'Its Not The Endo The World...'

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...

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...

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...

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...