couple of years. And it’s been bliss. Yes I’ve had my bad days. And yes at times it’s been a struggle. But I've also been able to just be me, without the endometriosis, without the adenomyosis, and without the heartache that it all brings with it. Having a break from the frequent hospital appointments, the feelings of jealousy and resentment, and the enormity of whats to come was needed. I’ve felt a bit like the old Amy, the Amy who had a life outside of endometriosis, the Amy before everything changed. It’s funny how when you go somewhere different you can change your mindset. It wa...

When people found out I was coming to Australia for 3 months, they said what are you going to do about your health?! My answer was always the same, "I will deal with it when I get home". I think I knew at the time that was a very naive thing to say, but a girl can dream and hope for the best, right?! Of course I knew how these things go really. You can never tell when your next flare up is going to be, and you definitely can't control it. I just didn't want to think about how it could impact my trip. It was a big enough thing for me to do without considering my health side of things too. Plus I'm always so adamant that it doesn't control my life so I wasn't willing to let it be part of my plans for my huge exciting adventure. I've been in Melbourne two and a half weeks now and unfortunately, my body hasn't given me that dream, not even a little bit of it! In actual fact my pain levels have been the worst that they have been in the while. I guess ...

I really wasn't looking forward to my hospital appointment on Thursday. I'm not sure why. Maybe it was because it wasn't that long ago that I was there. Or perhaps it was because I knew the scan was going to be uncomfortable and likely to cause me more pain. I don't know. But I knew I was dreading it. I felt nerves that I hadn't had since my operation but naturally I told myself everything was going to be fine... We got to the hospital early and sat outside in the sunshine for a few minutes before heading up to the ward where my scan was being done. It always feels a bit wrong as an outpatient going to the ward, its where women are at their most vulnerable. Whether they are recovering from surgery or have been admitted for other reasons, its not a nice place to be. I guess its because I can relate to being there and how I felt at the time. The three times I've been on that ward have certainly ingrained that feeling into my brain, and if I could never go back o...