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Post Op Update

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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 previous…

Operation Number 4

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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 broken list is slightly d…

2018

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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' or '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 disease consume…

I'm coming home...

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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 was…

Aussie trip

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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 a…

Its official

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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 on…

Hospital Appointment number... lost count!

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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 …