'Its Not The Endo The World...'

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...