'Its Not The Endo The World...'

Well, here we are 3.5 weeks post "the big op". 3.5 weeks since I lost a part of me. 3.5 weeks since my world changed. But most importantly, 3.5 weeks since my journey to living again started. The day itself came round very quickly. The months notice I had went by in a flash, and before I knew it, I was laying in the hospital. I started my op prep a couple of days before the big day, it was as unpleasant as I had expected. The bowel prep was certainly more aggressive this time, lasting right up until 10 mins before I went down for surgery and it's safe to say I felt utterly rotten. I felt so sick the morning of the op. I was sitting on my bathroom floor next to the toilet thinking oh my goodness, I can't go, I can't leave this bathroom let alone the house. Sheer panic had a hold of me and my anxiety had me sat frozen, pleading with myself to move. It was the toughest battle I've ever had with my own brain before an operation and between you and me, I truly didn...

My blogs often focus on the pain or emotion associated with living with a chronic illness. I've spoken about finding myself in the darkest parts of my mind, and the struggle of dealing with emotions that can cause you to spiral. Unfortunately, the majority of us can relate and know exactly how that feels. However, what I haven't spoken about is being on the other side of that mental health, and watching someone you care about go down that all too familiar path. A path of destruction, and into a very very dark place. At the beginning of this year, I found myself in a very surreal and scary situation. One that I wouldn't wish upon anyone. A situation that you can't possibly know how you will deal with until you are there living it. A situation you never want to find yourself in but that too many of us have had to deal with, and a situation that will quite frankly change you forever... Someone I cared very much about took an overdose and tried to end their life.  There are...

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...

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...

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...

Firstly I want to apologise for my lack of blogging recently. I feel like my life is being consumed by this frigging disease. Daily I contend with not feeling myself and dealing with the pain. When I see people they ask how I am and want to know updates (which I appreciate!). And even simple conversations at work about pregnancy can turn my day upside down. So to come home and write about it as well, just seems to be extra hard work. I go away in a week and a half so I won't be blogging then either, but I'm going to take a break from now for a while. I'm going to take some time for myself. I know there are things that I want to investigate, such as adoption, but I also want some time to not think either. I want to try and give myself some time away from thinking about this dreaded disease and I hope my body will allow me to do that too. Don't worry, I will be back and I'd like to thank everyone who continues to follow my journey and read my blog. Rest up....

I wanted to write a quick blog to thank all those people who have supported me and continue to do so through my good and bad days. I've struggled over the last couple of weeks with not only pain, but with feeling pretty low with it too. Everyone tells you to keep positive but when you're stuck in that rut, you don't know how. I've always said friends and family are what get me through my worst days and I still 100% stand by that. Without you all, I don't know what I would do. From the bottom of my heart, I thank you. 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...

Wow what a week!! Its been stressful and exhausting, but equally motivating and invigorating! This week I have learnt new skills and dealt with difficult and challenging situations. But I've succeeded in each one. I may be knackered but it makes me excited for what the future may hold in my professional career. I've always been keen to develop and move up in my role, but this week I've proven that not only is it possible, but that I am also able to do so in the middle of a raging endo flare up! Now that is a definite accomplishment! My pain is still pretty horrendous. The burning stomach won't ease up and it feels like its weighing me down. I know that stress seems to make it worse so fingers crossed a chilled weekend will help improve my symptons. Until then, I just need to persevere with it. I'm looking forward to the weekend. Tomorrow is the North Essex Endometriosis UK support group that I wrote about at the beginning of the week, with guest speaker Mr Barry...

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 ...

Hope you've all had a lovely bank holiday weekend. Its flown by but its been a good one. Plenty of sunshine, family and friend time, plus the added bonus of a successful house valuation today. Exciting times ahead! Next Saturday, 3rd June, brings the second of our North Essex Endometriosis UK support groups. This months includes a guest speaker, one that I know pretty well! My Consultant, Mr Barry Whitlow, who is a Gynaecologist and Endometriosis surgeon.  I'm looking forward to seeing the ladies again but I'm particularly looking forward to seeing what Mr Whitlow brings to the group. The session is open to anyone, those who suffer and those who know women who suffer. Come along for tea and biscuits and to meet other women in the same position. The support group runs 10am - midday, at Myland Parish Church Hall, Colchester. Hopefully see some of you there. A x

I know I need to write a blog, I'm just struggling with knowing what to write. I could talk about how tired I am recently and that there seems to be no let up. But thats not new. I could talk about my lack of motivation, and that everything is taking a lot of effort. But thats not particularly new either. I could talk about my frustration about my lack of hospital date, and how every day I get in from work I look longingly for a letter on the doormat from the postman. But again, thats not new. Basically, theres not much new stuff going on at the moment. I've been spending quality time with family and friends, and working hard at work. I did receive my The Endo Co bracelet this week which was a perfect little treat. Its so lovely and I would highly recommend ordering one, especially as some of the proceeds goes toward Endometriosis research. Find out how here .   Hope everyone is keeping well. And remember, in Ellen's words, be kind to one another. 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

Its been a quiet few days after my birthday craziness. Thursday after my hospital appointment, Bex and I headed into London to see John Mayer at the O2. It was a good night but I was still struggling a lot with pain after my birthday meal on Wednesday. It was also a late night which I have paid for since. So the last couple of days has involved a lot of sofa time and relaxing at home. After having the reaction to the steak the other night, I am more motivated than ever to get my diet back on track to help ease the pain. I have been eating plenty of veg and avoiding anything I know is going to make my flare any worse than it has been. Luckily, the pain has eased up now, although I'm still bloated. Its my first full week at work this week, since the beginning of April. I've been using holiday up and now the new holiday year has begun so its time to knuckle down and push on with my project. Hopefully my body will allow me to do that. Still no movement on my operation date an...

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...

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?...