'Its Not The Endo The World...'

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...

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...

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...

Its been a busy few weeks for me and my body so I thought I would update you all on whats been happening in my world. A couple of weeks ago, I had my third MRI scan. I usually have them on a yearly basis to see how my Endo and Adenomyosis is progressing. My consultant likes to call them my MOT! For all of you who have had an MRI, you'll appreciate how tiny that damn machine is, so its never something I look forward to. I don't know whether I was feeling particularly anxious that day, but for the first time I had to press the buzzer to get out of the machine. Ugh embarrassing much! I couldn't calm my breathing and I felt sick with panic, I just had to get out of there. Its unusual for me and as always, my stubborn mind told me to get straight back in there and to finish the scan after a few minutes of fresh air. It was a long 60 minutes but I got there in the end! I know that I'll have many more scans, and no doubt I'll also have to press the buzzer again in the fu...

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

I'll be the first to admit that I've always been a bit cynical about mental health. All of a sudden everyone had a mental health issue. And sometimes its just felt like an excuse. But I have watched others around me, close friends, go through really tough times. I've ridden the highs and the lows with them too. One minute everything is fine and the next you're trying to calm down the frantic crying person in front you, trying to make them realise that life is worth living. But fortunately I'd never experienced what they were going through for myself. I'd never questioned my life or the future I had mapped out for myself. But I have felt low. Like really really low and I've certainly been to a very dark place all thanks to my Endo and Adeno... Some days you feel like you're on top of the world. Those days usually come with limited pain. And when those days seem to come so few and far between, it really is an amazing feeling. The days where you don't...

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...

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

Yesterday bought the fourth of our North Essex Endometriosis UK support meetings and a chance to meet up with the ladies I now am lucky enough to consider my friends. As always we covered some interesting topics but one in particular really made me think about my situation. Infertility and acceptance. As you know many women with Endometriosis suffer with infertility, and for those of us with Adenomyosis we often face the prospect of a hysterectomy at some point in our lives. For many, that is a bitter and hard pill to swallow, regardless of your age. But as one of those women who were diagnosed and given this news at an early age, I have felt like a ticking time bomb ever since. The question was asked in the group yesterday whether having the diagnosis at an earlier age would have been preferable from a fertility point of view compared to someone who was diagnosed with Endo at a later age... When I was given the news at the age of 23, I was insta...

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

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

I'm not sure why but this afternoon has caught up on me and I feel like I've been hit by a train. My pain has been relatively bad over the last couple of days but its continued to creep up on me and now its pretty intense. I've come home, got straight in my comfy clothes and plonked myself on the sofa. I know I've got an evening ahead of trying to perfect an application that I'm writing for a new opportunity at work. I worked on it until 9pm last night and spent another hour on it on Sunday. I really want this. But my goodness I am SO tired. Fingers crossed it'll be worth it. I've received a letter from the hospital today regarding my appointment last week. Its addressed to my Consultant and details the fact I am struggling with pain more and more. Hopefully it'll give him a little push a long the way to getting the surgery booked in. Who knows, it may even be sooner than I'm thinking.... nahhh who am I kidding. Still a date later in the year wou...

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...