'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...

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...

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...

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...

Its been over a month since my last post. Why? Well, in all honesty, I was struggling with writing about Endo when it was consuming so much of my time and thoughts already. Trying to put it down on paper (or on a computer in this case!) was very hard and I have always said I would only continue with my blog when it was working for me. It was meant to help, not hinder me. There was so much hope and optimism that my surgery would make a difference to my pain, and so when it didn't, it was a massive disappointment. Not just for me but those around me too. Things have been tricky, and as I wrote in my previous posts, the reality of the big op happening is very slowly sinking in. However, as it sinks it, it means I can also start to process it and get my head around the emotions that come with it. That comes with time and the break has been good for me. For a while it felt like everything was very negative but we're on the up. So here I am, I'm back and typing away... So whats...

It was two weekends ago that my pain was even worse than usual. It had been building for over a week and so reluctantly I gave in and made an appointment at my GP surgery on the Sunday morning. I went in and was checked over. Nothing unusual was found but I was advised to get back to my gynae as soon as possible and an internal scan was requested to see what was going on. I was sent away with 100 codeine tablets and 84 anti sickness pills. I was definitely going to rattle! With the shed load of pills, I was also given the advice that if the pain got worse to go straight to A&E. Well, 4 hours later thats where my sister and I were sitting. Great. Just where everybody wants to be on a Sunday night! We spent 5 hours at the hospital. I was checked over again and had bloods taken. It was busy as always. Just before they were going to get a gynae consultant to see me, they asked for a urine test. Now I had done one at the doctors in the morning but I obliged naturally. Just as well the...

I've never been very good at talking about my feelings, especially face to face. I can't find the words. I get flustered. And my emotions take over. But luckily I can write them down instead so here goes... I've had a bad few days. I've been massively frustrated with my situation. That includes my body, my mindset, people, work, the lot! I've let anger take over and at times its been misdirected. I've been so upset and annoyed that I've lost myself. I've hated the world and I've hated people too. Its bought me to tears and I've allowed it to consume me. I've let my own insecurities and worries take over. I've let myself believe the worst of people, people who I call my friends. And none of that is okay. I've been determined from day one that Endo/Adeno wouldn't dictate my life, but I'm seeing that it does more and more. And even more frustratingly, its completely out of my control. When you are someone who is extreme...

Thursday I woke up feeling unusually low. My pain had been worsening as the week was going on and the realisation that my consultant may have been right, and that my pain was in fact due to the Adenomyosis and not the Endometriosis, meaning the operation wasn't going to provide me with the relief I was praying for, was starting to sink in. I had an early orthodontist appointment so knew I needed to get up. It was a struggle. The pain in my tummy was intense and I felt nauseous with it. I needed to leave at around 8.30am, and I was still sitting at home at 8.45am wondering how I was going to make my appointment in 25 minutes. I was so close to giving in and calling up to cancel. My body wasn't going to be my friend and with my mindset, I certainly didn't feel like I had the fight in me to go to battle with it. Luckily my stubbornness took over and told me to get my arse in the car and to the appointment. Fortunately the traffic was on my side and I made it with a minute to s...

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 ...

Its all becoming a bit real now. Its when you start discussing the consent form whereby stats such as 1 in 10 women will wake up with a temporary colostomy bag after surgery, that things really start to hit home. Its when you've been waiting for this operation for a year and then all of a sudden its less than 2 weeks away and you're sitting in your pre op appointment getting your dietary information and bowel prep, that you start to panic about whats to come over the next few months. Its when its consuming every free minute of your waking day making your mind go over and over the potential risks, that you start wishing it was still a year away and not 2 weeks to go. Yep its definitely becoming all very real now. On Tuesday I had my pre op admission appointment at the hospital. It started off with a chat with my consultant confirming what we were going to be doing as part of the surgery. I was advised I may wake up with a drain coming out of my side in case there is an excessi...

When you're in pain on a daily basis, and the level of pain has increased over the last year, you know its got worse. Thats obvious surely?! But strangely, even though I know that makes sense and appears to be obvious, its the confirmation of someone telling you that its exactly the case that I struggle with. I've had it before with previous appointments and I've had it again today. I guess its the information finally sinking in. Its the idea that you could be imagining it disappearing and the realisation that how you've been feeling is actually fact. So when I had my MRI scan results through today that realisation hit again. I had my scan a few weeks back, remember, the one where I hit the panic button and got pulled out of the machine! Haha. Well I got a snippet of my report through via email today. It was a lot of medical jargon that I have no idea about but it was the small summary at the end that basically summed it up. A 5cm cyst, a new 2.5cm possible fibroid an...

Its been a busy few weeks for me and my body so I thought I would update you all on whats been happening in my world. A couple of weeks ago, I had my third MRI scan. I usually have them on a yearly basis to see how my Endo and Adenomyosis is progressing. My consultant likes to call them my MOT! For all of you who have had an MRI, you'll appreciate how tiny that damn machine is, so its never something I look forward to. I don't know whether I was feeling particularly anxious that day, but for the first time I had to press the buzzer to get out of the machine. Ugh embarrassing much! I couldn't calm my breathing and I felt sick with panic, I just had to get out of there. Its unusual for me and as always, my stubborn mind told me to get straight back in there and to finish the scan after a few minutes of fresh air. It was a long 60 minutes but I got there in the end! I know that I'll have many more scans, and no doubt I'll also have to press the buzzer again in the fu...

We all know the frustrations we feel when an endo flare up hits. And it's always when we least expect or want it to happen! I've struggled with the frustration element massively but I've learnt along the way the importance of accepting it and trying not to feel guilty for the disease. The below article is a great read on 5 tips for self care during a flare up. Have a read and see what you think. https://themighty.com/2017/08/endometriosis-flare-how-to-practice-self-care/ What are your self care tips? A x

Yesterday bought the fourth of our North Essex Endometriosis UK support meetings and a chance to meet up with the ladies I now am lucky enough to consider my friends. As always we covered some interesting topics but one in particular really made me think about my situation. Infertility and acceptance. As you know many women with Endometriosis suffer with infertility, and for those of us with Adenomyosis we often face the prospect of a hysterectomy at some point in our lives. For many, that is a bitter and hard pill to swallow, regardless of your age. But as one of those women who were diagnosed and given this news at an early age, I have felt like a ticking time bomb ever since. The question was asked in the group yesterday whether having the diagnosis at an earlier age would have been preferable from a fertility point of view compared to someone who was diagnosed with Endo at a later age... When I was given the news at the age of 23, I was insta...