'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...

And he said, "you have endometriosis so you must know everything about it because people always do, so you know it can't be treated, so what do you want?". After a couple of days of building pain, I woke at 00.45 on Sunday morning with even worse pain and spent the next few hours trying to stop myself from being sick. I've been living with endometriosis for many years now and so I know I can define "normal" pain, and I knew this wasn't it. What was happening? Was it another cyst rupturing? Was it something entirely different? Was it my appendix? So many questions and in the middle of the night definitely no answers. It was going to be a long night. At 07.45 I rang 111 (the NHS non emergency line) and spoke to someone regarding my symptoms. She put me down as needing an immediate call back from a clinician and so I waited. It wasn't too long before I got the second call and discussed the situation. It was highlighted that due to the ongoing COVID situ...

It didn't take long for me to be back here writing about my next operation. It only feels like last week that I was going through recovery from my last one. Its actually been 15 months since then but that certainly doesn't feel long enough to be facing another nerve wrecking encounter at my least favourite place! However, 4 weeks tomorrow I shall be doing exactly that. It marks my fourth operation in the last 5 years. This time I am going in for a  cystoscopy with hydrodistention. For those who have just said what's that, its a procedure where they put a camera in the bladder, and then use fluid to stretch the bladder.  Why am I having this lovely sounding op you ask, well its primarily to see if I have another chronic condition called Interstitial Cystitis which could be contributing to my daily pain. if I am diagnosed its another step to managing my pain before committing to the final hysterectomy. Whilst potentially adding another condition to my brok...

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...

When people found out I was coming to Australia for 3 months, they said what are you going to do about your health?! My answer was always the same, "I will deal with it when I get home". I think I knew at the time that was a very naive thing to say, but a girl can dream and hope for the best, right?! Of course I knew how these things go really. You can never tell when your next flare up is going to be, and you definitely can't control it. I just didn't want to think about how it could impact my trip. It was a big enough thing for me to do without considering my health side of things too. Plus I'm always so adamant that it doesn't control my life so I wasn't willing to let it be part of my plans for my huge exciting adventure. I've been in Melbourne two and a half weeks now and unfortunately, my body hasn't given me that dream, not even a little bit of it! In actual fact my pain levels have been the worst that they have been in the while. I guess ...

I really wasn't looking forward to my hospital appointment on Thursday. I'm not sure why. Maybe it was because it wasn't that long ago that I was there. Or perhaps it was because I knew the scan was going to be uncomfortable and likely to cause me more pain. I don't know. But I knew I was dreading it. I felt nerves that I hadn't had since my operation but naturally I told myself everything was going to be fine... We got to the hospital early and sat outside in the sunshine for a few minutes before heading up to the ward where my scan was being done. It always feels a bit wrong as an outpatient going to the ward, its where women are at their most vulnerable. Whether they are recovering from surgery or have been admitted for other reasons, its not a nice place to be. I guess its because I can relate to being there and how I felt at the time. The three times I've been on that ward have certainly ingrained that feeling into my brain, and if I could never go back o...

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...

Its been over a month since my last post. Why? Well, in all honesty, I was struggling with writing about Endo when it was consuming so much of my time and thoughts already. Trying to put it down on paper (or on a computer in this case!) was very hard and I have always said I would only continue with my blog when it was working for me. It was meant to help, not hinder me. There was so much hope and optimism that my surgery would make a difference to my pain, and so when it didn't, it was a massive disappointment. Not just for me but those around me too. Things have been tricky, and as I wrote in my previous posts, the reality of the big op happening is very slowly sinking in. However, as it sinks it, it means I can also start to process it and get my head around the emotions that come with it. That comes with time and the break has been good for me. For a while it felt like everything was very negative but we're on the up. So here I am, I'm back and typing away... So whats...

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...

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...

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...

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...

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...

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...