'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...

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, ...

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...

It was two weekends ago that my pain was even worse than usual. It had been building for over a week and so reluctantly I gave in and made an appointment at my GP surgery on the Sunday morning. I went in and was checked over. Nothing unusual was found but I was advised to get back to my gynae as soon as possible and an internal scan was requested to see what was going on. I was sent away with 100 codeine tablets and 84 anti sickness pills. I was definitely going to rattle! With the shed load of pills, I was also given the advice that if the pain got worse to go straight to A&E. Well, 4 hours later thats where my sister and I were sitting. Great. Just where everybody wants to be on a Sunday night! We spent 5 hours at the hospital. I was checked over again and had bloods taken. It was busy as always. Just before they were going to get a gynae consultant to see me, they asked for a urine test. Now I had done one at the doctors in the morning but I obliged naturally. Just as well the...

This week marked 13 weeks since my excision surgery. In some ways it feels like a lifetime ago but equally it also only feels like yesterday. The fact I'm not back at work full time doesn't help with that feeling but its what my body needs and I know I should listen to it, as difficult as that can be. However, in listening to my body this week I've also started to wonder, is the Endo back already? Last Friday as I got up to start preparing some food for dinner, I had a stabbing sensation in my lower left abdomen. As per the normal reaction for cramps, I bent over and crouched down praying for the pain to pass. But it didn't. In fact it got worse, to the point where I ended up simply just sitting in the middle of the kitchen floor. Every time I moved, the pain intensified making me feel sick and filling me with panic. I started to wonder how I was going to get off the floor. I even started thinking about how dreadful spending a night in A&E was going to be! Luckily...

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...

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...

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