'Its Not The Endo The World...'

I started this year in a bad place. I sat and read my posts from the beginning of the year, and as I read through my blog, it felt like it was someone else writing them. Statements such as  'I find myself wondering how I will cope with this for the rest of my life' o r ' I don't want to face how devastated I am, or how numb I feel ' or ' I'm not sure I was prepared for my heart to feel this broken '  makes me wonder was that really me writing those things?  I'm not ashamed to say the first 6 months of this year was a tough time and that I was struggling. But perhaps looking back now, I realise how much I was struggling. I was still recovering from my surgery at the end of 2017, and the pain hadn't eased with it. Discussions started about a hysterectomy and I turned to fertility counselling. The realisation that I wouldn't have the one thing I wanted the most started to sink in, and the thought that I would never be rid of this horrid disea...

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...

Thursday I woke up feeling unusually low. My pain had been worsening as the week was going on and the realisation that my consultant may have been right, and that my pain was in fact due to the Adenomyosis and not the Endometriosis, meaning the operation wasn't going to provide me with the relief I was praying for, was starting to sink in. I had an early orthodontist appointment so knew I needed to get up. It was a struggle. The pain in my tummy was intense and I felt nauseous with it. I needed to leave at around 8.30am, and I was still sitting at home at 8.45am wondering how I was going to make my appointment in 25 minutes. I was so close to giving in and calling up to cancel. My body wasn't going to be my friend and with my mindset, I certainly didn't feel like I had the fight in me to go to battle with it. Luckily my stubbornness took over and told me to get my arse in the car and to the appointment. Fortunately the traffic was on my side and I made it with a minute to s...

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...

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...

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...

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'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...

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 ...

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

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?...

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...

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...