'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 ...

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...

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’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...

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...

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...

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...

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...

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 ...

I'll be the first to admit that I've always been a bit cynical about mental health. All of a sudden everyone had a mental health issue. And sometimes its just felt like an excuse. But I have watched others around me, close friends, go through really tough times. I've ridden the highs and the lows with them too. One minute everything is fine and the next you're trying to calm down the frantic crying person in front you, trying to make them realise that life is worth living. But fortunately I'd never experienced what they were going through for myself. I'd never questioned my life or the future I had mapped out for myself. But I have felt low. Like really really low and I've certainly been to a very dark place all thanks to my Endo and Adeno... Some days you feel like you're on top of the world. Those days usually come with limited pain. And when those days seem to come so few and far between, it really is an amazing feeling. The days where you don't...

Yesterday was the hospital appointment I've been waiting for since February this year. Its been a long and hard 7 months, with my symptoms getting worse and my emotions getting harder to control. I wasn't expecting much from the appointment knowing that my surgery is in 12 weeks time but it still managed to hit me like a train. Reality can be a bastard like that... The statements "We are in desperate times. We have no other options" or "your case of Adenomyosis is the most prominent case I have ever seen, and if I needed to share an example of the disease with my students, yours would be the one I would use" or "I know you’re only 27, but I can now justify doing a hysterectomy" were things I wasn't quite ready to hear. I thought I was, but in reality I’m not sure anyone truly is. I’ve known for a while that my options are pretty non existent. We’ve tried the various hormone treatments, the uterine embolisation and pain medication with no s...

Its been a while. I said I was going to take a couple of weeks off and its turned into almost a month away. It was needed. I was feeling really low. Writing about how I felt has helped me enormously in the past, not only with getting things off my mind but with accepting the cards I had been dealt. But it was actually starting to make things worse for me. I needed to stop letting this disease completely consume me. There is a lot of negativity that comes with living with something you know will never been cured. Not long ago we lost a member of the Endo community. The pain and the lack of help made her feel like there was no other way out. I know what it is like to have dark days, but I hope to never ever feel like there is nothing but complete darkness like she did. And that is part of the reason I write this blog. To help me but to also help others know they aren't alone. So here I am! Back sitting here, writing to you all. Its been a good couple of weeks. A we...

I've had some lovely messages of support since my last blog on Tuesday from friends and family. I really do appreciate all your words and although I am struggling, it does help. Unfortunately, I had to leave work at lunchtime today due to my pain. I had taken painkillers and had a hot water bottle, but whilst I was talking to a colleague at my desk, all of a sudden it felt like my heart was doing somersaults, I felt faint and I was feeling nauseous. I have no idea what it was but my heart was pounding in my chest and I was struggling not to be sick. It was horrid. I hate what this disease is doing to me. Not only that but I'm embarrassed. I don't want people to see me when I'm struggling, especially at work. Some might say I'm too proud, or simply just too stubborn but thats just how I am. I've had the chance of having a natural family taken away from me, so I find it extremely frustrated that its now effecting the one thing I've thrown myself into. My w...

I've had an odd day. First thing I headed into London, suited and booted, ready for an interview for an exciting opportunity at work. I was nervous but excited. I was anxious but determined. And although they didn't give anything away, I was pleased with my presentation. I felt good. The pressure had been lifted and I had done everything I could to give myself the best possible chance. I made my way back to Colchester feeling pretty happy with myself. And then I got a voicemail from the hospital.... As you know I've been waiting for my operation date. I was put in for the op on 5th December 2016. The NHS waiting times state patients should be treated within 18 weeks of referral for the procedure. Keep that in mind when I tell you the next part. The voicemail was advising I finally had a operation date. My first thought "YES!! Finally! Pain free days are coming!". The next part of the voicemail was "you're booked in for 30th November 2017". My nex...

Its been a week for pain. I've written about my flare up over the last few blogs and how its been a testing and intense time. Luckily its not the same every month but one in every few flares, it feels like its never going to end. It drags on and just when you think its easing up, it smacks you back round the face again. Yesterday was our second North Essex Endometriosis UK support group. I woke up in pain but was determined to get myself to the hall as I had been looking forward to it. I was slightly later leaving home that I wanted due to feeling nauseous and struggling with cramps. But I took pills and got myself in my car. I made it across town in good time and parked up down the road from the hall. Just as I got out of the car, I felt horribly dizzy and faint. I grabbed a post by the side of the road and got myself into the passenger side of my car. What the hell! I was so close, please body don't let me fail so close to getting to the group!! After a few minutes of deep...

10th May can only mean one thing, it's my birthday! And what a birthday it's been. For the first time in years I decided to work my birthday. It wasn't all bad as my team took the time  and effort to decorate my desk with LED lit balloons, a banner and a huge badge! They're a good bunch and I hope they know how much it brightened my day. This evening I've been to Miller & Carter with my family and bestie. Wow! What a meal. But damn am I paying for it right now. I knew deep down eating a steak was gonna become a regret but I wanted to treat myself, after all if you can't treat yourself on your birthday when can you! But within 30 minutes I was in cramping hell! By the time I got home I felt sick and my stomach was absolutely screaming at me. It's not the best way to end the day but the food was pretty amazing so it was kinda worth it! Thank you to everyone who gave me wonderful gifts and took the time to wish me a Happy Birthday! I love birthdays beca...

One of the things I dislike about Endometriosis and Adenomyosis (just one of many things!) is the fact you can't physically see whats happening inside. You never truly know if is getting worse. You know your symptoms and how you're feeling, but you don't definitely know its a side effect of the disease or something else. I know that in the last year my pain has steadily been getting worse. The pain level has increased. The amount of time I've taken off work has increased. The days out that I have missed out on has increased. And my sofa surfing time has definitely increased! But what is actually going on inside?! I've started getting a lot more pain on my right side and in particular in the last 24 hours, I've been getting shooting pain in my right shoulder. Its agony and trying to get comfortable is near on impossible. But is it the disease or something else?! I know shoulder pain can be a symptom of endo but what does it mean is happening for me inside?...

It doesn't seem that long ago that I was writing about hitting 10,000 views on my blog. But today I doubled that and am now at over 20,000 views! Wow! I'm humbled by the continued support and response I get to writing my story. It still takes a lot for me to share what is a very personal journey for me, but I appreciate everyones kind words. Thank you thank you thank you! A x