'Its Not The Endo The World...'

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...

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 ...

Wow. Has it really been a week already since my operation?! OK so yes I am feeling it but I honestly don't know where that time has gone. But I promised I would give you all an update on what has happened etc so let me start from the beginning... Bowel prep. Yes thats where I am going to start. And yes it really was as horrendous as I was expecting. Naturally seeing as it wasn't a pleasant experience, they make you go through the process twice. So Wednesday night, I hid myself away and again on Thursday morning at 5am I did the same. Theres not much more to say on the subject apart from I don't want to see another enema for a very VERY long time. I got to the hospital at 7am on the Thursday morning. Nervous and anxious for what the day was to hold, my parents and sister accompanied me to my place on the ward. I eventually had a nurse come and see me to start the process of getting ready, and before I knew it I was in my gown, with my stockings on, waving goodbye to my f...

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

Its been a while since I've been online. In all honesty I've been struggling with giving Endometriosis more of my time then it deserves. When I started this blog it motivated me and I genuinely felt like it was helping me. But recently, its been the last thing I've wanted to do. Why do I want to talk about something that has already taken so much from me. Why would I want to talk about something I have nothing positive to say about. Why would I spend my time writing about something that has consumed so much of my time already...Well, I guess I probably write about it for all three of the reasons that I've just written. So here I am, writing, again. Its been a few months since I had a real bad flare up. 6 months in fact. I've been fortunate to be able to deal with the general day to day pain. Even when it creeps up on me and hits me a little harder, I've been able to cope. Managing it with over the counter pain medication and choosing to be stubborn...

Hi All, Just a reminder that tomorrow hosts our next North Essex Endometriosis UK support group. Come along 10.00 - 12.00 at Myland Parish Church Hall, Colchester. Absolutely everyone is welcome, so please come along for a cuppa and a biccie. Hope to see some of you there! A x

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...

Whats worse than a stressful day at work? A stressful day at work with a nasty endo flare up. Whats worse than a stressful day at work with a nasty endo flare up? A stressful day at work with a nasty endo flare up and coming home to clear up cat sick on your bedroom floor. Whats worse than a stressful day at work with a nasty endo flare up and coming home to clear up cat sick on your bedroom floor? All of the above plus standing in some cat sick you didn't see!!!! And whats even worse than all of the above? Not being able to come home and enjoy a gin and tonic to help the above because it'll make your pain even worse!! My pain levels are through the roof today. It was bad yesterday but my goodness I am struggling right now. The constant heavy, burning tummy ache is making it hard to walk. Everything takes effort and I'm running on the last fumes in my energy tank. I was awake at 4am this morning which is typical for when I'm having a flare. I also have to wee a ...

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

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...

Its always hard for people to know how to deal with someone who has Endometriosis. What do you say? You can't say anything that will help the feelings of loss and sadness of dealing with a lifelong disease. What can you do? You can't take away the pain that they suffer with day in day out. How can you help? You can't do anything whilst they are curled up in pain high on meds. Its easy to think you can't help or say the right things. But remember, those of us who suffer do hear the nice things you say to us when we're feeling low. We do recognise that you would take the pain away if you could. And we do appreciate all the things you do to help make our lives easier. This post was a great read and gives some pointers if you're wondering how to help! Have a read here:  https://ribbonrx.com/2016/12/03/how-to-support-a-loved-one-who-has-endometriosis/ Thank you to all those that support me. A x

YES!!! I made it back! After 3 long frustrating weeks, I got my arse into gear and got back in the gym this morning. Its amazing how much of a boost it gives you when you finally get something done that has been annoying you SO much. On top of that I got to go for breakfast with my best friend and actually enjoy it without feeling sick or bloated after eating! Woohoo! I've got a busy few days off ahead. Tomorrow food shop and popping into town, Saturday I have the first North Essex Endometriosis support group set up by Endometriosis UK. Sunday I'm off to the Grand Designs Show at the Excel in London and Monday is finished off with a meal and seeing The Shires at the Ipswich Regent. I'm excited for the next few days. Its a good feeling after feeling low and groggy for the last couple of weeks. Fingers crossed the positiveness continues... A x

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...