My Pain Today.

21 Nov

This is an impromptu post.

I’m in pain.

I’m trying to distract myself but it’s not working well.

My legs are heavy and sharp.
My back feels like I have a machete wedged inside.
I am so nauseous, my body aches all over, I’m lay down but feel abnormally dizzy as though someone, some bastard is pushing me from side to side, see-sawing me over barbed wire, pulling and tearing it across my abdomen.
My belly is carrying a sack of bricks inside a bag of numb cotton wool. I tried to stand earlier and felt like my insides were going to burst out of my body. I had to hold my belly, if I didn’t I feared my womb would push out of my belly button.
My hips are superglued to the mattress, the fucking pain in my shoulder is back. I am so sick and tired of all this.

I’m done with it all. I have had enough.

I don’t know where all you amazing women with Endometriosis get the strength but I can’t fucking carry on like this.

I had two months pain free.

Pain free.

It was bliss, heaven, more than I can wish for. I don’t want billions of pounds in the bank, sure it would be nice, but I just want to be PAIN-FREE. I’ve experienced it, it was the best time of my life. Like before I’d hit puberty. I felt free.

Now I feel robbed. I feel like a blind man that was given his sight back to only having it taken away from him in the next breath.

I have moved to an amazing new home but what good is it when I’m stuck in the bedroom unable to move, again.

Did I mention my fucking flower hurts? It hurts so bad. The fuck does that happen for?

I can’t stop crying, I need to find some fucking strength. But right now I’d rather be dead than go through all this bullshit again. I’m sick of it, I can’t get past this today.

I’m sorry for being weak.

I just think I’ve been strong long enough now and I haven’t got the energy anymore to deal with this.

Please someone just find a fucking cure, I beg you. Please, you have to stop this pain for everyone worldwide.

I’m sick and tired of being tortured by my own body.

I have no choice though, I have to stay strong..
I have a hospital appointment on Tuesday.

Tired.

It really has been far too long.. Period Talk.

14 Nov

Wow, it has been months since I last posted. It has been crazy hectic lately.. I haven’t even had that much time to Tweet let alone publish a blog post. I’ll give you a brief summary of what’s been happening just so I can get you all up to speed and then I can get to the meaty part of my post and vent my emotions.

Since recovering from my surgery, I felt amazing – like I had NEVER ever ever felt so good – okay, maybe before I began my periods, I felt that good! I was working out three times a week for an hour each time (not at the gym, just at home with some weights and a couple of workout shows I’d recorded off the TV), I was getting back in shape. I’d had my first ever PAIN – FREE PERIOD. Do you know how good that FELT? I called my Mum and my best friend to tell them I was on my period and that I was in no pain and I had lots of energy.. yeah sure, I had a few twinges of cramps but F**K ME! NOTHING AT ALL like what I was used to. I have NEVER had a pain – free period, I’m pretty sure the kind of period I had was a ‘normal’ period.. those cramps are NOTHING. Like I was jumping out of bed and all sorts. I was AMAZED.. I honestly felt like I had my life back, I had no other pains the rest of the month, I had lots of energy, I felt like ME.

Second period 31 days later.. Again, more of the same.. like I was just so amazed at how little pain I was getting! Both periods lasted my usual 7 days-8 days.

Third period.. I’d started back at work, again another virtually pain free period. I had noticed I was more exhausted than usual though – and I know it had nothing to do with being back at work as I did a staged return where I was only working a couple of days a week.

Fourth period..Oh hello mama. This hurt. The whole LEAD up to my period.. HURT. I think the day of my period or possibly the second day (I can not remember), I remember feeling as though I wanted to be sick, I had intense pain, exactly how it was before my very first surgery, I was in so much pain I was screaming yet no-one was at home so who the hell I was screaming for I don’t know. My boyfriend wasn’t due home for another twenty minutes. I remember I had been taking Tramadol, Paracetamol all day but I couldn’t eat anything because I was in too much pain (it MUST have been my second day of my period, argh can’t remember!), I crawl out of bed to make it to the toilet, the last thing I remember is sitting there and then I woke up in bed.

According to my boyfriend, he had come home from work and Teddy had jumped on him and ran upstairs to the bathroom, my boyfriend had found me on the floor and I was shaking and my eyes were all funny. He got me onto the bed and apparently I was speaking but not making sense. He rang my Mum (who’s a nurse) and she told him he needed to give me a sugary drink so that’s what he did. All I remember is being put on the phone to my Mum and her asking if I had eaten anything – I told her no and she said that’s why I had passed out. I was meant to be going on holiday the day after! I’ve never seen my boyfriend look so worried, it actually scared me!

Has anyone else ever passed out on their period? I used to do it a lot but not to the point where I would be physically shaking and slurring my words. Please, comment below if you have, I kind of feel alone on this at the moment!

Long story short, ever since that horrific period I have been in pain almost every day. I don’t understand what the hell is going on. I am so frustrated, I wish I could just SEE inside my body.

I managed to go on holiday (yuck, periods on holiday) and I know this sounds crazy but it’s like the hot weather made my bleeding minimal.. I’ve never had anything like it! I was in AGONY but my bleeding was minimal. But I was in pain for a solid 7 days. Luckily I managed to enjoy my holiday towards the end, but I was just so exhausted. It was a very relaxing holiday though.

Before I go on to tell you about my next period (my most recent) I better catch you all up to speed with what’s been going on in my life! Basically, I went back to work and then a few weeks later, I handed in my notice. We were moving! As you know, my boyfriend plays rugby, he decided he wanted to go back and play rugby union so he left the team he was playing for up north and signed for a team further south. It meant we had to leave Manchester and relocate – new jobs, new house..everything. Stressful right? Yeah.. the whole reason why I haven’t blogged. Things have been crazy busy. So we have moved almost three hours away and I’ve only just managed to secure myself a job I want. I have been offered three different jobs since I’ve been here but the money they were offering.. I wasn’t getting myself out of bed for that. I know it sounds ungrateful, but I’ve done the job I do for 5 years+ I deserved a lot more than what they could pay me. Anyway, I accepted a job yesterday and I can’t wait to start, I am so excited about it! We have also just managed to find the most perfect place to live! All in a days work hey…  it’s only taken a month.. grr! I wish it had all been sorted much sooner.. but better late than never. We move in this weekend so at least that is those stresses gone. I still have a money stress.. I acquired quite a bit of debt whilst I was off sick for so long.. SSP is awful, it really is. Seriously can’t wait to begin work and get my money back on track! I need to look into some kind of work insurance or something – if there is such a thing, so if I had to have that much time off again then I would be able to y’know.. live.

Onto my most recent period.. For the past few weeks we have been staying with my boyfriend’s parents. In the lead up to my period, I was in agony, my moods were all over the place. My ovaries were on fire, I could feel them swelling into big hot balls of fire. It was hell. Sheer hell. Back pain. Shoulder pain. Neck pain. Leg pain. Flower pain. Ovary pain. And then this twisting, ache as though a little man was inside my pelvic area and he’d decided to put a few pictures up on the surrounding walls. It felt like a dull thud. Disgusting.

My painkillers weren’t working. Oramorph wasn’t touching it. I was getting stressed because I was so far away from MY hospital and MY doctors. I ended up at the emergency doctors as a temporary resident – I refuse to register at a doctors down here.. it took me over 12 years to finally get my GP right, I wasn’t changing that for the world. The female doctor that I saw was HOPELESS.

‘Oh, I get pain when I’m ovulating too, I know what it’s like’

Have you got Endometriosis too?

‘No’

Oh well, just to give you a brief history, I was diagnosed with Stage Four Endo, I had a 15cm by 12cm complex Endometrioma removed from my left ovary plus extensive excision. Then went on to have a further surgery to remove from my bowel and bladder and then to remove the Endo that had spread all over my right side due to Prostap pissing it off.

‘What’s Prostap’

A chemically induced menopause.

‘Oh well I don’t think it will have grown back, Endometriosis stays away once it has been removed. I think the Oramorph you have been taking is too strong and you should try just Paracetamol and Ibuprofen’

Thanks, bye.

So this proves my point as to why I won’t register at another doctors anywhere. I don’t trust them. Oh shit, did I mention she gave me a pregnancy test? Lady.. it would be a damn fucking miracle if that had happened. I also couldn’t be bothered to set her straight – it was 10pm and I just wanted to go home at this point. I just wanted my Mum! Don’t get me wrong, my boyfriend was there the entire time, he’s my absolute strength!

I got on with my week of hell.

Which pretty much brings us up to the current day.. I started getting pains again yesterday, I’ve been getting them on and off since my last period. I can’t lie on my right hand side. My ovaries are swollen – well, it bloody feels like it I look pregnant but I’m not. My Mum made me call my consultant at the hospital a few weeks ago, and I have an appointment on the 26th to see him. I just got to hold out until then. I can do this. Done it for long enough in the past.

I am apprehensive though.. What if I just get dismissed? My consultant is not the kind of doctor who would do that but there’s always that voice in the back of my head that says ‘What if?’, just because of all my previous experiences. Then.. what if it isn’t back and this is just my normal? I’ve spoken to the other girls who had their surgery around same time as me.. and they’re in the same position.. they’re in pain again. I guess, only time will tell.

Oh, I’m due on next week too… might throw a period party. It’s that fun, right?

Sorry for the rant, it’s not actually THAT long really. I have summarised this a hell of a lot. I won’t bore  you anymore. I was expecting it to be more.. but I have cut a lot of stuff out that I was going to rant about.. but I’ll do that some other time.

Apprehensive about my appointment…

Recovery, Recovery, Recovery and a Hospital Appointment

27 Jul

Pain, pain go away.. just don’t come back another day.

I didn’t realise recovering from a major surgery would actually be that difficult. Naive? Could say that I guess. I mean, sure I had my first laparoscopy in Sept/Oct (why can I STILL not remember the actual month?), but I went onto Prostap pretty much straight away and I was bound to be in pain anyway as Endo had been left behind on my bowel and bladder. So at the time I didn’t even think anything of it and it was also Christmas time in my retail job so I had no choice but to just crack on with it. Sick days in December? Only if you’re dying. And I mean dying.. like your arm hanging off isn’t a good enough reason. This time around, I’m active endo free. Which is why I can’t understand why I’m still in pain.

Yes, it’s a different pain. It’s like dull aches on my right side and a cramping sensation in the middle of my belly. This pain is nothing but it does remind me of the pain I had as a teenager. It still hurts. I’m sick of hearing, ‘Oh well, you have no Endometriosis left, it was all cut away.’ Are these people seriously that thick? Yes, there is no Endo there but than five weeks ago I was having a massive operation, Prostap is still leaving my body, I’ve bled three times for 7 days since surgery. Now f**k off. I’m still exhausted. I don’t need your crap medical knowledge because guess what? You have none. They irritate the hell out of me.

This Tuesday just gone, I visited the hospital for what I was hoping would be the last time for a long while. I had my post-op appointment with Mr George. He reassured me about the pains I am getting and explained that everything is just settling down. I asked him about exercise and he told me that yes, I can go ahead and exercise but not to do anything silly. He told me there is a 30% chance of it coming back.. I forgot to ask him if they were HIS personal statistics from his own patients or whether that was a general thing. I’m not sure. I’m hoping I’m in the 70%. I can’t cope with Stage Four again. Not unless I have no pain with it of course.

He told me that I wouldn’t be being discharged from the hospital and I will be closely monitored for the next 24 months, with regular check ups. I also have to fill in the Endometriosis survey regularly so they can keep an eye on my health and if anything is awry I will be called in for scans etc. Which is incredibly reassuring.

Mr George then went on to say, if I wasn’t planning on any babies soon then I must consider a form of contraception but he didn’t push this as he knows I just don’t react well to any hormones. So sick of them. I am also not going through a trial and error of bloody contraceptive pills to find out they’re all crap and give me spots. No thank you. That’s just my decision though. Rather just use a condom than mess with my head anymore that it needs messing with!

I do want to try something for mood swings though – something herbal. Any recommendations will be highly appreciated!

As I was concerned about the amount of times I had bled since surgery, Mr George explained that because of the Prostap and coming off that and then having this major surgery, it was incredibly normal for this to happen. So right now, I’m just keeping track of every bleed and hoping my body settles down into a pattern. I’m praying that 2 periods a month doesn’t happen like it did before I first went on the contraceptive pill. I can’t afford to be bleeding for that amount of time. Endo dolls should be given a discount on sanitary goods, I swear!

I’m very exhausted today but I figured I needed to put a blog post up, as I’m still drafting my other post. The post I’m drafting is aimed at GP’s so you can imagine it’s pretty feisty and I’m trying to tone it down. Please, please leave a comment if you have any questions as I know this post wasn’t as detailed as I usually am.. and also if you have any ideas for controlling mood swings? Mine are RIDICULOUS.

Back to work next week…

I have a Facebook Fan Page!

10 Jul

Hi everyone!

I know this is a shameless post, and I did tag it on to my last update but I thought I’d just write something extra about it here! I created it the other day for the following reasons:

  • I want to see who is actually reading my blog!
  • I want to get feedback from you all – the good, the bad and the ugly!
  • Blog post ideas – anything you want me to discuss that I’m just NOT doing!
  • I also want you to share the love with the page and pass it around – shameless I know, but I want to raise awareness for Endometriosis, and one way I can do this currently is via my blog. Yes, I know not everyone is going to read it – but some people out there might go, ‘Endometriosis? What the hell is that?’ and then feel the need to click, take a read and perhnaps learn a little something.
  • Perhaps you yourself have Endometriosis and don’t have a blog for whatever reason – you may find by sharing my story that someone who was pretty ignorant about your condition becomes enlightened and begins to understand more.
  • I also want you to know – I do NOT make money from my blog (I wish I did.. I wouldn’t have to work full time), it is for the sheer purposes of trying to raise awareness and also an outlet for myself when times get really difficult.
  • Also, I will be able to answer comments pretty much straight away – I’m not always able to reply instantly on my blog despite having the app on my phone – I’m lazy.. whereas I do find it easier to respond via Facebook.
  • You will be able to find out the latest updates – especially if you’re not following me on here for whatever reason!

So that’s it.. my absolutely shameless blog post promoting my ‘Fan Page’.. I’m sorry, it had to be done!

I want to thank each and everyone of you for reading my blog. When I met that lady in the hospital who had been reading my blog the night before surgery (she didn’t have Endometriosis, it was for something else).. well it really did blow me away – the fact she said I had helped her feel better knowing she wasn’t the only one who was scared. I want to help more and more women. I love that you all take time out of your lives to read my blog, it makes me feel so proud – for being able to create something good out of something so sh*t.

Thank you. Here is the link – go click, like, share whatever! www.facebook.com/LifeOfAnEndoDoll

This Endo Doll is NOT giving up! My blog is just the start of it..

My Second Surgery…Part Two.

8 Jul

I remember hearing someone screaming in pain, everything just a hazy blur. I tried to open my eyes and they’re sort of half open, I couldn’t quite open them fully, I felt so weak and tired. As I was opening them I realised the person moaning in pain, was me.. hmm that wasn’t good! I tried to look around me and I vaguely recollect people being around all sides of the bed.

I realised I was in the recovery room.

I don’t really remember too well who was actually there around the bed but I do remember seeing Mrs Wilson and she was asking me what type of pain I was in and where the pain was; another person in dark green scrubs was telling me everything would be okay and they were just trying to stabilise my pain. My only memories next are of saying I really need a wee, then Mr George popping up at the end of the bed telling me everything would be just fine and I’m doing great (although I was so out of it, it could have been someone else!), I remember him saying to a blonde lady in dark green scrubs how much fluid did she put in and something about a litre and a half in response – again, this could CLEARLY be all in my own head and to this day I still have no idea what the fluid was about.. maybe the IV drip? I’m not sure! Then Mr George disappeared and reappeared and said he was just going to pop a catheter in.. well, at this point I remember crying and saying that I’d never had one before and will it hurt, I’m scared. I then clamped my legs shut and wouldn’t let him in! I remember someone saying to me that I had to relax (in a nice way!) and that it wouldn’t hurt, not compared to the pain I was having right now. Someone then helped me to put my legs to one side and I remember feeling so terrified – I absolutely HATE hands down in that area, even after all the prodding and poking I’ve had over the past year, I still can not stand it. Personal reasons – I’m always 100% honest with this blog, but some things I just absolutely do NOT need to talk about. I just have a major fear. So it was a struggle for me to put my legs down, I also remember it hurting and all I wanted to do was keep my legs shut. I just remember Mr George smiling at me as I turned my head and asked how long the surgery had taken.. 3 hours. Shorter than last time. Then that’s it.. I felt pain relief within a minute or so and I must have gone out for the count as I don’t remember anything else.

I MUST have been chattering away at some point as a nurse the next day told me I had been asking when I could put my makeup back on. Typical! Last time I was asking for a Nando’s.. this time makeup! I don’t remember being transferred to my bed on the ward but what I DO remember is seeing my Mum come walking through the ward doors and round to my side of the bed, as my Mum came to give me a hug, my boyfriend was busy putting balloons on my bed. I looked at him and he looked sort of sad.. no, worried? Then I realised, I had an oxygen mask on my face.. that could have been the reason why! I was so happy to see my boyfriend, I literally thought my heart was going to burst out of my chest, seeing my Mum at the same time instantly made me feel not scared and so secure, just knowing that she was there! They both looked so worried and were asking me how I was. I don’t really remember saying much just that I was okay.

Mum asked me if I had drank a peppermint tea yet reminding me that I did not want to be in the pain I was in last time from the trapped gas! I said no, I had just woken up. So she went to ask a nurse for some hot water, a nurse then came to see me saying I couldn’t have anything to eat or drink yet and I said why not? She said it was because I would be sick. I told her I wouldn’t, I’m starving and could quite happily sit here and eat a full on Sunday dinner and be perfectly fine. She didn’t look like she believed me, but came back with a small capsule of their peppermint drink. Freaking kidding me? I drank it. Then one of my favourite nurses came into the ward and Mum called her over and I asked, please can I have one of my peppermint tea’s, I don’t want pain from the gas, it’s awful! I ended up getting my own way! I had two of them I think? And no, I wasn’t sick. I’m one of the lucky ones.. Anaesthetic doesn’t make me feel nauseous like some people can feel.

My boyfriend had placed all these balloons over my bed, explaining he’d tried to get me an Ariel The Little Mermaid balloon but there was no helium at the Trafford Centre! That huge shop and no bloody helium! For those that don’t know, Trafford Centre is a HUGE mall.. like, you seriously don’t need to go to a gym if you shop there.. So you’d expect it to have some helium in stock! He then went on to tell me that there was no Ariel dolls in the Disney store! He looked so upset about it! He’d got me a box of Lucky Charms, which is my all time favourite cereal and in the UK it’s INCREDIBLY expensive.. especially for a box of cereal. He’d also got me a box of Hello Panda which is so yummy! He then showered me in hugs and kisses which was the best thing in the world ever. I remember my Step-Mum coming to see me with my Dad, and she had got me a Belle Disney Princess balloon.

20130708-182054.jpg

20130708-182100.jpg

20130708-182105.jpg

20130708-182112.jpg

Just a few images of my goodies! Here’s me with Ariel the Little Mermaid and my precious Mali Bu Bu who came for the adventure last time. Also, a snapshot of me and my amazing boyfriend, I really am the luckiest girl in the world despite the hateful Endometriosis.

20130708-182123.jpg

20130708-182149.jpg

This next photo is just really to show the types of incisions you may have with a laparoscopy. I have one in my belly button, one either side of my hip bones and one inbetween my belly button and my left hip bone. He went in on the same incisions as last time apart from my lower right hip bone incision – this one he had to cut lower down. I also had two miniature dots next to lower right incision where during surgery, once had had unstuck my right ovary, he suspended it in mid air – a bit like a dreamcatcher at a doorway, whilst he worked on excising (cutting away) my endometriosis which was all over the right side.

20130708-182143.jpg

Mr George came around later that evening – I’m sure my Mum and boyfriend were still there.. although I can’t quite remember. I’m not too sure what Mr George exactly said – all I recollect is him telling me I was Endometriosis free now, everything he could see, was gone and he was asking if I was okay and that he would speak to me properly in the morning, that I was to get some rest!

Soon enough visiting time was over (it’s only an hour in the evening..I’m sure though that my Mum and boyfriend were there earlier!) and I absolutely hated saying bye to my boyfriend, he couldn’t come and see me on the Friday evening because there was a rugby game. I was SO upset about this, then I reminded myself.. it could be worse, my boyfriend could be in the army and he may not even have made it for my surgery. As it happens he’s a rugby player and I was lucky enough to have him there when I woke up. I said my goodbyes and I drifted off to sleep.. after having a peppermint tea of course!  I think during the night I had some oramorph, but I seriously can’t remember.. it was a god send having that catheter though, really made a difference compared to my last surgery. I’ve just got through some more paragraphs and totally just remembered that I FaceTimed my boyfriend! I put my headphones in and was speaking to him for ages.. we did this every night I was in hospital and after his training sessions! THIS is what sent me off to sleep, knowing he was there for me!

In the morning, they brought round breakfast and yet again, tried making me have a bread roll.. OH MY LIFE. How many times do I have to tell these people that I absolutely do NOT eat bread? Unless its wheat and gluten free.. it causes me pain! I may well be active Endo free now but damn, I wasn’t about to risk it! So I ate my Lucky Charms. Thank god for my boyfriend hey!

After breakfast, a nurse came around and removed my catheter – oh my life.. breathe girls! It kind of stung when it came out, but apart from that it was fine. Just felt a bit funny for a few seconds. I was given this to read:

20130708-182159.jpg

I don’t know whether you can see that on there? It was basically some information about the catheter, what to do once it had been removed etc. I then got out of bed – slowly – and gathered my things so I could wash my face, brush my teeth and start my makeup! Once I’d made it back to bed – surprisingly easily actually. It actually occurred to me why.. I had begun to get in pain and then it disappeared whilst I was in the bathroom washing my face. I looked on my chest and realised I had a patch stuck to it just below my collar bone on the right side. I asked the nurse what it was and she told me it was Fentanyl and it was the equivalent of 125mg morphine or something like that.. being released into my body. The tab blocks had worn off and the Fentanyl had kicked in. So THAT explains why I felt pretty great. I genuinely felt like I could get up, and go to work. Let’s just say.. thank god I didn’t!

20130708-182221.jpg

20130708-182252.jpg

Me after I’d got my makeup on and got ready for the day.. The day of sitting there doing absolutely sweet F.A and reading books on my iPhone. I always sit in the hospital bed doing my makeup.. sometimes I have to lie back for a rest because I’m tired. Some of the student nurses came around to have a look at what I was doing, and this was the point one of the nurses told me I was asking about whether I could put my makeup back on when I’d come round from my surgery! Look at that swollen belly! YUCKY! It was rock solid for a few days too!

I did see Mr George that day.. and all I can tell you about the surgery is that all my organs were unstuck and all active Endometriosis was removed and I was told a 30% chance of it coming back within so many years. Mr George explained to me that my Endometriosis although it spread during Prostap – luckily it was a steady growth and not Endometriosis that grows at a super fast pace, I am very lucky. I have an appointment with Mr George on the 30th of this month, so I’m going to be taking a notebook to write down everything he did so I can tell you guys!

My brother came to see me too, he got me the cutest get well card! I have a HUGE selection of Get Well cards from family and friends, which I still have up on my windowsill! My Mum came to see me every visit and my Dad and Step-Mum came in the evenings.

I stayed in hospital until the Saturday, when I finally got to go home. I was staying with my Mum until I was back on my feet again. I couldn’t wait to eat loads of food.. I had a curry that night.. oh wow, heaven on a plate! It was so good to eat again, after doing the nil by mouth and before that, the awful Low Residue Diet! Here are a couple of shots of my incisions up close.. sorry for anyone that’s squeamish but my blog is all about honesty.. so here’s some photos!

20130708-182350.jpg

20130708-182434.jpg

20130708-182452.jpg

20130708-182442.jpg

Some of these photos are taken a few days apart so you can see them as they heal. I was glued – no stitches at all this time. Last time I was mainly glue and one stitch. My glue also came off a lot faster this time – I still have a little left 18 days later. You can see on some of them where it’s red.. that’s me itching.. I ended up having to do this on my belly as I was itching and it bled a little..

20130708-182506.jpg

My boyfriend brought some home from rugby which were brilliant and stuck on but didn’t hurt when you peeled them off, but they were super soft. I don’t have a photo of those ones though unfortunately.

Here’s a photo of me when I finally made it out of bed on the Sunday.. I did a video on Instagram of my belly, absolutely high on the Fentanyl patch haha. What an idiot. I spent the next few days after surgery walking around like the hunchback of Notre Dame.. my Mum and boyfriend kept reminding me to stand up straight! I was scared though!
20130708-182405.jpg

That’s basically how my surgery went! I must also point out.. I began to bleed the day after surgery and I had also had my first period since Prostap on the 6th June. I will talk more about this in a future post though. I’m going to leave it there as I’m over 2000 words and I aimed for a 1000 for this post! I seriously don’t want to bore anyone, I want to keep your attention! I hope all my EndoDolls are pain free and if you’re not, I really hope you get some relief soon.. As I type this I’m pretty high on Oramorph. I keep feeling like I’ve missed things out.. ah well, if I remember it, it can go in the book I’m writing. Eek.. whilst I’m here.. would you mind liking my Fan Page for the blog on Facebook? Shameless plug I know, I do apologise.. It would be great to get feedback from you all!

https://www.facebook.com/pages/My-Endometriosis-Rollercoaster/190455317786177

Positive vibes help aid a speedy recovery.. And rest. Lots of it.

My Second Surgery.. Part One!

6 Jul

I think last time I posted, I was talking about how scared I was. Well.. I did it! I got through it. Again, thank you so much to everyone who wished me luck and was thinking of me as it really helped me! I’ve pretty much decided this post will be a sort of walk through of the day.. and bits and pieces I remember; please don’t expect much as it’s all quite vague! Also, side note – in the UK they are called an Anaesthetist in the US they are called an Anesthesiologist, so please, no comments correcting me on that one!

Oh before I continue.. Here’s a quick pic of the drink I had to drink for bowel prep.. Yuck! But NOWHERE near as bad as the Sigmoidoscopy prep which I didn’t complete properly!

20130630-221040.jpg

And one of me looking pretty pleased with myself after having a mini breakdown before I drank it and telling my Mum she had to say words of encouragement! Which she did! She’s funny, I love her! Oops almost forgot to mention I had to drink two lots of this drink, the second one I drank later on. There had to be a 4-6 hour gap in between the drinks.

20130630-221622.jpg

I even got it down my vest top… Attractive! I was drinking it SO fast!

On to the good stuff..

The night before my surgery, I was heavily freaking out and couldn’t sleep properly and I had to keep reminding myself how incredibly skilled my surgeon is and also my other surgeon who was to be operating on the day. Mum said to me, imagine how you would feel if you were at the other hospital (it’s basically condemned.. you go in and don’t come out), and then she said oh, actually you wouldn’t even be treated there, I would have you moved. So she made me laugh about that. I think I was tweeting a lot the evening before and obsessing a lot with Candy Crush and getting mad because I’m stuck on level 135 – it’s so frustrating!

I felt a lot calmer after I’d been on FaceTime to my boyfriend and our puppy, it was hard being away from them but it was so great being at my Mum’s.. I really hope everyone has an amazing support network like I have. If you haven’t.. EMAIL ME! No-one should have to go through this drama without someone being there for them whether it’s by their side or just knowing someone is thinking of you and hoping you’re ok.

I wake up in the morning at around 7? Which was quite early and I tried to go back to sleep for a bit and then at 8 I got up and ran myself a bath as I’d decided the evening before with the help of the Endo Dolls on twitter that it would help relax me in the morning. Oh boy, am I so glad I took their advice! I’d been stressing out so much it had caused the world’s biggest pain flare – I’d seriously felt nothing like it. The moment my back touched that warm, heavenly soothing water, I just felt every inch of my body relax. As a lot of you should be aware by now, I use makeup application as pain relief these days so the fact I’d chosen to wash and curl my hair on the day really helped me seen as though you are not allowed to wear makeup on the day of surgery! I got out of the bath, wrapped a towel on my head, sat down in front of the mirror, towel dried my hair and wrapped it back up in the towel on top of my head. I then applied my AMAZING Kiehl’s Ultra Facial Cream moisturiser – this stuff is incredible. It’s pure 24 hour hydration. I thought, I need this.. I need to look good when I wake up! Thank god I did, my skin felt so soft and had a healthy glow to it! I then began to dry and curl my hair. After I did this, I had to break the rules slightly and put my eyebrow make up on.. There was no way I was leaving the house without those bad boys sketched on! As soon as I had done this, I felt much better. There was even time for me to take a snapshot..

20130703-161244.jpg

Then I remembered that I still hadn’t finished packing my bag for hospital yet. Always last minute! It’s the best way. I thought I would just give a quick breakdown of the amount of stuff I take with me that I don’t even need or use.. There’s also a couple of photo’s. There is honestly no need for all this stuff.. well, I needed it. I treat the hospital as a holiday, it’s the only way I get through it without going insane.

20130703-161323.jpg

20130703-161333.jpg

20130703-161340.jpg

As you can see I had my special Endo bag to take with me, it says on it ‘I fight like a girl’.. Hell yeah, I do! That’s the bag my boyfriend bought for me, if anyone remembers that from a previous blog post! Packed inside I had:

The post surgery purple pants that my boyfriend bought me which I wore to my sigmoidoscopy

A variety of different vest tops – all white.. I just have a thing about white tees in hospital!

Pyjama bottoms – two pairs of polka dot ones – love a bit of polka dot

Some shorts (they look hot with the hospital stockings haha – you have to stay looking good right?)

Fresh underwear – I took way more than what I needed but hey, I wasn’t sure how long I would be staying!

My amazing customised Barbie hairbrush

Make Up – Foundation, Brows, Gel eyeliner, Selection of eyeshadows, 6 Different lipsticks, Mascara, Face powder, Bronzer, Blusher, Concealer

Make Up brushes – freshly cleaned

Kiehl’s Lip Balm

Socks – couple of pairs of normal, never matching and a pair of fluffy socks for comfort

Sanitary Towels – Always pack these.. hospital one’s are awful

Some mini packs of cereal

Peppermint Teabags

Magazines

Books pre-downloaded onto iPhone

Dressing Gown – my fave Ted Baker one which is a thin one, I always get too hot in hospital, and it was purely for going down to surgery in

Hair bobble and a few hair grips

Toothbrush, mouthwash

Baby wipes

Kiehl’s Ultra Facial Oil-Free Cleanser, Blue Herbal Gel Spot Treatment (just incase I got a breakout) and Kiehl’s Ultra Facial Cream

My Clarisonic – oh wow.. can’t live without

Phone charger

Photo album of my boyfriend, me and our bear

Ariel the Little Mermaid Doll

and my beloved MaliBuBu monkey which was the first cute bear my boyfriend ever bought me

So yes.. that’s my Surgery bag list.. probably way over the top but.. it makes me feel more secure! I’d feel like I’d forgotten something if I didn’t overpack.  Like I said.. I treat my little hospital vists as a mini holiday haha!

20130703-161348.jpg

Outfit choice for the hospital.. in your face, leopard print leggings to distract from my face with no makeup on, cute little flats embellished with jewels and a loose white tee. You can just about see my curled hair on that snapshot!

So that was it.. I was ready.. I took my bags to the car and got in the passenger side. Instantly lit a cigarette – I needed to, I was starting to freak out – all that was going through my head was the thought of a colostomy bag, I kept trying to be positive but it was pretty damn hard. Again, thank you to everyone who sent me positive, supportive messages; they helped a lot. We got stuck behind a number of slow ass drivers but I was secretly grateful because it was delaying the fact I had surgery. I had to be at the hospital for 11, but I’m a Virgo and so is my Mum so we were early, which I would much rather be so I can get mentally prepared and not feel flustered. We got there and the world’s tiniest car park was filling up fast, but luckily there was a slot as soon as we got in and Mum parked the car pretty niftily, she then went to get a car park ticket whilst I lit up yet another cigarette and had a little cry in the car. Mum came back and sat there whilst I finished it and was joking with me asking where my sunglasses were – I knew I’d forgotten something! Joking. Could have done with them though, felt bloody shocking without my makeup and didn’t want to bump into anyone I knew!

So we leave the car and begin to head inside and then I just froze and burst into tears and told Mum that I can’t do it and I need to go home now, I’ll learn to live with the pain, it’s okay. She gave me a hug and told me it will all be over soon and started walking me across the road towards the hospital. Passed a few pregnant women on the way in and all I could think of was,’Oh FUCK OFF’, when usually I wouldn’t think like that! They could be pregnant with IVF babies or had an incredibly long struggle – who am I to be nasty? But I was just scared, and I take back what went through my mind. But then they could just as easily have 18 children at home and drink cider all day. Yeah.. I did carry on being nasty in my head. I do think hospitals should consider moving the units. Just going to have an operation on my mashed up reproductive organs and walk past every fertile woman known to mankind, cheers for that.

We get to the lift and I think I’d started talking absolute crap, like the time I used to be majorly scared of needles (so used to them now) and I had to have an injection at school and I was talking about the time I went to the zoo just to distract myself. Like I talk absolute bullsh*t when I’m scared. I have no idea what I was going on about to my Mum though. We get up to the 5th floor (ironically, the floor I was born on – well, I was born in theatre – ha Drama queen 😉 but 5th floor was the floor babies were on!), where Jasmine Suite is based and all my favourite nurses work! Ah see, I’m talking rubbish again just because I can remember how scared I was! As we get out of the lift and start walking down the corridor, I’m walking incredibly slowly, like I genuinely believe a tortoise would have overtaken me the speed I was going at! I told Mum I would feel a lot calmer if I knew my favourite nurse was working – turns out she was! Talk about that calming me down! We get to the ward reception bay and my bed wasn’t quite ready but I didn’t care, I was way early – think it was like half 10. We went and sat in the day room until it was ready.. and then after reading a few magazines and having a chat, a pretty lady walked in with who I assumed to be her partner. She looked as scared as me! After a few minutes, I think I asked her if she was here for surgery too? She said that yes, she was and I told her I was really scared, she agreed telling me she was too! Then she turns and asks me if I’m the woman with the blog? I said that I have a blog, yes! She said oh you are, I was reading your blog last night!

Can we just take a moment here dolls.. This made me SO happy! The lady wasn’t having treatment for Endometriosis, she was having something else done (I won’t say what, people’s privacy etc) but to know that my blog had reached someone! She said it made her feel a bit better knowing she wasn’t the only one who was scared, I wanted to tell her it made me feel a bit better knowing she had read my blog, that my blog is actually doing some good! I did see her briefly after the surgery – and I’m sure I asked her her name but jeez I was so petrified that day, her name has totally escaped me (not that I would print it here without her permission anyway!) but it would be really nice if I could remember it! Anyway, she was a really lovely woman and looked amazing even though she was about to have terrifying surgery!

I then hear my name being called to tell me my bed is ready, so Mum comes with me (she did NOT care if she was about to get thrown out, she could see how scared I was – I was totally more scared than my first surgery purely because of the risk of a colostomy bag). She pulls the curtain around my bed and I got changed into the beautiful hospital gowns (yuck!) that they make you wear, last time I had a pink one and this time a blue one.. bit gutted but Mum pointed out it matched my hospital gown, so that made me feel happier! I then started getting worried that Mum was going to be told to go, so I said let’s go back in the dayroom for a bit!

20130703-161353.jpg

20130703-161400.jpg

Here’s a few snapshots of my dressing gown and hospital gown – attractive. BLAH! I began to get quite tired and in pain as I was stressing out, so we went back to my allocated bed within a few minutes Mr George turned up and spoke to me about everything and made sure I was okay, made me laugh a few times too. He’s brilliant!

I can’t remember too much about the order of events for the next bit but I remember just talking with my Mum until I had to have my bloods taken, this was where I had to say bye to my Mum and I got really upset and didn’t want her to go!

20130703-161406.jpg

Here’s a snapshot of my view after my bloods were taken, as you can see Mali Bu Bu and Ariel are keeping me company! Shortly after this, the Anaesthetist who would be working alongside my main Anaesthetist (Mrs. Wilson) came to see me and asked me a ton of questions and made sure I was okay – she was brilliant, really went through everything with me and just had a general chat too! Then Dr. Wilson came to see me and, oh she was just fantastic! Such a cheeky little face and bubbly smile, she really put me at ease. I knew it would be Dr. Wilson as my Dad had told me it would be because he knows a few of the doctors at the hospital and he’d found out!

I vaguely remember being called down to surgery at around half 12 and I was taken down by one of the student nurses, she was really lovely and kept talking to me to keep me calm. When I got down there it was a bit different to the last time I had surgery, perhaps because it was an afternoon surgery? This time I was seated at a little table whilst I had to answer a ton of the same questions I’d been asked upstairs, I don’t mind this obviously, it’s great to know they do the correct checks! They then left me to it whilst I waited to be called through. Then ANOTHER Anaesthetist came to check my details and introduced herself! I was then taken through and I almost started crying again, just as we walked around the corner at the swinging doors into the ‘Going To Sleep room’ – sorry guys, I just have no idea what to call it – Mr Geprge and Mr Rai were outside the door speaking with Mrs Wilson. I instantly didn’t want to cry in front of my surgeons, I didn’t want them to think I was a baby haha, how RIDICULOUS right! They said hello and I was in a kind of daydream so I kind of smiled and just carried on walking, my heart was absolutely racing and I was trying to slow my breathing down.

When I got through the doors, it was a room larger than the one I’d been in last time (I must have been in a larger Operating Theatre or something as it was a dual surgery), I was told by a really nice man to get on the bed and get comfy. In the room there was – hang on, let me just count this out… Five Anaesthetist ‘s in the room, all having a good chat with me and making me laugh. As I lay down on the bed, one of them moved my hair back and said some nice words (I can’t quite remember what) as I was crying because I was scared, not like heaving crying, more tears just rolling down my face! Another got me a tissue and said everything was going to be just great. I was in there about 10 minutes just lying down having a chat and things, whilst they put one of those horribly large cannula’s into my left hand and then as they were placing that into my hand, a friendly face popped up over the side! It was my Dad’s customer (he’s a gentleman’s hairdresser) who also happened to be an Anaesthetist – he was dressed in a suit and he said, ‘My haircut’s bloody terrible’, which made me laugh and he said he’d just come to check I was okay! I was like I am now! I meant because I’d seen him, it was nice seeing someone I knew!

So then everyone started talking to me at once about how we knew each other and then Mrs / Dr Wilson (Head Anaesthetist, I’m guessing. I have NO idea what the correct term is, I am not medically educated!) walked in with her chirpy voice saying, ‘I’ve been told we have a VIP here and we are to take EXTRA special care of you’, I started laughing and didn’t really say anything as at this point I was breathing this stuff in slowly through one of those oxygen masks (It probably was oxygen with the stuff they put in to keep you asleep and drowsy) and she was putting something into my cannula. She said Dr Adamson has been along and told us all we are to take extra care of you. Now, I have no idea who Dr Adamson is but from what I’ve gathered since he’s pretty high up at the hospital and my Dad also cuts HIS hair! So by this point I am so high on the meds I really am starting to drift off which is great because a part of me did think, oh shit what if I’m still awake and yet I can’t tell them I’m awake! After this, I honestly don’t remember anything else until I woke up.. but as we are at 3172 words already.. I’m going to leave it there.. I don’t want you all getting bored!

For those that don’t speak to me on Twitter or Facebook, you will have to wait and see what the outcome is! I will post the second part in a few days, I promise! But I’ve been having a few setbacks lately which is why this blog post has been delayed ever so much.

Drifting off to a thoughtless sleep.. No dreams..

Thank you.

19 Jun

Thank you.

Thank you for every single supportive message I have ever been sent, told, received in a card – you name it.

Thank you.

Thank you to my real friends and family. Your kind words have kept me going.

Thank you to my work colleagues who have sent lovely messages – I really appreciate them. I really do.

Thank you to my endo dolls online on Twitter – you make me feel normal. For that, I can’t thank you enough.

Thank you.

Thank you to my Mum. My strength. My everything.

Thank you to my best sister from another mister in the world, my best friend. You have and always will be there for me. And me for you. My soul.

Thank you to my best blonde bombshell, my best friend. My courage.

Thank you to my Dad. My funny man. My humour.

Thank you to my Step-Mum. My advice queen.

Thank you to my Brother. For fixing up your life and making me less stressed. We are so close.

Thank you to my Boyfriend. My world. My universe. My fucking everything. No-one can touch what we have.

Thank you to everyone I haven’t mentioned – it’s just because I’m sleepy. I’m exhausted. Wanted to keep this simple.

Short and sweet, emotional wreck, surgery tomorrow.

Re-blogged from an Endo Doll’s blogspot!

19 Jun

As I’m not sure HOW to reblog from a different type of blog.. I thought I’d go ahead and post the link here to an EndoDoll’s blog. As a few of you have been asking what a Low – Residue diet is.. Well, here’s a great blog post 🙂

 

http://rebecca-vs-endometriosis.blogspot.co.uk/2013/06/pre-op-diet.html

 

Follow her story too whilst you’re at it!

 

EndoDolls raising awareness..

Discussion Day!

19 Jun

So yesterday was FINALLY the day I got to speak to my amazing surgeon about the surgery that I will be having this Thursday. As most of my Twitter Endo Dolls know, I have been majorly stressing about this as I’m the type of girl that wants to know everything – like every minute little detail! Some people aren’t like that, the less they know the better. But I am a control freak and need to know absolutely everything I possibly can!

It was so good to see him, he makes you feel so calm, secure and safe! He’s always so smiley aswell! I wish all Endo Dolls could be treated by him as he’s incredible.

The long and short of it – basically they won’t know until they get in there and see everything EXACTLY what has to be done. But we have a rough idea. I will be having the Endometriosis on my bowel shaved off – if it weakens the bowel wall then I will be having a ton of stitches there. Although I am lucky that the Endo hasn’t gone right through the wall it has caused a big indentation – this is the bit that won’t become clear until during surgery. My water pipe will be released as it’s stuck, my left ovary also appears to be stuck so again that will be released. Hopefully all the Endometriosis will be gone on the left from the previous lap. And then he will be excising Endometriosis from the right side. I have been having a ton of pain on the right which I have never really experienced before – so we shall find out tomorrow what the lowdown is there.

I don’t really want to talk too much about what is going on – as it makes it all real somehow, you know! All I can tell you is 1/100 chance of a cholostomy bag.. usually it’s a 1/400 chance. But a lot of Endo Dolls have reassured me about this. So I can only hope and pray for a great outcome.

He has also asked me if I would be interested in coming to speak at one of the big meetings/classes they have with all the GP’s from the Manchester and Greater Manchester area – HUGE AREA! These happen twice a year (from what I remember.. yesterday was a bit of a blur) About my experience with Endometriosis from a patient’s point of view! So I’m VERY excited about this. I was telling him all about the forum I’m creating and things I’m going to be doing to raise awareness. He looked pretty excited about it – I said I’d get him a T-shirt, he just started laughing haha! He’s brilliant!

 

So currently, I’m staying with my Mum at her house – I came straight from hospital yesterday as the prep you have to have always causes me pain.. but so far I’m doing ok. The drink was nowhere near as bad as what you have to have for a sigmoidoscopy – as it’s only a little glass so I can handle it.. although before I drank it, I did have a mini breakdown. Surgery preps are alright to be honest. I’m just trying to remember to drink lots of water!  I drank it at 11.. it’s now half 2 and so far.. NADA. Ah well.. I’m sure it will happen soon!

I’m missing my beautiful puppy, Teddy and my amazing boyfriend so much. My boyfriend rang me this morning and told me Teddy didn’t sleep well last night (he normally sleeps right through) and he was crying this morning. Just FaceTimed my best friend who is looking after Teds today and he was crying in the background – made me sad! She’s currently on FaceTime to me right now and putting his harness on him to take him on a walk! Can’t wait to see him later! I FaceTimed my boyfriend yesterday and he put the iPad on the ground right near him but propped up.. I called Teddy and he looked at the screen all confused with his head cocked to one side and then came running to the screen and licked it! Last time I came out of hospital he was so excited and sat on my lap licking my face for half an hour! I can’t wait to see my boyfriend either.

 

I am petrified for tomorrow. I am sorry it’s not that informative right now.. I will be as detailed as possible after my surgery 🙂

One day to go…

Bleeding Hell and a Pre-Op

17 Jun

Firstly, I want to apologise again for not updating sooner. Truth be told this is the first time I’ve actually been able to sit downstairs on the sofa.. I’ve been so tired all I wanted to do was lie down in bed and do nothing. I have all these things I need to get done and I just haven’t had the energy. Anyway.. enough of that.. I have some great news!

So if you remember from one of my previous posts.. I was stressing about the fact that I haven’t had a period since stopping the dreaded Prostap injections (otherwise known as a GNrH Analog injection)! Well… IT HAPPENED! Yes.. I woke up on the 6th June with even more excruciating pain than usual.. got up, went to the toilet and BOOM! It was pretty disgusting.. Wasn’t a normal period.. All brown and black. At first I was so incredibly happy that it had happened.. as it means things are working for me. As the days went on.. I just wanted it gone! I’m sure the ones that have been through the chemically induced menopause understand that feeling!

For the couple of weeks leading up to that day, I kept saying to my boyfriend that I felt like I was coming on a period and everytime I went to the toilet and there was nothing there, I was getting more and more frustrated; Until I just put my extra pain down to Endo and not period cramping.

I should have known.. I was kicking off about the fact there was no chocolate in the house! Everyday I would ask my boyfriend to get me a bar of chocolate.. and NOTHING! Like we had biscuits.. NO. I needed BARS of the good stuff. When I crave chocolate, I’m seriously like a heroin addict needing their next fix. I’m majorly cranky, snappy and can only fixate on getting my chocolate hit! The day I told my boyfriend that I started my period and I was crying and just generally being me on a period – overly emotional etc. He came home with 8 bars of chocolate, a bag of chocolate chip cookies (the big chewy ones, mmm!) and also brought home some chicken wings for me to eat there and then as he knows I crave those too! To top it off, he brought home a magazine for me to read aswell!

When he walked in with all those, I just burst into tears and couldn’t stop crying. I think I freaked him out, but I couldn’t help it. All week I’d been going absolutely MENTAL! Just going on about needing chocolate and screaming in pain, not being able to move, couldn’t even do the washing up. Oh, I was a nightmare. And that just made me cry! I love him so much, he’s absolutely incredible. I mean EIGHT BARS OF CHOCOLATE – my favourites too! Milka Happy Cow and Cadbury’s Dairy Oreo! Oh my life. Incredible.

Oh wowwww!

Oh wowwww!

My period lasted for 7 days and I ran out of chocolate on the 4th day. Not bad going!

So that happened!

 

Last Friday (14th June) I had to be at the hospital for my pre-op at 11.30am. For those that have never had a pre-op.. it’s basically an assessment of your general health and writing up what medication you’re on, that kind of thing. So I was asked a heap of questions about my health – have I been ill lately aside from my condition etc. Then I had my lungs tested, my heart checked, pulse taken. Then I had my bloods taken. It’s a very quick process.. that they DRAG OUT. I left at 1… RIDICULOUS. Seriously.. I don’t actually understand why one person can’t do everything.. I was seen by THREE different types of people.. One to take my blood, another to take my pulse and have a look in my mouth and listen to my breathing and another to ask me a load of questions. My Mum couldn’t help but comment on the way out about waste of money and resources.. she couldn’t understand why they’re not trained to do everything. She is trained to do everything! She found it funny. Anyway that’s besides the point.. the main thing that happened was I was finally handed my letter for my surgery (SHOULD HAVE BEEN IN THE POST AGES AGO) and a prescription for Fleet (To this day I still can’t believe I have to pay for pre-meds, stupid thing) and on the prescription it also said..

LOW RESIDUE DIET TO BE FOLLOWED FOR 5 DAYS

 

My first question to the woman who was asking me every question under the sun, who by the way looked at me like I was crazy when I said I didn’t drink alcohol – Did she actually think I sat there every night off my tits on morphine and vodka? Hilarious. Anyway, my first question was – What is a Low Residue Diet.

She said it would be written on my prescription sheet. She didn’t know. She didn’t say she didn’t know but she was so brief and blase about it. I kept asking. I then asked the lady who was checking my chest and things – she didn’t know either. Both of their responses were, it will be on the sheet they give you in pharmacy.

Surely, a pre-op team would know the answer to this question? RIDICULOUS.

I then google.. I clearly read a wrong website as it said it’s a diet of white bread and milk. I can’t eat either of those things. Cue me stressing and having a rant as we walked down the corridor towards the pharmacy to get my prescription.

I ask the pharmacist – THEY didn’t know. They try printing me a sheet off the system with a diet plan on it. It wouldn’t work. Surprise. Their response was to get in touch with my Surgeon’s secretary. I just thought I’ll figure it out myself.

And thank you so so so so much to all my EndoDolls on Twitter. You are all so incredibly helpful. To all the beautiful women who sent me photos of their information sheets for the diet, I thank you! Different diet plans that hospital’s provide is something I will try and make available on the EndoDolls forum when we launch.. Or at least a general idea of diets as there was so much info online that wasn’t right, or wasn’t relevant!

It is now Monday and my surgery is on Thursday, so I don’t have to be on this diet for that much longer. It’s so hard, I love eating and the fact I’m having to have food restricted well it makes me cranky!

Ohhh, I feel so much better since I’ve updated my blog. Thank you for reading!

Let the countdown continue…