As we know, for 2020 I’d agreed to have a surgery free year … unless surgery was essential.
At the start of 2020, that was my vision – to have time away from surgery and start to build my body and strength back up. As we know, life has a funny way of not going to plan and so the more we got into 2020, the more my health deteriorated and I was pretty much house bound 99% of the time. I’d adjusted to welcoming a wheelchair into my home and life because walking was already so painful and exhausting. I had a list of symptoms as long as both arms open wide, I was told that some of the symptoms despite not being obvious where likely to be the results of wide spread endometriosis and the impact was being felt across my full body. Also it sounded like I had leaky gut because food quite literally passes through me.
There were two undeniable areas of pain that simply put, became too much to contend with every second of everyday; and so when life threw me the ultimate curve ball and coincidently opened up a huge space in my existence- I decided to use the time wisely. To fill the newly presented gap in my life with answers and opportunities that might just allow me to finally and fully heal.
The opportunity that presented itself was Laparoscopy number four for Endometriosis. After a call with my Specialist he felt sufficient time had passed since my last operation and agreed that given my pain and symptoms the only way to truly see what I was experiencing was to again put me under the knife to see “what lies beneath”.
After the call that confirmed surgery, I used all my spoons that day to do a little celebration – not because I was having surgery, but because I’d been listened to and someone was willing to try and help me. I told the specialist that I was at the point that if I had to loose my left ovary, I was more than willing to consent to it – if that would allow me to live pain free and have a better quality of life. To put that into perspective, the thing I most want in this world is Children to the point I regularly cry my heart out that I don’t have them and can’t seem to produce them. I was still willing to reduce my natural chances of pregnancy, by saying goodbye to one of the main organs required…because that would stop the never ending pain coming from that area of my body. My surgeon repeatedly told me, he did not want to do that – but if things were that bad, he’d have no choice anyway.
Surgery came at a cost, after waiting 17 months on a waiting list with no answers, did I really want my health to continue derailing at the hands or the powers that be… Or did I want to take some control back and press resume on my life again.
My life has been on hold in so many ways for so long, I push back on what I want to do and make the most of what I can do. So if it was safe for me to have surgery, I was pushing ahead with it!
Two weeks shielding was nothing new for a house bound gal like myself, but it was interesting to introduce my husband temporarily to my new full time life. It was weird having someone share my space and see my struggles as they occur daily. It was great to have so much time together and rest before the operation.
If you’ve been following my journey you know I was asking around Bowel prep from the offset of my surgery date being confirmed, and no answer ever came easy. Your girl never wants to do Bowel prep unnecessarily, although it probably came across I was super keen, I just know in the past I’ve not had it annd then my bowels been operated on, so I’d always rather be safe than sorry. Less than a week before the operation I was allowed an emergency trip to collect the confirmed Bowel prep, despite on surgery day no one having any note of it.
The one other time we were allowed to leave the house was for my Covid and blood tests. I’ll be honest, if I experience anything I have not before – the entire build up to it will be one filled with anxiety and every possible thought running through my head, and the Covid test teamed with some of the crazy things on social media had me most concerned. When in reality it was a super quick and easy process, that personally caused zero pain… but then again I used to have cameras up my nose and have had two throat and nose surgeries so maybe if you’re not used to anything like that it could be more daunting. My blood tests on the other hand, were a whole different kettle of fish.
I used to have a tendency of fainting when I had bloods took, so knowing I have to have them done regularly I’ve worked hard to over come my fear and to find ways to not pass out. The first is to ensure I’ve eaten, simple rule, the second is to make sure I have some sugar on the journey, and the third is breath work. Over the last couple of months I’ve had four bloods taken, with no problems but not this time …Let’s just say I had my work cut out for me.
I hobbled out of hubby’s car and the covid nurses seem my crutch “aww what have you been doing to yourself love “…
As the relief of the Covid test being done started to set in, I instantly then put my guard up because it’s a classic example of “you don’t look sick” … at a hospital, by nurses and I’ll be honest as I’m walking through an empty hospital I really can’t be bothered explaining. I just want to get in, out, sanitised and home. So I try to keep it short and sweet “oh I’ve got multiple chronic illnesses and just need a bit of support” I reply with a smile on my face (hidden behind my mask) trying to keep up with her walking. I’m taken into a room and introduced to the chap who’ll be doing my bloods and the nurse leaves.
Have you ever walk into a room and felt your soul get sucked out of you? This was my experience. My crutch and I were asked to purch on the end of a bed, keep upright and let the chap search for veins. As I struggled to perch on the end of the bed I could see the chap struggling and then straight away he selected the back of my right wrist would be the best place to take bloods, he then kicked my crutcher on the floor, lost his medical tape, tripped up over my crutcher and then jabbed a cannula into my writs. Here came the breath work.
In the moment, I’m breathing through the pain but it’s not lessening, the chap keep saying it’s not working and wiggling the cannula around inside my wrist, I look down I’ve no idea what is being done though. Then I’m told my veins aren’t good, we’ll try the left hand. Eyes closed, breath work starts again, I’ve counted two minutes slowly and I can still feel something being wiggled, again I open my eyes and another cannula is being connected to take the bloods, the tubes are being bent in every direction and despite the pain, slowly tiny droplets of blood are going into the tube. I made a few noises behind my mask and he said can you not breathe, when all I was doing was trying to breathe. He took a small amount of blood, apologised galore and I bounced off the side of the building all the way back to the car. Struggling to use my crutcher because both arms had been butchered.
I make it back to hubby’s car and he gives me a reassuring smile, I shut the door, he drives off and then I start crying and the trauma of trying to get bloods and the anxiety of being on my own – just breathing through the errors. An instant relief from the build up of the tests exploded out of me, I was fine – it just brought back some horrific memories from a previous surgery (medical trauma is real)! So we drove back home to our safe place and the shielding recommenced.
Bowel prep day arrived and I got up early to make sure I could have a light breakfast ahead of what would be the 29 hour fast ahead of me. I was given my old friend Picolax to take, two satches, both mixed with a water and to be drank in full at specific times. The smell and taste of the drink is enough to make anyone gag and I’ll be honest it’s not one of the easiest things to keep down. So that’s the first huge challenge, and this time round I seemed to be dancing around a warm glass mentally prepping myself before downing the substance in the glass (and I don’t advise that neither).
Bowel prep kicks in whenever it wants to and once the games began, there’s no way of quitting until it’s finished… and you may think it’s finished… but satchet number two will gladly prove you wrong. So the day before surgery was mainly spent in the bathroom, and drinking as much water as possible to prevent dehydration. It was long, unpleasant and not something I want to repeat any time soon. Oh, and the hunger is real – as everything gets removed from your body.
Fast forward to surgery day, and weirdly enough surgery isn’t something I fear – but going in for surgery during Covid times, was not like anything I’ve experienced before. Firstly I had to do it alone, that meant kissing hubby goodbye in a car park and letting go of all of my normal routines. I try to understand my anxieties and rationalise them as much as I can, and in my head surgery was going to provide me with a better quality of life and answers so that was not something to fear … and that is why I was there.
An empty hospital waiting room with a two way walk system, hand sanitiser stations dotted around, temperature checks before entering the building and fresh face masks provided it was a totally different experience. My room was on an empty quiet coridoor and each time a nurse entered my room she would apply fresh PPE. Surgery started late, and before taking me down the nurses questioned why I had not eaten in so long … my surgery paper work didn’t reflect bowel prep.
I walked down to the theatre room and met some friendly faces behind the ultimate PPE, they put my mind to rest got me on the bed and the last thing I remember is talking about Jamaica. The next thing I know I can open my eyes, there’s a beep, beep, beep, beep, my heads heavy – normally at this point after surgery I instant come to life and become aware of everything … because I’m so desperately looking for answers but this time I couldn’t I was so exhausted.
My surgeon came into the recovery room, he explained what had happened and I can merely tell you fragments of that and advised me he’d come and see me when I was awake. Great I thought, lets rest up. Back to my empty room I went and the nurse passed me my phone and I can’t remember letting my nearest and dearest know I was out of surgery but the voice notes on my phone act as a reminder “I’m alive … I’m in pain, but I’m alive”.
My biggest fear about surgery without visitors was what the heck you do afterwards, like toilet trips, getting dressed out of your backless gown etc. Normally even with hubby on hand I’m told not to use the toilet and use a bed pan, which simply put ain’t ever going to happen so normally hubby helps me to and from the bathroom. I thought sodd it, after four surgeries enough people have seen my entire body – the nurses can help. Except this time, no one warned me not to use the bathroom, and no one offered any form of help. It was me and IV’s making trips to the bathroom alone, and one trip led to six, the sensation to wee was immense but it was like a water infection little to nothing would come out. 2.5 hours after surgery, I was told I could go home and so I sat bent over packing my suitcase bending down for my crutch and had to walk out of the hospital. No one came back to see me, no one advised me what had happened in the operation, all of my questions went unanswered and I came home with an empty note pad. My priority was pain, I’d had to fight to get morphine to take home, I was in the most pain from surgery I’d ever experienced, I was alone and no one seemed to want to help little disabled me… so the best place to be, was home.
I don’t think I even realised that I’d been discharged with two medical lines written on a piece of paper that were the only indication of what had been done… not in any detail. So as of now, I know my bowels had for the been impacted, that my left ovary was causing so much pain because it was glued down.
Fast forward to my post op appointment.
I spent the morning of my appointment riddled with anxiety, I’d hardly slept the night before and fertility was one of my main concerns … the second was that I’d likely be given any news on my own.
I had to leave hubby in the car park as I went in for my appointment, and due to not having a Covid screening call the day before, I was left sat outside in a tent until someone was free to do one. Following that I was sent to the wrong waiting room for twenty minutes – to then be sent back to the main reception area I had originally been in. I thought all the mix ups was a bad omen; but thankfully I was wrong.
As an anxious person, I tend to worry about everything – its me trying to gain control over things, if I can plan for the bad … anything better is a plus.
In short I did have Endo dotted about internally, especially around my bowels which has not been successfully excised and tested (confirmed endo), my left ovary was glued down due to scar tissue and now released, dye was put through my tubes and ran through as intended, my ovaries were not in perfect condition, but good condition (I’ll take that!) and my specialist said words that literally made me want to hug him. Natural fertility was back on the cards.
My mind was already blown at this point, as I looked at the internal photographs. Then we moved onto the diaphragm and I was asked a weird question “had I been diagnosed with diaphragmatic endo previously or were we looking for it” I quickly replied that he had diagnosed me in Feb 19 and as he flicked back through my notes … there it was.
The next part of the appointment I still haven’t fully digested. My diaphragm was explored in full, both right and left side, there was no presence of endometriosis found anywhere on my diaphragm … and I gazed at the photo as the specialist said “look its abosultely pristine”.
How? How could that be, he’d literally just shown me the endo found last year on my diaphragm but now, now there was no trace it had ever even been there. Yes, I need to research the heck out of this, but apparently this could be linked entirely to lifestyle choices. My specialist believes that there is a link to the auto immune system, so if that was weakened due to illness or trauma or high stress the bodies immune system is weakened. If them factors are removed, and the environment is right (diet, nutrition) can result in reduction of tissue growth. If I hadn’t have had the images in front of me, I’d have never, ever believed him … because I still have diaphragm pain.
Nerve pain / damage is one explanation … having multiple chronic illnesses is another.
I cried happy tears on the way home. Three years ago I’d gone vegan, due to the realised impact that food was having on my hormones and illness … three years on and a very recent move away from a high stress filled life – and maybe, just maybe, these things were having a positive impact on my health … body and illness.
Weeks on, I still haven’t fully process the news. I’m still trying to find my feet with chronic illness and daily chronic pain caused by Endometriosis, Fibromyalgia and Hypermobility (amongst other things).
For now though, hubby and I have everything crossed for our miracle baby. I hope you support us on that emotional rollercoaster!
You can see my journey pre and post surgery four over on my YouTube page. Please make sure you like and subscribe!
Thanks for reading,
Scouse Spoonie, Nat xox