'Its Not The Endo The World...'

Yesterday I opened my NHS branded letter and a wave of emotion hit me. Its happening, my consultant has finally agreed, I am officially on the list for a hysterectomy. Last month I finished my course of Zoladex injections. 6 months had gone by so quickly. I wasn't particularly sad about it, after all the monthly stabbing wasn't my most favourite appointment to attend, but of course the familiar dread of periods returning and the unknown of the pain levels and how quickly it would hit me was a massive concern. And boy did it hit me fast. I was back to bleeding within a couple of days and my pain levels had started to sky rocket. Previously the injections haven't made too much of a difference but this time round felt different. The daily pain turned into more cyclical pain, reducing the constant ache which clearly made it much more manageable. This was good news, not only for the last few months but also for the stats as to whether a hysterectomy would be effective in the fut...

It was a day I had dreaded since I was diagnosed 6 years ago. It was a day that I had tried to prepare myself for so many times before. It was a day that was going to test not only my own emotions but my relationship with one of the most important people in my life too. But that day was never going to be easy, and my goodness, it really wasn't easy. I sat on my sisters sofa and I knew instantly what she was going to say. How did I know, I was making a huge assumption after all, but I just knew what was coming. That instant pain and jealousy stirred in my tummy, that instant need to cry came over me and before she could even say it, I said "you're pregnant aren't you". For those of you that know me, you know that I'm really close to my big sis. Shes two years older than me, and we've always had a very close bond. We've lived together, worked together, and done all the normal things that sisters do with each other. Its always been a case of if you me...

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...

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...

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...

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 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...

I've been struck down by the dreaded "common cold" since Friday evening. I have my Bestie to thank for bringing the germs in the house and turning me into a snotty grotty sneezing machine. Still, I don't let Endo beat me so I definitely won't let a silly cold. On the plus, my pain has been a bit more manageable. Had some bad moments today but on the whole it isn't as intense as the last couple of weeks. I would have been due my next Prostap injection today and I finished my HRT so it will be interesting to see how I feel over the next few weeks as the hormones start to rebalance. Got my scan date through for 15th March. Not too long to wait. Really want to know if they find more cysts. Kinda hoping they do as it would explain the increased pain. But lets see. March is almost upon us which means its the month to share the word about Endometriosis. What are you doing to get involved? A x

When I woke up this morning at 5.30am and knew I was still in pain, I was heartbroken. I didn't want to waste another day feeling sorry for myself under a blanket in pain. When I went downstairs and my Bestie asked how I was feeling and I responded saying the same, her response was "you don't look unwell". She followed on by saying I was always smiling and its only since I started this blog that others really appreciated what this disease was putting me through. I've always been pretty discreet about it all. I've never wanted to be seen to complain and I've never been particularly forthcoming with the details on my illness unless someone asks. For most people, the mention of anything that involves "womens stuff" is enough to put them off asking any more questions. I am feeling a bit better today, I can see light at the end of the tunnel (or this flare up at least). I'm still poorly, but not like the last few days thankfully. I've got ...

Firstly, I know I've been a bit slack with my posts in the last week or so but I haven't been feeling my best. It started on Saturday. I mentioned in my post that I was struggling wth the pain and spent a large amount of the weekend under my blanket with a hot water bottle. It was deemed a water infection and I was prescribed 7 days of antibiotics. Well yesterday I left work at lunch because I was still feeling poorly. My head was pounding and I felt sick. I thought it was all to do with the water infection so when I woke up in even more pain today it started to ring alarm bells. I rang my Doctors first thing and got an appointment with a Nurse at 10am. Luckily for me, my Ma came to pick me up. My symptoms had changed since the weekend. I had a particularly bad pain in my lower right abdomen, low into the groin. I had generalised pain across my tummy and in my back/sides. I also felt very sick. Upon arrival at the Doctors, the Nurse stated that due to my symptoms and th...

Thats what it feels like at the moment. Yesterday I mentioned that I was on the sofa feeling like I was being punished after completing the tasks that I planned for the day. Well it turns out I have ANOTHER water infection. I spent my Sunday afternoon at the Walk in Centre waiting for some antibiotics. I've had them enough to know the symptoms. I think I just like to stick my head in the sand sometimes. Doesn't everyone at some point?! Well I asked the Doctor what I can do to prevent these recurring infections. His response was "well if its the endometriosis causing them, theres nothing you can do." Well thats just great isn't it! This disease continues to throw more and more curveballs my way. I just wonder when they'll stop. So another 7 days of 4 tablets a day and another £8.40 spent on a prescription. Endo is getting more and more expensive for me it would seem. But needs must. My parents have bought me a TENs machine to see if it gives me some relie...

Hi All, Today I've been investigating how to keep track of my symptoms and diet so I can help determine if I have certain triggers that make the pain worse. I've got two apps that I'm testing on my iPhone at the moment. Pain Coach by WebMD and Nanolume. The second only allows 10 free entries before it costs which isn't ideal but its minimal for something that could potentially help. Has anyone got any apps that they would recommend for keeping track? Please get in touch. In other news, its been a week since my second Prostap injection. I think the nurse lied to me. Just saying. A x

My pain has been almost unbearable today. The backache, the pelvic pain, the hip pain and of course the headache which hasn't left my head for a week now. Whilst I was driving to work this morning, sitting in the daily traffic in Colchester, I was clouded by nothing but negative thoughts. The constant encouragement to get yourself to work, the wondering how many hours you will last before needing to go home, the overwhelming urge to just turn around and drive home so you can curl up in a ball and sleep. It was a long 25 minute drive today. I've naturally experienced tiredness before but since being on these Prostap injections, I've found out the true meaning of fatigue. Chronic fatigue. The feeling of just being in a room but not taking anything in around you, whether it be sounds or movements. The feeling of your heavy body, not wanting to move, even to take a sip of your drink. And the worst of all, knowing you look exactly the way that you feel. Like poo. I've...

Determined to get back on the healthy train to make myself feel better. Tonights meal was a steamed haddock fillet, green beans, broccoli, roast sweet potato cubes, and a chilli and garlic dressing. Pretty tasty. Just need to get my sleep back on track next please! A x

So, its been 48 hours since I had my second Prostap injection. I've had a constant headache since but to be fair I was headachy before. Moods have been a bit edgy but I've been stressed over the last 48 hours too with other stuff. Tummy ache hasn't been ideal today but when is it these days?! I'm super tired but less so than in the first few hours of having the injection. I felt like I had been hit by a train. I'm still waiting for the miracle day when the second injection makes me feel wonderful but I'm still keeping my fingers crossed. Typically my doctors have said they won't be prescribing me anymore injections and so I have to go back to the hospital. Something about £75 an injection being too much. So right now I don't know when my next jab will be but hopefully they won't mess me around. Will keep you updated on my progress. A x

My body doesn't seem to let me sleep past 5am these days. But it does mean I have time to scan the forums and I've just come across this post. It's another great article on almighty.com about chronic illness and having "one of those days". Have a read, we can all definitely relate to this one... https://themighty.com/2017/01/advice-dealing-with-bad-days-being-sick/ A x

Well, todays the day. The day of my second Prostap injection. I'm nervous but excited too. Nervous that it might make my symptoms worse again. But excited that it might actually make me feel better. I've taken tomorrow off work just in case I don't feel well, but I'm hopeful that I can actually go out and enjoy my day instead. I need this to work. Because I'm not sure I can do another 4 weeks like the last. So please keep your fingers and toes crossed for me. I will update you all tomorrow. A x

This morning when my alarm went off at 5.50am, I didn't know if I was going to make it to my last PT session. My tummy was heavy, and the pain still blatantly apparent from the day before. I said to myself just get up and see how you feel. So I did. Once I did that, I said go to the gym and watch your bestie do the session from the sidelines. So I did. Once I got to the gym, I said to myself, just try some exercises, don't do it all. So I did. Then I kept saying just a few more exercises then stop. And I kept saying that until the full hour was up and I had completed my last session. I kept telling myself to carry on all day. I got to go see my good friend for breakfast and a catch up. I got to have afternoon cuddles with my gorgeous Pebbles (see picture below, relaxed much?!) and I got to go out for a lovely dinner with my bestie (see next picture). Today I pushed through and got to do what I wanted. Today I said screw you, Endo! And damn it felt good! A x

Hope you're all enjoying your Saturdays. Unfortunately for me, bloated Friday has carried on into Saturday and the pain has been quite intense today. From my last MRI, it was noted that I had a 4cm cyst on my left ovary. It explains why the pain is much worse on the left hand side, plus I know the endo is more infiltrated on that side too. Feels like someones standing on my abdomen, putting pressure on it and causing uncomfortable pain. Still trying to stay positive about the injection on Tuesday. T minus 3 days. Afternoon cuddles with Pebbles (my gorgeous cat), painkillers and a hot water bottle have been in order. However, although I'm struggling today I did complete two of my three weekend objectives which I mentioned in my last tweet yesterday ( @hooky2 ), House valued, check! Car washed, check! So my Saturday hasn't been a complete write off. Lets see what tomorrow brings but I'm hoping it will be a better day pain wise... A x