'Its Not The Endo The World...'

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...

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 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 brok...

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...

I have no idea where the past year has gone. It only feels like yesterday that we were leaving 2016 behind us and looking forward to what 2017 was going to hold. As I look back, theres been a lot of good that has come my way, but I also recognise that its been a pretty tough year too. My health has taken up a huge part of my year, and not in a good way. I spent the majority of the year waiting for my operation, but as I was doing so my health deteriorated quite considerably. I've had multiple days out of the office, and missed out on family/friend engagements more than ever before. I've had many trips to the doctors or hospital, whether thats through unexpected pain or planned appointments. Finally, and perhaps the biggest bump in the road, was the confirmation that my consultant can now justify the hysterectomy that no one wants to think about, but that is inevitable in the next couple of years.  Its been a rollercoaster ride, one that has tested my positivity and at ti...

Firstly I want to start by thanking everyone for continuing to follow my blog. This is my 100th post which is insane! I started this not knowing if anyone would ever read it and now so many of you send me lovely supportive messages which are an amazing lift when I need it. So thank you thank you thank you! Its been a busy week. I've been away training on my Global Talent Programme in Cambridge with my fellow cohort members. Its been tough but I've really enjoyed myself. Not only that but it came at just the right time to provide me with the perfect distraction with the impending operation next week. Naturally my body didn't quite let me forget and I've felt pretty rough especially yesterday when I was feeling horribly sick. Its been the first time in a while that my tummy has been so bloated that I've been unable to do my trousers up and the pain was pretty intense with it too. As always, with the feeling unwell, along came the frustration with it. This diseas...

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...

My Grandparents wrote me a little poem so I thought I would share it with you all... OUR AMY It’s Endometriosis, Endo for short Something your born with, It cannot be caught Affecting just women, With no signs to show The men are so lucky, They just don’t know how The women who has it, They say one in ten There’s not much to help them, The condition to stem Endo is bad But there is Adeo as well If you have them both It does make life Hell Our Grand-daughter has them both And we know she’s in pain Just what is Life there for, It happens again and again We Love her so much And stand by her side She’s a Lovely Young Lady, And her Grandparents Pride SHE’S AMY Forever grateful for my family and friends who continue to support me through this horrid disease. A x

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

I don't know whats happened this week but it feels like its been pretty hard going. I can't even say its been anything in particular. I've just found work draining. And my tolerance levels have been questionable. The afternoons have hit me like a tonne of bricks. Its been an overly frustrating week, and although I'm all for repping the positive vibes thing, sometimes its easier said than done. I think I rely on others around me being positive and when that starts to fall, I struggle to go with it too. I know I haven't been sleeping well so perhaps its just me being tired and grumpy too. I'm just glad its Friday, put it that way. A x

So I had my hospital appointment at 9am this morning to discuss my bowel endometriosis. I sat down with a nurse practitioner who was very attentive and informative. She explained the different options that may occur in my excision surgery at the end of the year. Below I have detailed these with a little help from Endometriosis UK website (thanks!). There are essentially three surgery options for bowel endometriosis, which will be tailored to an individual’s needs: Affected areas or nodules can be “shaved” off the bowel leaving the bowel intact. This option may leave residual endometriosis. For smaller areas of endometriosis, the disc of affected bowel is cut away followed by the closure of the hole in the bowel with stitches. The affected segment or section of bowel is removed and the bowel is re-joined (re-anastomosis). There is a possibility that a temporary colostomy will be needed. However, I was told this is rare and would only be required for 6 weeks. Some complica...

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

Well May hasn't started too badly but my goodness I am tired! Monday I went to see The Shires which meant a late night and 5.5 hours sleep which hasn't set me up very well for the busy week I am having. However, I won't let tiredness stop my productivity! I had a great day at work and smashed out a load of work which has put me in a pretty good mood. Off to London again tomorrow so that'll add to the tiredness some more but these things have got to be done. Today I ordered my Endo Co bracelet which is in the pic below. I'm super excited to get my hands on it so am hoping it arrives quicker than the 10-15 business day delivery it states!! You can find the bracelets for sale at the link below. 30% of the proceeds will be donated to the Endometriosis Coalition to help raise awareness and research.  https://www.motif.me/collections/trending-the-endo-co/products/the-endo-co-bracelet-10001497 A x

Its been a busy but positive few days. Friday was a productive and successful day, I managed to sort my mortgage and save myself some pennies. Plus I received a phone call which contained some feedback from work which was so positive and uplifting. I worry about my work sometimes and the impact this disease has on how I perform at my role, including the time I miss due to being unwell. So its a massive boost when I hear that people think I'm doing so well. Saturday I woke up nervous because it was my first Endometriosis UK Support Group. The idea of walking into a place where I don't know anyone is always daunting but I promised myself I would make the effort to attend. Well, I don't know what I was worried about! Everyone was really lovely and I'm looking forward to the next meeting already. The only problem was I had to leave halfway through because typically my little Pebbles got ill and needed to be taken straight to the vets! £95 and over an hour in the waiting...

This morning I read an interesting article that Endometriosis Australia posted on Facebook. As a sufferer of Bowel Endometriosis and someone who is waiting for the excision operation mentioned, I found it really useful. Have a read here:  https://www.endometriosisaustralia.org/single-post/2016/10/07/Endometriosis-and-the-Bowel A x

Day 4 of migraine and day 10 of having a headache. The left hand side of my head has taken quite a battering over the last 4 days. And I'm still struggling. I must rattle with the amount of pills I've taken to try and ease this migraine. I've lived in my glasses that  I usually only wear at work when I'm working at the computer screen. What a nightmare its been! Its not just the feeling unwell thats annoying. On Friday I was due to have my next set of braces from the Orthodontist but with the migraine they didn't want to do the prep work that was required. Now I'm already 4 weeks behind schedule for my teeth which is frustrating. It also means another weekend out of the gym, which makes it 3 weeks out of doing something I enjoy. Not helping my mood! And to top it off today I was due to be at the London Marathon with my family and bestie. Instead I'm home watching it on the TV whilst on the sofa and my family are there enjoying themselves. I've sp...

I'm sitting here in my gym wear writing this post. I should be at the gym, I want to be at the gym and yet my body has other ideas. I've cried through frustration this morning. And as I was told to "pull your shit together" the tears flowed more and anger set in. It hit a nerve and so now I'm a "crazy bitch" too. I know it wasn't meant to be nasty. I know it was just trying to get me motivated to get to the gym and to stop feeling so frustrated that my body hasn't let up on pain for the last 3 days. Every day I've wanted to get to the gym and every day I've had to give in and watch others do what I want to be doing. I've learnt more than ever that I have to listen to my body and not push myself too hard. But do you know how frustrating that is?! To watch everyone around you do what you want? To watch people never be able to understand the feelings you have because you have this rotten disease that is eating you from the inside? It...